Steve Rider's Web

Tributes to Steve

2009-06-09T07:30:00.000-07:00

Many people have expressed an interest in making a contribution on behalf of Steve. We have added a few links on the right side of his blog to support the organizations that supported us.

Steve's stem cell transplant (his chance of a cure) was possible through the 9/10 match he found on the Bone Marrow registry. Many people still don't find a match, so it is critical that people of ages 18-60 become registered.

The Leukemia and Lymphoma Society is committed to fighting blood cancers. Through the LLS website we found information about MDS and AML when Steve was first diagnosed. They also provided us financial assistance with medication costs and parking fees. I spent hours reading the discussion boards where other patients and caregivers talked about treatments and shared their questions.

Steve's friend Brian Gist is participating in the LLS Team in Training program. Sponsoring his fundraising is another way you can donate to the Leukemia and Lymphoma Society.

A Celebration of Steve's Life

2009-06-06T17:15:00.000-07:00

We really appreciate all of the warmth and love that all of you have shown. Thank you so much. It is clear that Steve was well-loved by so many people.

Steve's Celebration of Life will be held on Saturday, June 13 from 3:00-7:00 pm at the Center for Urban Horticulture (NHS Hall). The address is 3501 NE 41st Street, Seattle, WA 98105. Directions can be found here and a map of the facilities is here.

A short service will begin at about 3:00, followed by a reception. Food and refreshments will be provided. All those who knew or have been touched by Steve are welcome to come and celebrate his life.

**Please note that the University of Washington will be holding its graduation ceremony on the same day and we expect that traffic in the area will be pretty congested. So you may want to plan accordingly and leave a bit early.

As you all know, Steve was a happy, upbeat guy who saw the positive side of everything. In keeping with Steve's wishes, we would like this service to be a positive reflection on Steve's life and a festive event. Please dress accordingly (i.e., no need to wear black mourning clothes).

There will be a memory book where you can share your memories of Steve and any other pictures or mementos.

We look forward to seeing you there.

Steve Rider: March 6, 1974 - June 5, 2009

2009-06-05T12:45:00.000-07:00

Dear friends and family,

This is Steve's sister. We're so sad to share with you all that Steve passed away early this morning at about 2:30 am. As you know, he developed a high fever yesterday afternoon and was admitted to the hospital at 7pm. His heart rate was very high and his oxygen levels were low. He was moved to the intensive care unit where he was sedated and intubated. His fever stayed high and they continued to monitor him. The doctors confirmed that he had pneumonia. Regardless of everything the doctors tried to do, he was unable to fight the infection and his body quickly began to fail. We believe he died painlessly. As you can imagine, we are completely devastated. We had no time to prepare or even to say goodbye. Steve was also not prepared. Although Steve had been battling leukemia for the past year, he seemed to be improving until about a week ago. This recent downturn in his health and the sudden onset of infection last night were such a shock. We miss him so much already. Johanna is surrounded today by lots of love from family and friends.

He was diagnosed one year ago today.

We are planning a Life Celebration ceremony and will share the details with everyone as soon as we know.

Thank you for all of your love and support.

double cross your fingers for steve

2009-06-04T23:34:00.000-07:00

This is johanna. Steve is in the ICU at swedish with a possible pneumonia. He wasn't feeling well this afternoon but didn't get a fever until after 5. His doctor admitted him and now he is intubated so they can keep his oxygen up.
They expect him to be sedated for a few days.
This is certainly what we hoped to avoid. Please keep Steve in your thoughts with positive energy. He knows he needs to fight this. We'll update when we know more.

Day +127 - We have a plan: re-transplant

2009-06-03T15:58:00.000-07:00

Short update: the conference reviewed my case today and recommended a re-transplant using the same donor. This would happen ASAP, assuming the donor is still willing. The conditioning regimen would include chemotherapy and radiation this time, not just chemotherapy, so that's a little scary since radiation is pretty tough stuff. They called to see if we wanted to proceed, and I gave the OK. They're in the process of contacting the donor now.

If the counts recover by themselves before the transplant, we'll cancel it. But it seems less and less likely. So the next step is that I expect to be re-admitted back into the SCCA program and we'll start with a consultation to go over the plan and to give us a chance to ask questions, get all the details, and understand how they came to their consensus. In the meantime, I'll be on daily blood draws and transfusions as needed to keep me going until the transplant, unless the counts recover by themselves. But Johanna and I are happy that there is a solid plan that the professionals are all on board with. Even my local oncologist, who worries incessantly about me, agrees that it's a good plan.

I'm sitting in the infusion room with Johanna and my mom getting platelets right now, and am amped up on a double tall iced mocha with whip cream, so I'm feeling pretty good. After this we may head over to West Seattle for crinkle cookies at Alki Bakery.

Day +127 - No news yet, some graphs

2009-06-03T12:46:00.001-07:00

On the left is my new PICC line, now in 2 flavors! If you remember, the last PICC catheter I had back in November only had one lumen (catheter) and the nurses would get so annoyed using it since they would have to switch back and forth between drawing blood and infusing medications. With a dual-lumen PICC, they can use both lines simultaneously, in either direction.

Today is the day where my case will be presented in front of the transplant teams at the Hutch. Hopefully they'll come to a solid consensus as to the plan of action. Luckily there are some seriously smart folks on the team, some of the same doctors that oversaw the very first transplant at the Hutch in the 70s. And the woman presenting my case is someone who cares a lot for me and who was my discharge doctor. She's an old hat too, and during one clinic visit we geeked out about MacBooks, old computers and punch cards, and the latest technology trends. So hopefully the right people are looking out for me.

Right now my counts are dropping quickly each day, even more so than last year when this all started. My platelets are already down to 15 even though I had a platelet transfusion last Friday, so I'm scheduled for another one today. I'm good at practicing patience, and am still holding out that this is just a temporary glitch and that it resolves itself. If the doctors agree that that's a likely scenario and recommend it, I'm more than happy to just be careful and wait it out. But it could be an entirely new form of disease such as aplastic anemia caused by the chemotherapy used to get me where I am today. The unknowns at this point are the most frustrating, since it's hard to plan or think about things a week or two ahead. But either way, I'm doing a pretty good job keeping my spirits up since for the most part I feel fine and can function normally, albeit very carefully without my immune system. It's like I'm a shiny new car with a rebuilt engine, but driving around with busted air bags and a leaky oil line. UPDATE: Johanna read this and thinks that I'm like a shiny new car with a rebuilt engine that just blew a head gasket.

Yesterday I went in for my daily Neupogen shot, so now I have several bruises from the shots all over my upper arms. Today I'll go in for another one. These will go on indefinitely until we figure out a plan. But Johanna has been able to take time off work so we've been enjoying the nice weather and doing fun stuff around town, more than we normally would, like browse around REI for summer clothes, get coffee, meet for lunch together, drive around the city, etc. It doesn't take much to entertain me so I haven't been *totally* in the doldrums.

My friends say that my new girl blood in me is just acting moody. Ha! Maybe it's time to buy some fancier soap and start wearing cologne :)

For those of you that want to see what's been keeping me up at night, when I have a harder time getting my spirits back up, here are the latest charts of my blood counts. The purple bar is when I had conditioning chemotherapy for the transplant, way back in January.

Day +125 - PICC line, chimerism results, counts still low

2009-06-01T14:26:00.000-07:00

Today I had another PICC line central catheter put in to handle the onslaught of daily blood draws and possible transfusions over the next several weeks. I don't regret pulling the Hickman line a few weeks ago, since a few weeks ago everything was going great and there wasn't any reason to keep it.

Today's blood draw are showing that the counts continued to drop over the weekend, even with the Neupogen shots I'm getting. They say it could take a week to see any response to the shots, but the docs are skeptical and give it a 10% chance. My bets were on the steroids, and I'm frustrated that they didn't have any affect since that seems to have been the only variable that really changed between when things were fine and now. The good news is that the steroids have completely wiped out my skin GVHD. They have also given me a ton of energy and are probably responsible for me being in as good of a mood that I'm in, given all this. I actually enjoyed myself this weekend! Oh, and my chimerism results from Friday show that 100% of my granulocytes (bacteria-fighting cells) are still donor cells and 51% of my lymphocytes are still donor cells. This is good, since it means my donor stem cells are still camped out in there and that they weren't wiped out by my old immune system. That would have been a graft failure. Right now they're calling my condition a graft dysfunction. This is sort of good news, since it means there could be an alternative to curing the problem that doesn't involve wiping it all out again with another transplant and starting over.

My oncologist consulted with the transplant team at the Hutch today, who will be presenting my case at their weekly conference to figure out how to proceed from here. In addition to options such as hoping the cells wil recover on their own, there has been talk of doing another transplant with cord blood, re-transplanting with the same donor, or treating this as an entirely new disease like Aplastic Anemia. So after Wednesday we should have a better idea of a plan going forward, unless the counts start suddenly going up by themselves in the next few days. Luckily I feel fine physically and Johanna and I did a bunch of fun stuff this weekend, though our spirits are down a bit especially each time after leaving the doctor's office. I don't think we're overly *worried* about the future, since the doctors are smart and we've gone through tough stuff before. It's just dealing with the drama and the realization that it looks like we're up for another tough fight and all the gearing up required to go through with it. But you gotta just take things one day at a time. I'm not in the hospital or anything and can still function like a normal person day to day, so I can't ask for too much more than that at this point.

Day +122 - Outlook not so good

2009-05-29T08:28:00.000-07:00

So here's the deal. The docs think my graft may be failing. It supposedly occurs in only 5% of transplant recipicients, and they don't know why it's happening in my case. It's similar to a condition called aplastic anemia, in which the stem cells produce normal, healthy blood, but just not enough of it. This is unlike my previous condition where my stem cells were producing a slew of malfunctioning cancerous cells, which was crowding out the healthy cells and causing their counts to be low. But this aplastic anemia condition is just as bad as MDS, if not worse, since the stem cells are on the verge of essentially shutting down, meaning no new blood is being produced at all. At least before I was sort of just hovering at low counts. Right now my white blood cell count is at 0.0, my platelets are at 21 and dropping, and my red blood is trending down as well. SO, there are three options right now:

1) the new stem cells magically rebound and start producing blood on their own
2) growth hormones and steroids are used to help jump-start the stem cells to get them going again
3) re-transplant

Option 1 is the best-case scenario, since things would just return to normal with no intervention. Option 2 is a good-case scenario, but the risk is that it's possible the growth hormones might actually reactivate my old immune system. Even though my old immune system is insignificant and essentially killed off, there is a slight chance it could be enough to cause the old immune system to kill off the new cells and take over again. This would put me back at square 1, but still better than being stuck in my current state of limbo.

Option 3 is the last-ditch scenario, since I didn't have a lot of donors to start with and they prefer not to use the same donor in this case. It also means juggling around insurance companies since most insurance providers have a lifetime maximum for transplants and I've already exceeded mine. Plus it's a dangerous procedure and just a sucky experience all around since it means a month in the hospital and another 4 months of recovery and worry the whole time.

The docs aren't comfortable just waiting around for option 1 so the Hutch has already started looking for a new donor. They think the graft will fail and that a transplant is immiment. We've started with the growth hormones and steroids in option 2 to keep me going until the day of transplant. If things start recovering because of option 2, we would consider canceling the transplant. But they want to start down that road just in case. The growth hormones consist of a daily sub-cutaneous shot in the arm, and I'm back to 100mg of steroids a day which has actually reduced my recent flare-up of skin GVHD quite a bit. We've been reading that a flare-up of GVHD can be a cause for graft failure, so we're hoping the steroids might resolve both problems. Of course it's not a permanent solution, but at least the steroids give me a huge boost in energy, which has sort of helped me deal with all this stuff. :)

So the last couple of days have been pretty discouraging for us. Things went from super well to super dire in just a matter of days. Even the doctors at the Hutch were surprised. Luckily all the right people are involved and a lot of thought is going into these decisions, so I'm in the best hands I can be. Next Monday I'll have another PICC catheter put in my arm for my now-daily blood draws and we're just taking things day by day.

Keep your fingers crossed a lot.

Here are a couple of recent pictures from Mother's day, when we had a nice day of going to the Volunteer Park Cafe and then the Kubota Gardens in South Seattle. This is a nice, big sort of meandering garden that isn't as small and formal as some of the other japanese gardens.

guest post: growth factors

2009-05-28T23:14:00.001-07:00

hey. it's johanna here. I'm just fillin in for steve so he can have a break.
we had a pretty dismal day, most of it spent waiting at the doctors office for a plan of care.
the plan is, growth factor every day to stimulate his body to make cells. I don't know a lot about it yet, but we know there is some risk that his "host" system will come back with the leukemia too. There was also talk of another transplant and finding a new donor.
After that, we took a walk around pinehurst and there was lots of cool plantings in these "swales" the city put in. Steve was feeling this weird nerve-pain feeling and so when we got back to the pharmacy we asked for the drug information and there are a lot of unpleasant side affects to the growth factors he will be getting. I'm hoping they work. The other hope is this is just a strange marrow-hiccup and his body starts working (no explanation is fine with me).
We're not feeling that great coming on the year aniversary of his diagnosis. But I have to remember and remind steve that we will just do our best to cope and deal with the day to day.
On the up side, they also put him back on his steroids, and he was feeling pretty energetic this morning. Having energy is a good to help us fight this situation.
I really need to read up on graft failure and maybe gvhd. Sometimes information isn't so nice to have though.

Day +120 - Unexpected drop in blood counts

2009-05-27T22:20:00.000-07:00

Apologies for not posting for such a long time. Everything has been going great (until today) and I've just been working on the condo and generally keeping busy. The reason I haven't posted is not because things have been sucky, the main reason is that there hasn't really been much to report.

Until today, when we got some surprising news. We went in for a routine clinic appointment with Dr. Goldberg, my primary oncologist, and he became pretty worried after seeing my latest blood counts. All my counts seem to have tanked in the last week. My white blood cell count is down to 0.096, which is almost non-existent, and my platelets are at 38. It's like deja vu from last year. It was 4:30, so he called some of the docs on the SCCA transplant team, then did a bone marrow biopsy on me a few minutes later. He gets pretty worked up over these things, so naturally, we get pretty worked up too. The docs at the SCCA have always said to expect the blood counts to yo-yo, and so far they've stayed pretty stable, so although we haven't seen this before, it might not be totally unexpected. I'm optimistic that the graft is still going well since we did get very positive results on everything just a few short weeks ago. I finished the steroid taper last week, so we're wondering if the lack of steroids is somehow causing the problem. The bone marrow biopsy will give us a definitive result since it will tell us whether the cancer cells have returned or not.

My skin GVHD has also returned in the last few days since I'm no longer on the steroids, so now I've got a pretty nasty rash on my arms and legs. To be on the safe side we started me up on a pretty high dose of steroids tonight to see if we can get it back under control. Phooey on today. Cross your fingers that this is just a speed bump and not something bigger :(.

Day +102 - New blood type!

2009-05-09T23:57:00.000-07:00

I didn't realize it had been almost 2 weeks since I last posted. Well, the blood bacteria I tested positive for was negative last week, but the clinic still had me start on the Vancomycin antibiotic anyway. They called me the day after my last post, when I thought I would be off the hook and that we would just wait for my next test results. Oh well. So I'm on the "bottle", twice a day. This is the little baby bottle IV infusion kit that doesn't require a pump. I can stick it in my pocket and forget about it. In fact, I've fallen asleep with it a couple of times.

Last Wednesday was my official discharge date from the SCCA. Woohoo! Next Tuesday I have a clinic appointment with Dr. Goldberg, my primary oncologist. Unfortunately, the infectious diseases doctor recommended that I stay on the Vancomycin antibiotic for an additional 3 more days, which means that I didn't get my Hickman taken out last Wednesday when I thought I would have. Oh well. So I'm doing the IV infusion twice a day and it will finish up on Monday. Then Tuesday I should have my last blood draw through the Hickman, and then *cross fingers* Dr. Goldberg will take it out.

During my last SCCA visit, the doctors prepared a summary report and included lab x-rays on CD so that I can hand-carry everything to Goldberg. They also sent duplicates to his office. I love how everything is so organized. I'm happy to be leaving the SCCA but will miss the level of professionalism there. I'm not sure if I got the same level of individual care that I get with Goldberg since the SCCA doctors rotated off the transplant team each month, and so the new doctors had to learn about me all over again, but everyone was competent and professional and always had time to analyze closely what was going on with me at the time. Since everyone working on the transplant team is in such a specialized field and the fact that they do over 400 transplants a year, they've pretty much seen everything, so Johanna and I have been confident in their recommendations since they can back it up with real patient data. I'm fine with being a statistic and getting this treatment or that treatment based on the symptoms when there are thousands of previous cases before me. I had a lot of emotional experiences there and will be reminded each time I see the building from the freeway.

Oh, and during my last clinic visit, a representative from the blood bank came by to say that my blood type had officially switched to A+, the donor's blood type! My old blood type was O+. He said that I was one of the fastest patients to switch blood types, and that most normally don't switch before they leave the SCCA. Cool! That means that the majority of red blood cells now running through my veins were grown from the donor stem cells. Red blood cells normally live for about 6 months, so the new cells are doing a good job of quickly replacing the old, buggy cells. Other good news is that I only had to have 2 blood transfusions after the transplant, which is good since it means my risk of iron overload is greatly reduced. Too much iron in the body can be a serious problem which can occur when patients require a lot of red blood transfusions. My donor must be one tough woman to have such hearty stem cells. Way to go stem cells!

By the way, I get claims notices from my insurance company every few days detailing all the payments they are making on my behalf. I don't usually like to talk about money on the blog, but one of the claims in this last set caught my eye. Buried among the dozens of sheets of paper was a single line item for "Hospital room and board: 1/27/09 - 2/15/09". This single line item was for the 22 days when I was in the hospital for my transplant. The amount next to it: $96,000. Can you believe that?? $4300 a night sure is one fancy hotel room. The total amount for those 22 days was $152,000 which includes all the labs, x-rays, tests, etc. Thank god for good health insurance. Though I've already maxed out the $250,000 lifetime transplant limit under my insurance, the standard amount, which is why we made sure to get secondary coverage since the SCCA told us up front that we would go over the limit. Since I'm uninsurable now, I got secondary coverage through WSHIP, the WA State health insurance pool, which guarantees coverage to people who are denied elsewhere. Yes, I actually had to apply to a random insurance company for the sole purpose of getting denied, so that I could use the denial letter in my application to WSHIP. Insurance companies seem to use a standard form to determine your health and eligibility. What's funny (sort of) is that the first page lists a bunch of diseases, and if you answer "yes" to any of them, the directions say to just go ahead and skip filling out the other 12 pages of forms, since that "yes" answer makes you uninsurable right off the bat. It's scary. Anyway, WSHIP is expensive and a pain in the ass to work with, but I'm happy to have them. I try not to think too much about the money involved since it can be pretty overwhelming. It's unbelievable how much health care costs these days.

That's it for now. I've been feeling pretty good lately. The only things that make me feel bad lately are the medications. I've recognized that I'm pretty much useless between the hours of 10am and 2pm. I have barely any energy, even with coffee, and it takes a huge amount of effort to get motivated to do anything. This is mainly because my daily steroid dose is almost down to 0 (hooray!), but my adrenal glands are "probably all shriveled up" according to my doctor, which means my own body isn't producing enough to keep me going. I'm also very sensitive to light because of the Voriconozole, so everything ends up seeming really bright and I find myself squinting all morning. After 2pm, I get my energy back and then I feel totally normal for the rest of the day. In fact, these last few weeks Johanna and I, along with my parents and our friends, have been painting and fixing up my condo downtown since my last tenants just moved out. It's a herculean task, since 2 of the rooms had wallpaper which my parents laboriously pulled down, and we've been at the condo painting walls, ceilings, doors, trim, closets, you name it, pretty much every day for the last 2 weeks. It's nice to be at the condo again and it's been a nice distraction and has helped give me back some energy for a change.

Day +91 - I'm a girl!

2009-04-28T23:57:00.000-07:00

Well, I'm a girl as far as my blood goes, which is good news! It means that I can now spill blood at a crime scene and get away with it. Just kidding. What it really means is that the graft was successful! We've assumed things were going well based on my increasing blood counts, but this is the first official result that shows the actual percentage of donor cells versus my own cells in the blood. It's called a chimerism test, and for the 3 blood components that are measured, two are 100% donor and the third is 76% donor (26% Steve). The last amount isn't 100%, but the doctors said this is fine. This last amount is for my lymphocytes, better known as the "natural killer" T and B cells, which are one of the types of white blood cells that protect you from viral infections. Wikipedia says that their lifetime is a few weeks to several years, so I guess it makes sense that I could still have some of my own around. Most of the other white blood cells live for just a few hours. Also, the whole point of the immunosuppressants that I've been on (and still am on) is to slow down the new immune system to prevent it from going on a rampage, so it seems like they're doing their job. Though the new immune system did a good job of wiping out all my other blood components, hence the 100% donor cells everywhere else :) One of the types that is 100% donor is my "whole marrow", the blood factories inside my bones, which means that all the stem cells in my marrow are donor stem cells. Super cool!

I also have an official discharge date, which is next Wednesday. That means I have just a few more days of appointments at the SCCA. After that I'm discharged back to my regular oncologist. I'll also have my Hickman line taken out next Wednesday. I've had it installed in my chest for over 3 months now, and while I appreciate having it for some of those monster blood draws and IV infusions, it will be nice to have it out and feel more like a normal person again. The Hickman has also been causing some problems lately. Sometimes, at a blood draw, the end of the line near my heart gets clotted or gets stuck near a valve and the nurses can't draw blood from it. So we try all kinds of things like raising my arms, flushing it multiple times, having me walk around the room, lying flat on my back, etc etc. The nurses can get just as frustrated as me. Last Tuesday it was finicky again and it took about 45 minutes before we finally got it cleared and could draw blood. The solution? A combination of deep coughing and talking. Normally blood draws take just a couple of minutes. And I've had to stop using the tape dressing that covers the point where the catheter goes into my chest since the tape irritates my skin now to the point where if I leave it on for a day, it will peel the skin off and leave a scab. No fun there. So I'm using an alternative gauze dressing that has to be changed every day and before I shower. So as much as I appreciate having the Hickman, I'm ready for this thing to be out.

There was also some minor bad news from this week's clinic visit: I have osteopenia, which is a less severe type of osteoporosis, but it's bone loss nonetheless and I won't get it back. My spine and hip bones showed no loss, but it was in my femur bones that showed the osteopenia. This is one of the side-effects of high-dose steroids and is why I had been instructed to get as much calcium and vitamin D as possible. The nutritionist said that given the super high amount of steroids I received at the beginning and the fact that I've been on them for so long, that I did very well all things considered.

Also in the mildly bad news department, I got a call at 7:30 yesterday evening from a lab tech saying that my Tuesday blood cultures tested positive for "gram-positive rods". Ugh. If you remember, not too long ago I tested positive for gram-positive cocci and had to go on Vancomycin IV antibiotics for 7 days, twice a day. This was the little baby bottle IV infusion kit. I would normally have to go on the same antibiotics for this infection as well, but since I feel fine and don't show any side-effects, we're going to wait and see if the cultures from this morning's blood draw grow anything. If they're negative we'll just assume I got over it, but if it's positive we'll have to do the antibiotics again which might delay the removal of my Hickman a week.

That's it for now. Here's a cool snippet from the final analysis on my cytogenetic tests that were run on my bone marrow. Cytogenetic tests aren't typically run on patients who don't initially present with any chromosomal abnormalities since the testing is fairly labor intensive, expensive, and requires a couple of weeks to obtain results. But the Hutch likes to run them anyway for all patients, before and after the transplant. In a cytogenetic test, a bunch of cells are prepared and stained and 20 are analyzed by a cytogeneticist under a microscope. There are a bunch of cool graphs and detailed explanations, but the part I got a kick out of was the final analysis:

Normal female karyotype, consistent with cells of donor origin. This analysis revealed a normal female karyotype with no demonstrable clonal abnormalities.

I'm not just normal, I'm a normal female! At least as far as my blood goes. So technically I'm a chimera, pronounced "ky-MEER-uh", meaning I have two genetically distinct cell populations. I thought it was cool that the Chimera with a capital C was a mythical monster with the head of a lion, the body of a goat and the tail of a serpent. But Johanna thinks it's more funny that the word's original Greek origin means "she-goat". Ha ha.

So anyway, I now have the blood of a girl. Let the jokes commence.

Day +84 - Biopsy results are good!

2009-04-21T14:52:00.001-07:00

Just finished meeting with the docs today, and the results of last week's bone marrow biopsy are 100% normal. Whew! From the pathology report:

No abnormal myeloid blast, monocyte or maturing myeloid population identified. No immunophenotypic evidence of a myeloid stem cell disorder is identified.

This is the 2nd time my biopsy results have been short, sweet and AWESOME! The skin biopsy they did at the same time showed low-grade continuing acute GVHD of the skin, but the doctors aren't too worried about that. If I can taper completely off the Prednisone steroid and still only have low-grade GVHD, no further treatment would be needed. It would only be a problem if it flared up again. So far, so good.

After the clinic visit I stopped by for a pulmonary function test, where they lock you in a tiny, sealed room and have you do various breathing exercises. I did one of these just before the transplant, and the good news is that my lung capacity and pulmonary functions are all normal and unchanged from before. In fact, my lunch capacity is 118% of normal!

Other good news: I'll be stopping the Amlodipine and Prilosec medications today, and the Ursodiol medication in a few days. These drugs counteract the effects of the immunosuppressants which I'm slowly tapering down. For example, the Amlodipine is used to treat my artificially high blood pressure and the Prilosec helps with the acid-reflux that can happen due to all the nausea one experiences after a transplant. The Ursodiol has been used to protect my kidneys during all this, since the kidneys have been working overtime to process all the toxins going through my system. Each time I get to drop a medication, I feel like progress is being made, so this is great.

Last week's bone marrow biopsy went fine, though I started off the day with a migraine and little sleep. It didn't help that the blood draw that morning required me to fast, so I couldn't take any migraine medicine or drink coffee that morning. I brought my migraine medicine to the clinic and popped the pills as soon as the blood draw was over. 30 minutes later, the headache was gone, just in time for more suntan treatment, a visit to the snot guy, and then to be sedated for the bone marrow biopsy. The nurses were funny and my mom watched the procedure again. The room fills up pretty quickly with all the different technicans, nurses, and lab people, and you're hooked up to lots of equipment including oxygen in your nose, a blood pressure cuff, EKG monitors on your chest, and the IV lines feeding the sedative and pain killer drugs. So there are a lot of wires to be careful of. It can be a little intimidating at first. This was my 9th bone marrow biopsy, so it's pretty routine now. I remember a little more of the procedure this time since not as much sedative was used, so I remember chatting a little bit, some of the pain and awkwardness of the procedure, and being wheeled into the recovery room. Usually the last thing I remember is saying how well the sedative was making me feel (it really does make you feel good) and then "waking up" in the recovery room. I like that model better :) Though I usually end up bugging Johanna or my mom by asking the same questions over and over until the amnesiac effects of the sedative wear off. They say it's pretty funny to hear me when I'm like that.

This week I have more workup tests so that the doctors can make a recommendation for my long-term care. I should be discharged in the next week or two. Exciting!

Day +78 - Feeling great!

2009-04-15T13:01:00.000-07:00

I feel great today, in fact I've felt great since Monday. I think it helps that I don't have any of those annoying symptoms I've been dealing with for the last month plaguing me at the moment. I feel like a normal person for a change.

Yesterday I had my MUGA and DEXA tests and a clinic visit with my transplant team. I was originally scheduled to have the MUGA test first, which is where radioactive markers are injected into your blood so that they can test how well the chambers in the heart are functioning. But the technician running the DEXA tests said, "Wait a minute, I can't have Steve radioactive for my test!", so we did the DEXA test first. The DEXA test is basically a set of x-rays to measure my bone mineral density. It's done to see how much bone loss I've had since the transplant. I've never had a baseline test, but the technician said they have enough data on what the bone mass should be for a typical patient my age that they don't need baseline tests anymore. After that was done I headed over to the infusion room for my MUGA test. This involves a blood draw, then a half-hour wait while radioactive markers are mixed in with my drawn blood. I went down for some coffee and yogurt while they mixed the blood. After half an hour, they called me back and re-injected the radioactive blood back into me. It was a little surreal, since they use a special lead-lined syringe containing the radioactive blood. It looks like something out of a movie. Thank god for my central catheter, since last time I had a MUGA test it was right after I had a bunch of chemotherapy, and we spent most of the time searching for a vein that wasn't collapsed. It was Christmas eve and I remember it being sort of an awful experience. The Hickman catheter makes all these blood draws and infusions a breeze. Then it was off to a separate room while they ran a special x-ray plate over my chest to measure the blood flow through my heart and arteries. On the monitor I could see real-time images of the blood flow, so that was pretty cool. The recording took about 15 minutes and then it was done. I ended up taking a short nap during the procedure since the pillow and blankets were pretty comfortable.

After that was my weekly clinic visit, for which I got a gold star since there really wasn't anything wrong with me. We talked about my recent visit to the hospital, the skin GVHD which is almost non-existent now, thanks to the PUVA suntan treatments we think, and spent the rest of the time joking around with the doctor and nurses about various things. Each month they rotate the doctor in charge of my transplant team, and this month it's Dr. Doney, a doctor I saw about 4 months ago just before I went in for the transplant. She's very sarcastic and funny, and I can't remember everything we horsed around about, but I left in a good mood. My counts look solid (I've updated the charts in the right-hand column), and we left discussing my transition back to Dr. Goldberg and my long-term care.

Today I'm back at the clinic for an appointment called "Medical Photography", which is where you basically strip down to your boxers and have pictures taken of you for documentation. They took pictures of my hands, legs, feet, chest, head, etc. I thought this was pretty cool, since it gives the clinic a record of my physical condition. A year from now, they'll take another set of pictures for comparison.

Right now I'm in the waiting room on the 6th floor of the SCCA, looking out over Lake Union, waiting to see the clinic dentist to see how well my teeth and gums have fared since the transplant, and then I'm done for the day! The weather is looking great so I might see about taking the scooters out for another spin this afternoon.

Tomorrow I'm free, then I have another bone marrow biopsy on Friday. Each week, one of the vials of blood drawn from me is used to check whether my blood type has changed from O+ to A+, since the donor is A+. As far as I know it hasn't changed yet, since the lifetime of red blood cells is about 6 months which means I still have a bunch of my old red blood cells running around my body. But the samples from the bone marrow biopsy on Friday will be used for a chimerism test, which will give us an accurate measure of exactly what percentage of blood components are host cells versus donor cells. I'm excited and anxious to see what it shows.

Things are looking good! Keep your fingers crossed that the good news continues.

Day +77 - Brief visit to hospital, gut bug gone

2009-04-14T10:40:00.000-07:00

It's day 77, and the stomach cramps and frequent trips to the restroom have finally gone away. Whew. What a relief. We don't know yet whether it was a stomach virus or a brief onset of GVH of the gut, but the cramping and diarrhea stopped Saturday and I'm just happy to be feeling better again. Bring on the coffee and spicy food again!

Then, early Sunday morning brought Johanna and I to the emergency room for a brief visit. It started Saturday afternoon. I developed a bad case of sinus congestion and was blowing my nose almost every five minutes. That night I had a hard time sleeping since I couldn't breathe through my nose and I was feeling sort of sick. It was around 3 am when I started getting the chills, and I said, "Uh oh", and curled up into a ball to get warm. An hour later I was sweating. I knew what this meant. I took my temperature and had a fever of 100.3. Not a high fever, but the first fever I've had since I left the hospital. Any fever means you have some kind of infection. It was high enough to meet the criteria for calling the nurse. Johanna originally thought I had said "one hundred and three" so she was out of bed in 5 seconds. So we called the nurse, the nurse said come on down, and we packed and hopped in the car, since we didn't know whether I'd be returning that night, staying overnight, or staying for several days.

We were told to go to the 8th floor at UWMC, which is the floor right above where I had my transplant, so it brought back memories. The nurse at the front desk was expecting us and showed us to my room, and I had a bunch of blood cultures and labs taken, then was sent down for an x-ray. The on-call doctor checked me out and since my fever had gone down, decided to send us home. All in all it was pretty satisfying to see how fast they reacted and how fast we were in and out of there. We were able to bypass the emergency room without having to check in or wait around, and we were back home by 6 am. Johanna munched on a breakfast burrito I had made the day before when we got home, and we went back to bed feeling a lot better.

That was Sunday morning, and I felt great all day Sunday. In fact I'm feeling great today as well. Almost all my symptoms have finally cleared up, except for a bit of a stuffy nose, which I can deal with. I also got notification from my nurse that my last snot sample with the "snot guy" tested negative for the cold virus I had a few weeks earlier. This means I'm no longer in respiratory isolation and can finally enter the SCCA clinic without a mask! Woohoo! I can feel like a *normal* patient again! It's also nice since now the nurses don't have to gown up with gloves and masks either. Good all around.

It's Tuesday now, and since we're nearing my discharge date, I've got a few tests lined up today starting at noon, including a MUGA test and a bone density test to see how much bone mass I've lost since the transplant. The MUGA test involves an injection of "tagging agents", radioactive markers that can be detected by x-rays and are used to see how well the various chambers in the heart are functioning. So I'll be radioactive for a couple of days. Last time they did this, they gave me a special card to show at the airport since apparently people who have undergone MUGA tests can set off detectors used to check for nuclear components. Weird. Then I have a clinic visit later on today.

Wish me luck!

Day +73 - Stomach virus, or GVHD of the gut?

2009-04-11T00:32:00.000-07:00

Happy Easter! This cute coffee art was on my latte last week at Cloud City Coffee, one of my favorite neighborhood coffee shops. We've started our daily walks again, a little earlier than usual at 6:45 am so that Johanna can join us and still get to work on time, and Cloud City is our regular destination. Our friend Jenny gave me a pre-paid card with 10 double-short lattes on it, so I've been using that. It feels good to be walking again.

I'm happy to report that my cold symptoms are 95% gone and my last blood test was negative for the gram-positive blood infection I tested positive for last week. I'm off the IV infusions which is great too, even though the baby bottle infusions were pretty simple.

The bummer is that I've come down with some sort of stomach virus. It started a few days ago and I've been having stomach cramps every few hours and riding the white ivory throne pretty regularly. It's no fun. I'm also experiencing nausea and loss of appetite. It doesn't help that I don't enjoy eating as much knowing that I'll be in the bathroom in half an hour. I'm also experiencing an incredible amount of fatigue. I've been sleeping from about 11am until 6pm every day. It's a little discouraging. The walks have been ok, but I can't go a full walk without enduring painful stomach cramps. And as much as I want to force my body to be energetic, each time I get up it's all I can do to keep from wanting to lie down again. It sucks. Coffee doesn't seem to help either. We reported it to my nurse and he called me in for a stool sample, since frequent diarrhea can be a huge problem since it dehydrates the body quickly. A lot of patients end up back in the hospital or on IV fluids. I've been drinking a ton of water to try and avoid this. We'll know next week whether it's an infection or GVHD of the gut. We're hoping it's a virus or an infection, since GVHD of the gut can be hard to treat and can least for years. On top of all this, I've been suffering from some pretty nasty migraine headaches the last few days, so it's been a perfect storm of miserableness.

I feel like the last few weeks have been one step forward and one step back. Luckily, my blood counts have been doing great which I suppose is the real measure of my success. I guess it's sort of like putting a rebuilt engine in your car and finding that the new engine runs perfectly, but that there are some squeaks and rattles in the rest of the car that need to be taken care of. I think the fatigue has to do with the fact that my body has been busy fighting all these infections and is simply exhausted. The steroids have the effect of artificially pumping me up with energy. So as we continue tapering down the dose, I'm starting to see more and more what my post-transplant body looks like, and it looks like it's pretty worn out.

I can't complain too much, since last weekend the weather was awesome and I was feeling great and took the scooters out for some much-needed riding. It was the first ride of the year and it felt exhilarating. They both started up great, and after a little bit of oil and maintenance and checking the tires, they ran perfectly. I've got 7,500 miles on the Vespa and hope to put on a few hundred more in the next several months.

The next milestone is Day 80, which is when I meet with the attending physicians to discuss my discharge date, usually around day 100. This is when I'll leave the SCCA to go back to Dr. Goldberg, my primary oncologist, to discuss and plan my long-term care. Between Day 80 and 100 I'll be doing a whole series of tests, including another bone marrow biopsy, chimerism tests to see what percentage of blood cells are host versus donor, and bone density tests to see how much bone mass I've lost since the transplant. I can't believe the days are flying by so fast. It seems like I'm constantly filling my pill box with another week's worth of pills.

Here are a few pictures of stuff that's happened recently:

An old picture, but it captures exactly how I felt when I took the scooters out.

Cute picture by one of our favorite local artists, Justin Hillgrove. Johanna says I'm the happy robot and she's the little bird.

Johanna working on the garden.

Day +64 - New staph infection (Gram positive cocci)

2009-04-01T15:18:00.000-07:00

If it's not one thing... Today I tested positive for gram positive cocci, which is a type of blood infection that includes staphylococcus infections. I'll be receiving Vancomycin antibiotics via IV infusions every 12 hours for the next 7 days to treat it. The bacteria lies dormant in everyone's system but can activate when you're immunosuppressed. Having a gram positive infection is better than a gram negative infection, which can require a hospital stay and close monitoring. This is just a preliminary result, and we'll know exactly which type of gram positive infection it is as the culture continues to grow. We suspect I got it as a result of my immune system being overtaxed due to the cold I'm currently suffering from.

It's a few hours after they called, and I'm in the triage infusion room at the SCCA getting my first dose of Vancomycin antibiotics, blogging away and playing on the web. Having wifi at the clinic is such a treat. The infusion takes 90 minutes which isn't too bad. Luckily I can do the rest of the IV infusions at home. The picture above is an example of the bottle of IV antibiotics that I'll be administering at home for the next week. It's simpler than an IV pump, since it just consists of a pressurized rubber balloon containing the antibiotics inside a plastic bottle. The balloon causes it to infuse at the correct rate, so there's no need to mess around with programming the IV pump with reservoir capacities and infusion rates and such. Apparently the previous system was just a balloon by itself, and the folks at the clinic used to call it the "grenade". Now that the balloon is housed in a little plastic bottle they lovingly refer to it as "the little baby bottle pump".

I was a little bummed to hear about testing positive for this new infection, since I was already feeling a little miserable today because of the the cold I have and the fact that I've been feeling groggy and sleeping a lot because of my latest steroid taper schedule. I actually got the call from the clinic this morning while I was in the middle of a nap, wanting me to come in to the clinic immediately to get the antibiotics, so I was groggy and already feeling miserable. But the staff at the SCCA clinic are just great and really know how to take care of their patients. After arriving at the clinic I was shown into my infusion room with a nice, comfortable chair and a warm blanket. After the infusion started, the triage nurse brought me a hot bowl of chicken noodle soup, crackers, and a bunch of Oreo cookies. She remembered me from last time and we chatted a bit about the weird snowy weather today. The clinic has wifi so I've been happily playing around on the web, chatting to friends online, eating my soup and snacking on cookies. And just now, the Apria homecare delivery person stopped by to tell me how to use the new pump, and to let me know that everything has been taken care of regarding my next week's supply of antibiotics and that a delivery person should show up at my house tonight with the supply. It really makes a difference when everyone is on top of things and everything is taken care of. I'm continually impressed by how things are so well-run around here.

Lately it seems like I've been complaining a lot, ever since I came down with the urinary tract infection a few weeks ago. That cleared up, then I had a nasty wound on my inner thigh when a bunch of skin peeled off after removing the adhesive tape from a recent skin biopsy. That made it hard to move and walk around since the wounds rubbed against my clothes, but that finally cleared up. Then I came down with a cold and have been feeling miserable for the last week because of it. The cold symptoms seemed to be clearing up, but then yesterday my ears plugged up after a lot of nose-blowing. I can handle a cold, but I hate it when my ears plug up since it usually lasts about a week and it's really annoying, and when it happens I've often ended up with an ear infection. Then I started having nasty migraine headaches a few days ago. Now I've got this staph infection. I keep expecting things to continually improve as the days go by, so sometimes I get discouraged when things like this pop up. Johanna says my expectations are too high, and that I'm doing pretty damn good all things considered. I guess I agree. It's probably just a result of feeling miserable and down because of the drugs I'm taking. I've started walking again which has been a huge help, and already I feel better getting such great care at the clinic and knowing that I should be able to kick this staph infection in the butt. I don't even have a fever or any other symptoms (knock on wood), so it could be a lot worse.

I'll post updates on how things are going soon.

Day +57 - PUVA, UTI going away, cold symptoms

2009-03-26T02:28:00.000-07:00

Johanna and I celebrate a long week with a banana split hot fudge sundae!

Well, the steroids must be kicking in because it's 2 in the morning and I've got a bunch of newfound energy. I just finished folding the laundry, emptying the trash, downloading 3 new CDs from Amazon.com, and cleaning the house. I'm on a chronic GVHD taper schedule at the moment, which means that I alternate between 15mg and 60mg of Prednisone each day and the steve-totally-wired effect seems to be delayed by about a day. Yesterday was the 15mg dose, and today I was worthless all morning and afternoon. I started by taking Johanna to work, dropping by the SCCA clinic for my regular dose of tanning bed treatment to help with the GVHD, then I headed back home, watched a movie, and fell asleep on the couch for a couple of hours. After I woke up, I thought I should probably get more sleep to help fight off this newfound cold I caught, and went upstairs for another few hours of sleep. By then it was around 4pm, so I dropped in to watch my dad put in sheetrock at my sister and brother-in-law's basement, then I headed back home where I lounged around again, totally unmotivated to do anything until Johanna came home. It wasn't until after dinner that the 60mg dose of steroids from this morning finally kicked in, and here I am, totally wired and ready to re-organize the garage, the house, you name it. Tomorrow I expect it to taper off again, and by the next day I'll probably be totally worthless again. It's a weird life I lead.

These last 2 weeks have been the roughest so far. My uncle commented the other day, "suck it up!", and that made me laugh out loud. I remember thinking back to when I read Into Thin Air, the book about the climbing disaster on Mount Everest. The thing I thought was most interesting was that most of the folks that tackle Mount Everest aren't great climbers. In fact, many had never climbed before at all and go to Mount Everest with brand-new gear they may have never even tried on. But they all have one thing in common, which is a total determination and drive to make it to the top of the mountain no matter what. Their stories include them going up with broken ankles, broken toes, splitting headaches, lack of food and water, and all kinds of colds and coughs and respiratory diseases, but it doesn't stop them from pushing to the top. So I was thinking, I bet these guys would just laugh off a urinary tract infection like it was a chapped lip. Anyway, I'm not sure I'll ever have that kind of determination and drive, but I am happy to report that the UTI has cleared up for the most part, which deserves a huge halle-freakin-lujah, and has put me in a much better mood the last few days. Guys, it's reported that women will suffer from UTI *50* times more often than men during their lifetime, so say something extra nice the next time they come down with it.

I've totally fallen off the bandwagon as far as my daily walks go, and it's affected my mood in a big way. Now that all these annoyances are finally clearing up, I'm looking forward to getting back into the swing of things. I'm way behind on my Planet Money and This American Life podcasts as well.

Here's what's has been going on.

Last weekend I came down with a nasty cold. Johanna picked it up from work, so it was pretty much impossible for me not to avoid it. The surprising thing is that I didn't come down with a fever, so other than dealing with a runny nose and a cough, it hasn't been unlike getting a cold when I've been healthy. I was worried that if I ever came down with a cold during this time, that it would be an immediate trip to the hospital along with shaking chills and awful fevers. So either the antibiotics or the new stem cells are doing their job. Yesterday was probably the worst day as far as cold symptoms go, so the cold may already be clearing up. The only annoying part about this whole cold thing is that when I go to the SCCA I'm technically in "Respiratory Isolation", so I have to wear a mask everywhere I go and all the nurses and doctors have to gown up around me. I also have to sit in specially designated areas in the waiting room, and people generally treat me like a pariah even though they don't realize it. It's understandable I suppose, since I was pretty paranoid too when I left the hospital, but it's hard to feel normal when all the formalities make you feel like such a sick person. I even got in trouble last Monday for entering a crowded elevator, since folks in respiratory isolation are encouraged to take empty elevators. Argh! The clinical trial that I'm on, the one where I visit the "snot guy" every week, detected that I had the virus last Friday before I even started having symptoms. So they immediately reported it to the clinic which called me to tell me about it right after, so it's impossible to try and hide it even if I wanted to :) I have to admit it is pretty neat to be under such a level of care that you're notified when you have a cold virus before you even know it.

My skin biopsy for skin GVHD came back positive last week, which wasn't unexpected. We assumed it was GVHD, but the main point of the biopsy was to rule out a rash due to the Voriconozole anti-fungal medication I'm taking. Between 50% and 90% of transplant patients get GVHD of some kind, so it's not really a cause for concern. I feel lucky since my GVHD seems to be only affecting my skin. Other organs that can be affected include the liver, the gut, the bladder, and the eyes. Gut and liver symptoms may come later for people that get acute GVHD, the kind that occurs within the first 3 months after transplant, so I'm keeping my fingers crossed. It can take up to 5 years to be fully rid of GVHD, but like I've said before, everyone who has it says they would much rather be dealing with GVHD and alive than the alternative. The best treatment for GVHD is prevention, which is why I'm on a cocktail of immunosuppressive drugs including the Prednisone steroid, Tacrolimus drug, the Methotrexate chemotherapy I received after the transplant, and other drugs like Ciclosporine. I'm also using a topical corticosteroid that I rub into my hands twice a day.

To help with the overall skin GVHD, we started something called PUVA therapy last Monday, which stands for Psoralen and UV-A light. Basically it's tanning bed therapy, which seems strange since they keep stressing that I need to use plenty of sunblock when I go outdoors, since even a small sunburn can cause GVHD to flare up which would require a bunch of steroids to get it back under control. So when they said they're going to treat me by having me take drugs which would make me extremely photo-sensitive then subject me to direct UV radiation, I was a little worried. But the UV radiation only lasts 30-60 seconds. It's just long enough to feel nice and cozy under the warm lights, then it's all over. I've had 2 sessions so far, and it takes longer to get undressed and dressed than the therapy itself. Each morning I take these funny-smelling green pills called Psoralen, the drug that causes photo-sensitivity, then I head down to the SCCA's tanning bed therapy room where I put on these tiny green swim goggles with UV protection and a special UV lip balm, then strip down and get in the tanning bed. It takes less than a minute and I'm done for the day. Unfortunately, the Psoralen drug stays in your system for 24 hours, so I have to be even more careful than normal about being in the sun for the rest of the day. They've been doing PUVA therapy for 20 years, and the results are pretty good. In some cases the skin GVHD has cleared up entirely after 5-15 sessions, so it's seems pretty worthwhile compared with the alternative types of treatment like steroids and other drugs. There is a small risk of skin cancer later, but again, the risks of steroids and the other drugs are relatively worse.

Not a lot else has changed in my schedule. We're trying to wean me off the IV magnesium and stopped it last week, so now I'm taking 8 tablets of the oral magnesium each day. Like milk of magnesium, this can affect your bowel movements in a not-so-good way (i.e. diarrhea), but luckily I've been able to tolerate the higher doses. Unfortunately, my most recent counts showed my magnesium levels starting to get dangerously low, so we had to order a one-time bag of IV magnesium yesterday to get it back up. Hopefully things will stabilize a little bit, but this is an example of how closely I'm being monitored. As another example, they noticed my phosphorous levels were low and recommended a change in diet for the next week. It definitely takes some effort to make sure I'm staying on top of this stuff. Even forgetting one dose or forgetting to flush my Hickman line can be a problem.

I was also a little depressed last week when I heard that a fellow blogger of mine, Michelle, relapsed at day 110 or so, after having perfectly good counts and an excellent prognosis during the entire 110 days after her transplant. She had already gone back to San Francisco to get back to a normal life, and is now having to deal with whether to come back to Seattle to re-do another transplant or start on more chemotherapy and treatment. My heart goes out to her. It reminds me that we can't take any of this for granted.

Anyway, maybe I'll have some pictures of me with a tan for the next post :)

Yum, home-made Pad Thai.

Blurry picture of Dad and Brian working on their basement.

Brian measures the insulation for the new walls.

Over and out.

Day +51 - Feeling miserable (I complain day)

2009-03-19T23:39:00.000-07:00

There's no other way to put it, but this last week and a half has been miserable, mainly because of the urinary tract infection that I'm still suffering from. It's affecting my sleep schedule in a big way since I can't get more than an hour of sleep without waking up with a huge urgency to pee, so all day long I'm exhausted and tired, like I've pulled an all-nighter for a week. Each visit to the restroom is painful as well. Essentially the inner lining of my bladder is sloughing off and pieces of the tissue, some liquid blood and some congealed blood all pass through the urethra and out of the body each time. This is very painful. And it happens every time I hit the restroom, which is basically all day and all night long.

I get worried now about running errands or picking Johanna up from work that I might not make it. It's an awful feeling and generally just causes me to stay indoors even more. When standing or walking there is a general ache down there all the time, not unlike the after-ache of being gently kicked in the testicles. I've found that sitting and lying down are the only way to make it feel better. So that's caused a lot of problems in my daily routine since I'm not walking as much, which makes me feel even worse. It's an awful cycle. Drinking massive amounts of water helps the pain by diluting the amount of blood in the urine, but this just causes even more trips to the restroom :(

The tests last Tuesday showed that it's not a bacterial infection, which is good, since it means it's not something that can spread into the kidneys and cause more problems, but it's not as good since bacterial infections can be treated with antibiotics relatively quickly. A bacterial infection is the kind of urinary tract infection most people get, especially women. In my case, I'm suffering from a reactivated BK virus which is a virus present in more than 80% of the population. Normally it exists in a dormant state, but in patients who are immunosuppressed this virus can reactivate and cause an infection. The downside is that the treatment for BK virus can cause havoc on one's bone marrow, so the doctors prefer not to treat it. Tests were run for the BK virus in my urine and in my bloodstream, and they found incredibly high levels in my urine but not in the peripheral blood, which is good. If they had found high levels in the blood they would have consulted with the infectious diseases team and considered giving me the treatment anyway. But they didn't find high levels in the blood, so I'll just have to suffer through it. For most patients, it goes away after a few weeks to a month, sometimes longer. Here's hoping it goes away sooner than that.

The doctors have been watching my skin for GVHD now that I'm tapering off the Prednisone steroid, and we've started noticing just a little bit on my arms, thighs, and hands again. When I was in the hospital, I got graft-versus-host disease (GVHD) very quickly after the transplant. They called it hyper-acute GVHD, and loaded me up with a super high dose of steroids (180mg/day). The GVHD went away a day or two later, and the purpose of the taper schedule is to slowly reduce the steroids until the GVHD just starts to return, but not give it a chance to flare up again. If it flares, we'd have to restart with another high dose again to get it under control. So it's a delicate balancing act. Right now I'm on a very coordinated dose of 60mg one day, then 15mg the next day, then 60mg, then 15mg, then 55mg, then 10mg, etc. This taper dose is more slowed down than even before, and there is no end date anymore. Before it was going to end in March, then April, and now it's indefinite, so that's a little bit of a bummer.

One of the doctors suggested that the skin rash may be due to the anti-fungal antibiotic I've been taking for months, the visual disturbance-inducing Voriconozole, so the doctors brainstormed and ordered a skin biopsy on my thigh to rule out one or the other. During the biopsy, they use a razor-sharp hollow tube to basically take a little core sample of your skin. The biopsy went great, but the sterile tape used to cover the wound made a mess of the delicate skin on my thigh. All of the skin on my body is really thin right now, and when I went to peel off the tape from the biopsy spot 24 hours later, several pieces of skin came off with it along with a lot of hair. Argh!! If it's not one thing, it's something else. I could barely walk around the day I took it off.

Here's a picture of my inner thigh below. See that nice little hole in the middle? That's where the skin was biopsied. No pain there at all. See all those little bacony strips? That's missing skin. Those hurt like crazy.

Ow.

I've had to be creative with gauze and stretchy hose to cover the whole thing. Johanna even suggested using a maxi-pad which worked well too. I'm still annoyed that the tape caused more problems than the stupid biopsy itself.

On a good note, I'm off the IV magnesium! I've been loading up on more and more of the oral magnesium pills, and so far my gut and stomach have tolerated it just fine. They'll be looking at my magnesium levels closely after the blood draw tomorrow, so being off the IV magnesium may be short-lived. But at least we're making progress. The groin rash and armpit rash are finally resolving too. I've also started a taper schedule on the Tacrolimus drug, another drug that prevents GVHD. Instead of 1.5mg twice a day, I'm down to 1 in the morning and 1.5 in the evening. The Tacrolimus drug depletes magnesium which is why I need supplemental magnesium to keep me going, so reducing the Tacrolimus dose should help things as well. I really like it when progress is made to reduce the amount of drugs going in me.

In other good news, I'm at Day 51, halfway to Day 100 when folks are normally discharged! I still can't believe how fast time is flying by.

Tomorrow I have a blood draw, a visit to the snot guy, then a clinic visit and that's it. I'm hoping I can get back on the bandwagon again and get a good walk in tomorrow. Each day I don't walk it makes a huge impact on the way I feel, from being motivated, to having energy, and just my general well-being. It's amazing how much of an impact it makes.

Firefighter Stairclimb

2009-03-11T20:08:00.000-07:00

Every year, firefighters from around the world compete in the Firefighter Stairclimb up Columbia Center in full fire gear, masks, and oxygen tanks to help raise money for the Leukemia & Lymphoma Society. It's a whopping 69 flights of stairs up one of the tallest buildings on the west coast. This year, 1500 firefighters competed in the competition and one of them, Dan Nelson, ran the competition in my honor! Dan is Johanna's chiropractor, and he's also a firefighter who competes in the stairclimb every year. I've met him a couple of times and he's a great guy. There is even an article about his climb in the latest issue of Seattle Metropolitan magazine.

Here's a quote from the Seattle Met article:

Nelson, who didn’t become a firefighter until he was 44, trained for the department’s qualifying endurance test by hauling 100-pound sandbags up Laurelhurst’s cruelest hills. Right up until the day he tries to conquer the Columbia Tower, he’ll be scaling stairs at Husky Stadium—with an air mask and 60 pounds of gear instead of sandbags.

Unbelievable! He's just over halfway to reaching his funding goal. You can help him out by making a donation at his web site.

Day +42 - UTI and hand cramps

2009-03-10T07:19:00.000-07:00

Here's a picture of me blowing out candles on my *other* birthday. Yeah, the one where you celebrate getting older instead of celebrating new life :) Maybe my new birthday will cancel out my regular birthday and I'll just stay this age! For my birthday my mom made strawberry shortcake and Cindy and Brian brought over a home-made ice-cream creation called Steve's Lucky Birthday Ice Cream, which they had painstakingly made by digging out marshmallows from Lucky Charms and adding them to the ice cream. I ate Lucky Charms as a kid by eating all the cereal first and saving the marshmallows for last, so that was pretty cool.

Late Sunday night I started developing what seems like a urinary tract infection. I called the nurse Monday morning and he sent me in for a urine sample. I have a clinic visit today and we'll see what the results are. I'm hoping we can get it cleared up in a few days. As you can imagine, the motivation to try and drink 3-4 liters of water a day goes down significantly when you know you're going to have to painfully pee it back out again. Infections of any kind are expected, and since this would be the first infection after the transplant I'm still doing pretty good.

The other weird issue that started last night is that I'm experiencing sudden cramping in my hands and fingers. And I mean really painful cramping, where my hands and fingers would just curl into a claw and I couldn't move it. It started when I was cooking dinner and I'm still seeing minor signs of it this morning. Another thing to talk about with the doctors today.

The good news is that the other parts of my body are continuing to heal nicely. My eyes are almost 90% normal, with just a little bit of redness below one eye. But they're not scratchy or itchy and I feel like a normal person again. The puffiness in my face and legs continues to subside as I taper off of the Prednisone steroid, and my weight is starting to come back up again. The dry/cracked skin on my hands is improving each week. Up until last week I was using Eucerin creme twice a day, which is like a petroleum jelly, just to keep them from cracking. Now they look the same color as the rest of my skin and are mostly back to normal.

My main issues/annoyances now are:
- urinary tract infection
- sudden hand/finger cramps
- rash on inner thigh
- tremors
- "hot hands"

Ever since I've been in the hospital I'll go through several hours a day where my hands feel hot, as if I'm holding them over a hot burner or am holding on to a hot plate. I think this is due to the Tacrolimus medication, one of the medications that prevents GVHD. My hands aren't actually hot to the touch, but the sensation for me is that they're being subjected to very hot air, so I find I have to be careful running them under water or touching objects since I can't tell how hot anything is. Even lukewarm water feels like it's boiling. Plus, it's just annoying when you're trying to do normal stuff and you can't get your hands to cool down.

The home delivery started yesterday for my supplies and prescriptions, and it looks like this will be really convenient. Every Friday after my blood draw, they'll call the SCCA to see if any of my prescriptions need to be changed based on the results of the blood draw, then they'll call me to see if I need any additional supplies. It will be great to be on a regular schedule since up until now we've picked things up as needed each time we're at the clinic, but it's easy to forget. I returned the old IV pump and backpack, and Apria delivered a new one with a much cooler side-holster bag to hold the IV pump and fluid. Basically it's like a tall water bottle holder, and since it's so narrow it snuggles up more closely on me and doesn't slide around. I guess I've upgraded from the "IV Purse" I've been using :) Here's a picture of the new holster bag, the IV magnesium bags, and the various things I need to get hooked up each day.

Day +35 - Couple more bits of good news

2009-03-03T23:06:00.000-08:00

Today I had my last transfusion of Mesenchymal stem cells. The transfusion itself doesn't take very long, but there is a 2-hour follow-up period afterwards so that the nurse can check vital signs every 30 minutes to make sure there aren't any adverse reactions. Luckily the SCCA has wifi and a kitchen with snacks like cookies and ice cream and foods like mac & cheese (yum), so the time passes by relatively quickly. I've also been sending my mom out on errands each time to pick up supplies and prescriptions so that we make the best use of the time, since sometimes it takes multiple trips to the pharmacy or supply cabinet. But each visit ends up being about 4 hours total so it's nice to be able to cross this off as one less thing I need to do.

During the transfusion the doctors came by for a visit and there wasn't a lot to talk about since my counts are looking good and we're not seeing any adverse side effects or GVHD. The good news is that they are starting me on oral magnesium pills tomorrow, which means that we're starting down the path to ween me off of the IV magnesium. The reason I've been on IV magnesium is that the oral pills can wreak havoc with your digestive tract, so for people who've just had a transplant it's not an option since your digestive tract is completely screwed up. But now that mine is returning to normal, we'll start with a low dose of oral magnesium in addition to the IV magnesium to see how things go, and if everything looks good we'll increase the oral dose until I no longer need the IV bag. Even though it only takes an hour to infuse the IV magnesium, it will be nice to have one less task to plan and take care of during the day.

The other thing that's changing is that my supplies and prescriptions will be delivered directly to the house starting next Monday, instead of me picking them up from the clinic every few days. This is great, since I'll be able to just call in an order and they'll stop by with the goods. Sometimes I've had to run over to the SCCA on weekends for more IV magnesium bags, for example, since they only give me 3-4 of them at a time. Having everything delivered at home will be awesome.

Then, on top of all that nice news, my nurse said he would suggest to the team that I only come in for clinic visits once a week. Woohoo!! It makes sense, since my visits will now just be for blood draws (15 mins), chest x-rays (15 mins), seeing the doctors (30 mins), seeing the snot guy (15 mins), and meeting with the nutritionist (15 mins). And I bet my awesome team scheduler, Troy, will book them back to back so that I'm in and out in no time. I'm very excited about this, since the less time I spend at the clinic, the more I feel like a normal person.

Being able to check these things off the list makes me feel like we're really making progress, and it feels great :)

Day +33 - Pathologist's report

2009-03-01T23:09:00.000-08:00

Here's me looking happy after re-reading the pathologist's report from the bone marrow biopsy I had last Monday. You can also see that the whites of my eyes are finally starting to become visible. My eyes are less itchy now too, and they aren't getting wet and blurry all the time. The technical term for what happened is that I had a subconjunctival hemorrhage, and now that the itchy, blurry side effects are gone I feel that much closer to feeling normal.

The pathologist's report is a multi-page document detailing the results of the various tests that are run on the bone marrow biopsy and aspirate samples. The biopsy is the "core sample" taken from the hip bone and the aspirate is the bone marrow liquid that's sucked through the little corkscrew they stick in your hip. What was exciting, or non-exciting I suppose, about this report was that the overall final diagnosis was the shortest description I've seen on a pathologist's report so far. Essentially, there wasn't anything to talk about! Here's how it reads:

Final Diagnosis: Bone marrow 27 days post-transplant showing normocellular trilineage hematopoiesis with no evidence of dysplasia or increased aberrant myeloblasts.

Those have to be the sweetest words I've seen in a while. The phrase "normocellular trilineage hematopoiesis" means that the blood stem cells are maturing normally into all 3 blood components (red blood, white blood, and platelets), and the phrase "no evidence of dysplasia or increased aberrant myeloblasts" means that there are no dysplastic (abnormal) blood components or stem cells to be found. Basically, these flow cytometry and various other tests they run are the most sensitive kind of tests for this stuff, and can pick a single abnormal cell out of billions. Normally the final diagnosis includes several paragraphs on all the abnormalities and dysplasia found in each of the blood types, the presence of excess blast cells, irregularly shaped blood components, and lots of other esoteric problems which I'm sure gets the lab technicians all excited. So it was really inspiring to see such a short and healthy description.

It's been a month since the transplant and it already feels like 3 months. The days are flying by and we'll be at the next milestone on Day 50 soon. The next milestone after that is Day 80, when the SCCA lab will run chimerism tests on my blood to see what percentage of blood components are mine versus the donor. Technically I can be called a chimera, a person composed of two genetically distinct types of cells. In Greek mythology, the Chimera was an awesome fire-breathing monster with the head of a lion, the body of a goat, and the tail of a serpent, so maybe being a chimera is pretty cool :) Though the mythical Chimera was killed off by Bellerrophon, the guy who rode Pegasus, the famous winged horse. I'll make sure to be on the lookout for flying horses during my walks.

My white blood counts are finally starting to come back down, after skyrocketing off the charts as a result of the high dosage of prednisone steroids I was on for the first few weeks. I'm now down to 80 mg a day from 180 mg a day. The recovering white blood counts along with all the other good news lately puts a visible look of satisfaction on all the doctors I talk to. Here's a look at my latest white blood counts:

The only new issues that have crept up are these painful rashes in my armpits. Apparently Busulfan, one of the chemotherapy drugs I received before the transplant, stays around in your system and ends up as a toxic component in your skin. Anywhere your body rubs together causes a rash because of it, since the skin gets irritated by the toxicity. It's pretty painful when I lift my arms up, and the skin is broken and red under there, so I have to use powder regularly to keep it dry. The areas that aren't broken have this dark color, which then peels off to reveal new white skin underneath. It's really weird to see. The doctors say it's not uncommon and not to worry. The important thing, they remind me, is that it's not graft versus host disease (GVHD), so other than being super irritating, it's benign.

For the last few days not a lot has been going on medical-wise besides picking up supplies, doing my normal IV fluids or having Johanna change my Hickman dressing. I've been keeping busy eating, playing on the MacBook, staying clean, walking a few miles a day and working on little projects around the house. Friday afternoon I had coffee with some friends from work, some of whom I haven't seen in 2 months. We camped out at the outdoor tables at the pizzeria near our office, munching on pizza and chatting and watching the people go by. I could hang out there for hours doing that, and it was nice to be around my friends again. I think every other Friday I should stop by for more pizza, coffee and socializing.

Last Thursday we had snow, and I'm always happy to have snow in Seattle since it really doesn't last long and adds some variety to the place. Tonight we tried our hands at some pizza using fresh pizza dough from Pasta & Co and trying to get it as thin as possible without tearing. We have a little pizza stone and bought a wooden pizza flipper today, which is the key to getting the pizza on and off the stone. Our 3rd attempt finally produced a really nice thin crust, just like Italian pizzas!

Last Thursday's snow melting off the flagstone path

Our pizza adventures finally produced a nice thin crust. Yum.

Day +29 - Preliminary results from biopsy are good!

2009-02-25T11:45:00.000-08:00

The flow cytometry tests from my bone marrow biopsy came back negative, which means my marrow is functioning normally and there are no signs of the disease. Woohoo! The pathologist's report isn't ready yet, but this is great preliminary news.

Yesterday was a pretty long day at the SCCA. The infusion rooms were full and we had to wait a while to get in and then the Mesenchymal stem cells were delayed even further at the lab. So after a blood draw in the morning, I was back again for the infusion from 1:30 until 6. Luckily I only have one more of these infusions to go. I picked up a few more bags of magnesium IV fluid, and then it was over to pick up Johanna and head home. It's amazing how many supplies are required for my daily maintenance. I have to be diligent about keeping track of when my saline and heparin flushes and all the other various supplies like IV tubing, alcohol preps, Hickman dressings, parafilm, and tape are running low. On top of that, I only get 4 IV bags of magnesium at a time, so I have to remember to visit the pharmacy whenever I'm there to pick up more, which requires getting in touch with the RN if the order hasn't been sent down yet. On March 8th I'll be switched over to a home-delivery service which will be great.

A couple of days ago I started getting a rash in my underarms, which has now started becoming painful, and I was concerned it was a resurgence of graft-versus-host disease (GVHD) now that I'm tapering off the Prednisone steroid. But the doctor said it was just a chafing issue. I thought that was weird, since I've never chafed there before. Johanna had mentioned the night before that maybe I was losing my underarm hair, and I was like "no way". But I took a closer look in the mirror and lo and behold, there's no hair there! The conditioning chemotherapy I had for the transplant has caused a lot more hair loss than the induction chemotherapy. My head and face are completely follicle-free, and I haven't shaved in weeks. The rest of the hair on my body is probably 30% of what it was before, and my eyebrows are now starting to thin quite a bit. I'm not sure when it will start growing back, but with my puffy face and almost hairless body and still-weird eyes, I look like a pretty funky dude.

The other annoying thing is that my lips are constantly chapped, and I've determined that the skin there is sloughing off about every 3 days. So they're either in a state of being chapped and peeling, or fresh and pink and sensitive.

Finally, my eyes are clearing up and you can see more white in them, but I get blurry vision and teary eyes a lot now. It's a result of one of the medications, but it really makes it annoying trying to do anything like work on the computer or read or drive. I usually have to rest my eyes for an hour every few hours to keep them going.

Other than that, things are great :) I'm tasting more and more foods, and my appetite is still ravenous, even though I'm tapering off the Prednisone steroid and am only taking half the dose I was taking at the beginning. The dose will continue tapering down until it hits 0 on March 20th. I'm a little anxious about this, since I'm wondering how much the steroids are masking how I'm really feeling. The docs expect me to feel more fatigued, less motivated, less hungry, and possibly nauseous once I'm off the steroids, so we'll see how it goes.

Today and tomorrow I have no clinic appointments, which is awesome. This morning my dad and I walked Johanna to the bus stop and then we continued on to Cloud City Coffee and back home for a nice 3-mile walk. I'm looking forward to puttering around the house and working on fun projects all day.

Day +27 - Milestone bone marrow biopsy

2009-02-23T18:00:00.000-08:00

That's my portable IV pump and magnesium bag, sitting on my "IV purse", a little travel bag that I borrowed from Johanna. The backpack from the SCCA is great, but I found it's overkill for what I need right now, since the backpack has elaborate pouches and velcro straps meant for the big IV bags of fluid and it can take a few minutes just to lock everything down. With the magnesium, I can just drop everything in the purse and it's no problem. I've gotten the hang of this infusion business so that now that I can spike the bag, prime the tube, program the pump, flush my Hickman, drop everything in the travel bag, and be back up and about in just a few minutes. Unhooking is even quicker.

My dad picked us up at 6:30 am this morning for my first bone marrow biopsy after the transplant. This will determine how well the new stem cells are engrafting and whether there are still signs of the disease. All transplant patients have this bone marrow biopsy on or around Day 28, so it's a big milestone. Up until this point we've only assumed that things are going well with the engraftment, but the biopsy will give us an accurate determination. After a quick blood draw, it was time to get sedated :) As I'm falling asleep, the room quickly fills up with various people, including my doc, the lab guy who will collect the specimens, the technician performing the operation, and the sedation guy. My dad and Johanna stayed in the room to watch.

The biopsy went great, and I'm hardly even sore. But to ward off any future soreness, I took a 2-mile walk with my dad to my favorite coffee shop, and it felt good to be outside and active. I've noticed if I just sit around after a bone marrow biopsy my hip will be sore for days, which makes it hard to get in and out of the car, among other things. Hopefully we'll know the results of the biopsy in a day or two.

Last night Johanna changed my Hickman dressing for the first time and she did a great job. Two sets of gloves are required, and there is a lot of sterilization and scrubbing involved. The dressing is basically a super-sterile piece of adhesive plastic with a small "bio-goo" square in the middle that covers the entry site. The bio-goo releases Chlorhexidine, a chemical antiseptic. The nice thing about the Hickman dressing is that it's waterproof, so all I need to do before showering is to cover the ends of the catheters with a special parafilm wax, and that's it. With the PICC line, I had to saran wrap my arm with tape (hard to do by yourself) and the tape was constricting when showering and painful to remove. The Hutch has really done a lot to make the Hickman dressing as unobtrusive as possible and are constantly making improvements. In fact, this new all-in-one dressing with the "bio-goo" attached was just put into use in 2009.

This weekend we had lots of awesome food stuff going on. We started Saturday morning by making 22 breakfast burritos to be frozen for eating later. I'm in love with New Mexico style breakfast burritos, with scrambled eggs, hot green chiles, hash browns or potatoes and fresh, flour tortillas. Now that one of our favorite grocery stores, Central Market, makes fresh flour tortillas right in the store we've been making burritos to be frozen. So Jenny and Greg came over, and we had a fun time making an assembly line and making all the burritos.

Sunday morning Nic and Rachael came by and we served them up some awesome blueberry buttermilk pancakes with lots of bacon on the side. I have a favorite recipe for buttermilk pancakes, and the blueberries knocked it out of the park. I'm definitely going to use blueberries again. We then did a 2-mile walk to Cloud City Coffee and back and chatted all along the way. It's nice to see our West Seattle friends :) I should go over there to do some of my walks.

Sunday night, Simon and Justine came by and treated us to a smorgasbord of delicious pizzas, all from scratch. Simon's a bit of a foodie and brought in a tray of 8 perfect little balls of pizza dough that he had made the day before, along with a bunch of fresh ingredients including buffalo mozzarella, peppadew, arugula, pesto, sheep's milk feta, mint, and this amazing home-made tomato sauce. He even made sure all the ingredients were pasteurized and fit the food requirements for me to eat. He heated up his pizza stone, and started making pizzas one after the other with various combinations of toppings. It was heaven.

Tomorrow morning I have a quick blood draw. Then in the afternoon a visit with the nutritionist, another infusion of Mesenchymal stem cells and a clinic visit with the doctor. Hopefully the infusion will go as fast as the last one. Oh, and in other news, I'm finally not in contact isolation anymore, which was a designation I was given after discovering that I had the c.diff virus while I was in the hospital. Instead of normally worrying about getting infected by others, the presence of c.diff meant that the clinic staff had to protect themselves against me so that they wouldn't pass the virus to other patients. So each time I go in for a clinic visit or blood draw at the SCCA, all the nurses and doctors and technicians have to wear gloves and gowns around me. And each time I use the restroom there I have to flip over a sign on the door that says, "DO NOT USE", which instructs the cleaners to bleach clean the bathroom after I use it. It's been a pain, so it's nice to finally be out of contact isolation.

Day +24 - Clinic appointments

2009-02-20T23:12:00.000-08:00

After a quick blood draw and a visit to the snot guy this morning, my parents and I left the car at the SCCA and walked about 3 miles up and around Capitol Hill, stopping at a spacious Starbucks to fuel up and enjoy the morning. There is an overpass we walked along that overlooks the entire SCCA campus, and my dad snapped a picture of me in front of the main building. I can point out about a dozen windows that I've been in.

After lunch, I had another transfusion of Mesenchymal stem cells and a clinic visit by the attending physician. I learned a few new things I didn't know about. For example, my white blood cell count is continuing to skyrocket and is much higher than the normal range now. It's at 24 and should normally be between 4 and 10. The doctors explained that the Prednisone steroid is responsible for this, which causes the bone marrow to forcefully push white blood cells into the blood stream. Unfortunately, these white blood cells aren't really functional, and he explained that my immune system is still heavily depressed and essentially non-existent. I guess I sort of knew that, but part of me was hoping that my new stem cells were just rocketing along and taking care of business, fixing damaged tissue and gearing up to fight bacteria in their new home.

My doctors were happy with my walking, and I learned that the steroids only cause muscle atrophy from your waist down. In fact, they recommended not doing any upper body strengthening since it can cause the Hickman catheter to move around unnecessarily inside your body, which could possibly cause a blood infection. I've noticed my arms are a little thinner, but we'll just have to wait to work on that until I get the Hickman line removed, which won't be for several months.

This is my 4th of 6 transfusions for these Mesenchymal stem cells, and even though the transfusion only takes about 30 minutes, there is a 2-hour follow-up to monitor your condition to make sure there are no adverse side effects. So by the time we were done, it was 4:30 pm, and we picked up Johanna and headed home. I treated Johanna to a takeout bowl of Pho noodles since she's been getting jealous of the various fun foods I've been taking home while she's been working hard, and it hit the spot.

I got really tired after dinner and took a solid nap for 2 hours, during which I received a phone call and had no idea what was going on. For some reason I get this post-Benadryl hangover several hours after it's administered, and sleep so heavily that I can't tell what day or time it is when I wake up. The good news is that the phone call was from the SCCA, and they are lowering the dose of my Tacrolimus, one of the drugs that prevents GVHD. This is good since the side effects from this drug include tremors and blurry vision, both of which I'm experiencing regularly now. It also suppresses magnesium in the body, which is why I'm required to infuse a small IV bag of magnesium each night. I'll be on this drug for a while, but if the dose becomes low enough I'll be able to replace the magnesium IV infusions with an oral pill.

Next Monday I'm going in for the milestone "Day 28" bone marrow biopsy (they actually scheduled it for Day 27), which will accurately determine how well the new stem cells are engrafting and whether there is any sign of the disease. I'm excited and anxious, but mostly excited that the days are flying by and that things are continuing to look good.

Here are some pictures from our walk. On the way back we meandered over into North Capitol hill on the west side of Broadway, which is near where I used to live and still one of my favorite areas of town.

Mom on top of the world

The Space Needle is right behind my head

Re-fueling

The hoody + floppy-hat look

Day +23 - Feeling great!

2009-02-19T23:18:00.000-08:00

Today I woke up feeling great. It's probably because I slept well, which hasn't happened in a while. A couple of the medications can cause trouble sleeping, and since I'm still getting up about 3 or 4 times a night to hit the restroom it's hard to get back to sleep each time. But even with getting up last night as well, I fell back into a deep sleep and lumbered along until 8 am. It felt great. It's also been 23 days since the transplant, and 23 happens to be a favorite number of mine, so go figure. Part of me is a little scared that things are going too well, but I've always had a cautious outlook.

The picture above was taken by my friend, Simon, on a walk we did around Seward Park yesterday. You can call me chrome-dome now :) I was pretty lathered up in sunblock, but luckily most of the walk was done out of direct sunlight, so I got to uncover a bit. On the way back he offered to let me drive his Porsche, and we'd had such a fun walk on a beautiful day that it was hard to say no, even though it's his baby :) It was a fun drive back along the twisty Lake Washington Boulevard.

Before the walk with Simon, I did my do-over blood draw at the SCCA since I had screwed up the test the day before by taking one of the medications at the wrong time. My team scheduler called to make sure I stopped by for a chest X-ray before going home, and I was home and back from the SCCA in 30 minutes. That's awesome. Having everything in one building and a highly coordinated staff sure makes a huge difference. Troy, the team scheduler, keeps me up to date on my schedule anytime it changes, and the rest of the staff keeps me informed regularly about what's going on. All of them even have email addresses, and they respond quickly! These guys are really spot-on.

My breakfast burrito yesterday morning reminded me that I still need to be careful with my delicate mouth. The whole mouth is slowly re-growing its lining, and a little piece of egg in my semi-hot burrito opened the tiniest blister on the roof of my mouth. It's gone now, but, argh!

So anyway, today I woke up feeling great. I drove Johanna to her chiropractor appointment, and met her chiropractor, who is also a fireman and is running up 69 flights of stairs on my behalf in the Firefighter Stairclimb at Columbia Tower, a worldwide competition among firefighters to raise money for the Lymphoma & Leukemia Society. My friend, Nic, the ultra-marathoner, runs this same climb every year, but these 1,500 fireman run up all those flights in full firefighting gear. Holy moly!

After the chiropractor, we stopped at Moka's for coffee and an egg breakfast sandwich (yum), then I headed back home to tidy up the place in preparation for our housecleaners. I finished a funny book called Couch that my brother-in-law gave me, and headed down to the Audi dealer to fix a windshield crack. The receptionist: "We've got pastries and donuts while you wait." Me: "Thanks." (I can't eat food that's in the open) "Do you have wifi?" Receptionist: "Yes!" Heaven :) They couldn't fix the dent since it was too low on the windshield, but I got a free car wash/vacuum out of it and a relaxing time playing on the MacBook enjoying the change of scenery. Then it was lunch with a friend, where I had pizza for the first time in a month, and it tasted pretty good. Not perfect tasting yet, but agreeable. I met with my boss to chat about stuff over my 2nd coffee of the day (yay coffee tastes ok!), and then picked up Johanna from work, hooked up my portable IV pump to get my daily infusion of magnesium, and we headed over to my parent's apartment where my mom had a wonderful shrimp creole ready and waiting. My sister and her husband were there, and we hung out in front of the fire afterwards chatting and digesting. After getting home, Johanna settled in to watch the weird Grey's Anatomy / Private Practice crossover thing and I finished and filed our taxes. Then it was time to take a shower and get ready for bed. Whew!

Tomorrow I have another day of SCCA appointments, including a blood draw, a visit to the snot guy, and another transfusion of those magic Mesenchymal stem cells. Johanna hates these transfusions because of the fishy smell that lingers on me all day as a result of the preservatives in the IV bag. I don't mind since I get a nice Benadryl nap out of it. I'll also be meeting with the attending physician to go over any new issues. Wish me luck!

Steve with a big smile after driving Simon's fast, shiny Porsche!

Day +22 - Pictures!

2009-02-18T01:04:00.000-08:00

My friend, George, reminded me that I should post more pictures on my updates, and I realized I didn't even have a picture of me at home yet! Duh! My mom took this picture of me tonight while I was in my favorite hang-out spot, playing around on the web and just generally goofing off.

So that walk that I was going to do today after eating my Pho noodles? Didn't happen. Instead, I helped babysit the wonderful beef stew that had been simmering for several hours, and then just before getting ready to go out, I decided to lay down on the couch and close my eyes, you know, just for a few minutes. The next thing I know, my mom is at the door, asking if I'd added the potatoes and carrots, that's she's tried to call me twice, and I'm looking at her like, "What is she talking about?" I was so thoroughly zonked out that I couldn't tell if it was morning or night, and my first reaction was that she had come over to take me to the SCCA for our next round of appointments. I think it was part of the Benadryl hangover from earlier in the day. So tomorrow, I walk. But I did do a lot of chores around the house after I woke up, picked Johanna up from her spa massage an hour later, and then we chowed down on the stew like there was no tomorrow. It was great.

My mom came by after dinner to learn how Johanna bleach-cleans the house every night, including countertops, sponges, bathrooms, doorknobs, and cutting boards. Now my mom can come by and share some of the burden, which she likes to do :) There is a lot of maintenance required to keep me germ-free since I have no learned immunity, just like a newborn baby, and I'm lucky to have the best caregivers around.

Wine makes everything more fun!

Scrubbing away in scrubs

By the way, next Tuesday is Day 28, which is the day all transplant recipients get a bone marrow biopsy to see how well the new stem cells are grafting. I remember thinking Day 28 was so far away when I was at Day 0, and how agonizing it would be to wait that long to see how well they were doing. Well, my white blood counts are now off the chart. White blood cells have the shortest lifespan, so they die off quickly but are reborn more quickly. So I think what's happening is that the new white blood cells are gearing up to start fighting off the remnants of my other blood types, like red blood cells which can hang around in the body for months. If they start getting *too* high it could indicate a problem, but none of the doctors were concerned with the numbers.

I wish my portfolio would start trending like this...

I figured I'd throw in an "evil eyes" shot for posterity. This one was taken a few days ago by yours truly. In the last couple of days, some of the red is finally dissipating and there are places where you can see the whites of my eyes again. So now I have this splotchy, mottled, reddish-white eye look. Oh well.

I might make a mask of this for next Halloween

Ciao for now.

Day +21 - SCCA visit, feeling great

2009-02-17T15:27:00.000-08:00

The magic Mesenchymal stem cells were late today, so we had to wait an extra 90 minutes before they could start transfusing. Last Friday the stem cells came on time for an 8:30 am transfusion, but apparently it takes a an hour or so to prepare, so the technicians were complaining last week that they had to go in to the lab really early. Today they just slept in I guess, since we didn't start the transfusion until 11 am. But my mom and I ended up getting a lot of business done in those 4 and a half hours I was hanging out in the transfusion room. Basically that's where I stayed all day, either sleeping from the Benadryl, playing on the laptop, playing on the iPhone, eating a boxed lunch, or sending my mom around the building to pick up supplies.

The doc stopped by the transfusion room for a clinic visit and expressed how happy he was with the way things were going. I was worried about some swelling in my legs, but he wasn't concerned since it was happening equally in both legs and that exercise will help (I *have* been slacking a little on the walking lately). Last night Johanna and I walked down to PCC Market and I hauled back the groceries in my backpack. Today I plan to do a nice long walk with another This American Life podcast.

Then the nutritionist came by and gave me another gold star on my eating habits. I'm hitting my target goals for calories, protein, calcium and Vitamin D, thanks to a nicely polished little iPhone app called Lose It! that lets you establish a calorie budget so that you can quickly see how much more you need to eat. Yeah, weird problem to have, huh :) She noticed an upward glucose trend but wasn't worried about it. I'll meet with her once next week, then once every other week after that. She said the swelling in my legs can also be caused by the IV fluid, since there is a lot of salt in each bag.

I sent my mom on some errands around the building to pick up a bunch of supplies, such as:

~~300~~ 30 saline syringes + ~~150~~ 30 heparin syringes (used to flush my Hickman lines each day)
2 bags of parafilm, a wax paper for covering the Hickman ends while showering
3 more tubing kits for my portable IV pump
2 bottles of Nystatin topical powder (for my, *ahem*, rash)
5 bags of IV fluid (magnesium)

Good news: I'm off the 1 liter bag of IV fluid! This bag takes 4 hours a day to infuse using my portable IV pump, which isn't so long, but it's still a long time to listen to a little whirring pump and feeling like you're jacked in the whole time. They've switched me to a small bag of magnesium now, which only takes an hour to infuse. Should be a cakewalk.

More good news: Last Friday the docs put me on a taper schedule for the Prednisone, a steroid that helps treat GVHD but which also makes you incredibly puffy and causes all sorts of other side effects and issues. I started on a pretty high dose of 90 mg twice a day, and the taper schedule will decrease the dose to 0 by March 20th. I've already gone through one of the taper cycles, and am hoping my face and body start returning to their normal shape pretty soon. It's very weird to see someone staring back at you in the mirror that doesn't look like you. I'm also excited about taking less pills. I started at 32 pills a day and the number should start decreasing as we reduce the various meds. Some I will be on for many many years.

Unfortunately I need to go back for another blood draw tomorrow since I screwed up one of the tests by taking my medications in the morning. One of the medications is called Tacrolimus, which helps prevent GVHD, and they regularly check the levels in your blood to see if they need to adjust the dose. But if you take the drug before the blood draw, it screws up the test. It's annoying that they didn't mention it for today's draw, so from now on I just won't take it before any blood draws to be safe, since they're usually scheduled early enough in the morning anyway.

My mom just put on a classic beef stew to roast for several hours, so I'm excited about that for dinner tonight. But right now I'm off to enjoy the sunshine (with lots of sunscreen) and to get some takeout Pho from Than Brothers.

Oh, and right now my favorite thing to do at home is to sit on the couch in front of the stereo with the MacBook, playing on the web and writing code, and blasting music wirelessly through the living room speakers through iTunes. It's nice when technology is fun and easy.

Day +17 - The amazing human body, more MSCs

2009-02-13T23:42:00.000-08:00

I'm continually amazed by the human body. When you're really in tune with it, like I have been for the last 8 months, it can be discouraging to see the effects of cancer and the mayhem it causes on your body, but as you learn more about what goes on inside of you it's mindblowing how many millions of *other* parts there are, all working in unison to keep you going with hardly any maintenance. It just *wants* to work. Since I've been home from the hospital, I've been able to experience my body heal itself, and it's amazing. My hands got sunburned a couple of months back, and it flared up pretty badly as GVHD after the transplant, causing my hands to crack, peel and swell with a decent amount of pain. But I've been using dry skin therapy lotion diligently and Johanna and I can see my hands return to normal almost by the hour. My mucositis is improving and I don't experience the thick saliva buildup every few hours that I had before. I'm still paying close attention to dental hygiene and still use the special mouth rinse a lot, but it's fascinating to watch the mouth heal itself. I can eat more foods now, and can begin to taste just a little more each meal. I also got a rash pretty badly, one of those that show up in the darndest places (my groin), and that has been steadily healing itself day by day. My energy is returning and I feel more alert and active each day. I don't think I noticed all this healing as much last time I came out of the induction chemo since I was feeling pretty miserable most of the time. But since I'm feeling alert, I'm much more aware of what's going on with my body.

I think 3 things made the biggest contribution to my recovery: mental preparation, hard work when times were tough (like forcing yourself to eat, walk, stay positive), and a lot of luck. The mental preparation was probably due to the fact that I was miserable a lot during the induction chemo and had a pretty recent memory of it, so it was a constant sticking point in my head that I didn't want to feel that way again. The other thing that is starting to make an impact on me is that I'm done with the transplant! For the last 8 months it's been a roller-coaster of emotions, as you'd try to keep a normal life but then would go into the clinic and your doc would worry about you, or you'd be preparing for another round of chemo, or you'd find that your counts were down suddenly and you needed a transfusion that day. Trying to stay positive when you feel broken is tough. Especially when you know there's nothing you can really you can do by yourself to fix it, and you know it's going to be a while before you might actually get fixed, and even that might be a crap-shot. So now that it's done I think a huge weight has been lifted, which makes it feel really worthwhile to focus on making myself better for a change, since it feels like it's more in my hands now. The whole thing still isn't a slam dunk yet, since there is still a 30% chance of relapsing in the next year, so keep your fingers crossed that things keep going as well as they have. They say 5 years with no relapse is really the measure of being fully cured, so there is still a lot of time to go.

Enough with the introspection, here's what's been going on.

Yesterday Simon and I walked around the Arboretum, and it felt great to be outside. Spring comes early to Seattle, and we could already smell the flowers and even saw some robins flitting about. Since it was a weekday, it was nice and quiet. After dropping him off for lunch, I stopped by the SCCA to pick up some supplies. I felt more like a visitor than a patient. It was a good feeling. The walk gave me a huge craving for Pho, so I picked some up from Than Brothers and stuffed myself until I couldn't eat anymore. That was the first big meal I'd eaten since before going into the hospital, and I was happy that my whole digestive tract from end to end was able to deal with it just fine. Each little milestone is a big deal :) The nutritionist wants me to get at least 150 mg of protein, 2,500 calories, and 4 liters of liquid per day. The medications I'm on are really hard on the body, and it's a big deal to keep the calories, proteins, and vitamins and minerals up. Luckily, the high-dose steroids I'm on give me a ravenous appetite even though not all things taste very good. But I've found a lot of things that work, so I've been drinking a lot of milk, eating big bowls of cereal, getting in a couple of Carnation Instant Breakfasts with ice cream, and eating lots of soups and spicy noodle bowls. I have a huge craving for spicy noodles right now. The Japanese discovered a new taste called Umami, which comes from the amino acids naturally found in meats, broths and stock. The word means "delicious flavor" or "savory" in japanese. Apparently the tongue actually has taste receptors for this in addition to sweet, salty, bitter, etc. My nutritionist explained that a lot of chemo patients discover that they can still taste Umami flavors even though they can't taste much else, which is exactly what I'm experiencing with my cravings. Tomorrow I'm excited to pick up a couple of my favorite spicy Udon bowls from Central Market.

Today I had a clinic appointment at the SCCA, which consisted of a quick blood draw, then another transfusion of those magic Mesenchymal stem cells. The transfusion only took about 20 minutes, but you have to stick around for 90 minutes afterwards while they continually monitor your blood pressure and vital signs. But with the Benadryl they load you up with before the transfusion, I had a nice nap. I'll be getting 4 more transfusions of these stem cells in the next few weeks. My next clinic appointment at the SCCA isn't until next Tuesday, and I'll be on a Tuesday/Friday schedule after that, which is pretty awesome. Some folks go in every other day, or every day. Each day I still have to plug myself in to my portable IV pump, which takes about 4 hours to infuse a liter worth of fluids and minerals, but I'm starting to get on a schedule and the time goes by pretty quickly. The backpack that holds the pump and IV fluid bag makes it really convenient, and I don't notice it much. I've even driven the car with my backpack to go pick up Johanna from the bus stop.

I didn't walk outside today, but I like to help Johanna with chores around the house which gives me some exercise since I end up going up and down the stairs a few dozen times a day. Since we have to wash towels, linens, and clothes each time I use them, there is a lot of laundry to do. And with all the paper towels I use when washing my hands a hundred times a day, and the medical supplies that get thrown away after my Hickman flushes and IV pump infusions (it's amazing how much *stuff* gets thrown away in the medical industry), there is a lot of trash collecting to do. But I like to have a clean house and it's nice and satisfying to have the time to do it.

Tonight our friends Jenny and Greg came over and made food for us, inspired by their recent trip to Thailand. They brought sticky rice with mangoes, an awesomely sweet dessert, and showed us pictures from their trip. My sister, Brian and my mom were here as well, so we hooked Jenny and Greg's laptop up on the network and had fun using the Xbox 360 to look at the elephants, temples, thai food, and manta rays on the big LCD TV. Such a better way to see pictures than crowding around a laptop monitor.

Oh, and while I'm babbling, I just wanted to point out that I love my MacBook laptop. It's one of the new 13" unibody versions with the backlit keyboard. I've had a lot of laptops, and have gotten used to their quirks and various issues and have been relatively happy, but I've never experienced the pure joy that I get when just opening the lid of the MacBook, having the bright display come on a second later, being able to use it right away, and the fact that it's whisper quiet. It really just works that great. I loved having it in the hospital, and I bring it everywhere with me now, even to the SCCA between doc appointments and during transfusions since it's so quick to open and close. Anyway, if you're thinking about a new laptop and want to try a Mac, I highly recommend the new MacBook. There's a fun video to watch here if you're interested in the unibody design, machined out of a solid block of aluminum.

Tomorrow is Valentine's day, and my friend, Jason, said I should tell Johanna that my red eyes are a Valentine's day present, since "red is the color of love, right?". Perfect :)

Day +15 - SCCA appointments, MRI, walked 5 miles

2009-02-11T23:35:00.000-08:00

It's late, but here's a post to re-cap the day. Today was my first day back at the SCCA for regular clinic visits now that I'm out of the hospital.

The day started early at 7 am with a scheduled blood draw. Then I had an MRI of my pelvis which is part of the clinical trial for the Mesenchymal stem cells I'm receiving, those special stem cells that actually can regenerate tissue (with my strange red eyes and automatic-tissue regrowing cells, I feel like one of the X-Men). The purpose of the MRI is to establish a base line to make sure there is no abnormal tissue growth. In all of the 850 trials for these cells, there was one instance of a guy who grew bone tissue out of his lungs! It was a weird case, and he already had bone problems, but because of that one instance they now schedule MRIs now just to be safe. The MRI wasn't a big deal, but it was *really* loud. They provide you with headphones, but it didn't help much. It was like having a fire engine right next to your head going ENNNNNHH ENNNNNHH ENNNNNHH or BUH BUH BUH BUH BUH BUH BUH BUH, over and over for half an hour. They had piped in Jack Johnson over the headphones, and I'm not sure I'll ever be able to listen to Jack Johnson the same way again.

After the MRI I met with the clinician, who couldn't believe I was doing so well the day after I got out of the hospital and gave me a gold star, then it was off to see the snot guy to provide some snot, then it was over to the nutritionist who also couldn't believe I was doing so well and gave me another gold star. Because things are looking good, I'm only scheduled for SCCA visits twice a week, which is great. All this really boosted my self-confidence, so after I got home I celebrated by walking about 5 miles around the neighborhood and over to Cloud City, one of my favorite coffee shops. The walk felt great, though I had to lather up with lots of sunblock to prevent GVHD issues. I even ordered a short latte and a broccoli quiche, and the coffee actually tasted pretty good. I've been drinking a lot of milk lately, which helps with the calcium and vitamin D that are being sucked from my body by the steroids, so I figured a short latte was basically just more milk (normally I get a double short), and I was curious to see how my stomach would handle the coffee. It was a nice treat. I wore my sunglasses inside when ordering so as not to freak out the baristas, but it was nice to be around normal people for a change, normal people who aren't sick I mean. I still need to avoid crowds, but there are a lot of places I can go. My scheduler, Troy, at the SCCA said he sees people with my bloody eyes all the time, and calls them Gambit Eyes, after the character from the X-Men, so we joked about that for a bit and I didn't feel so bad. My face is puffy and my tongue is totally white now, with the new taste buds growing in, so when I stick out my tongue and open my eyes wide I look pretty freaky.

After my walk I did a bunch of chores around the house to help out Johanna, and it felt good to get back in the swing of things. We hooked up my portable IV pump which provides me with more hydration and some missing minerals like magnesium and potassium that are getting sucked away by the medications, and then watched Lost with my sister and Brian. It was nice to watch TV in HD again on a big screen after watching it on the little TVs in the hospital. The IV pump has a little backpack that goes with it, and I can hear it whirring away by the bed as I write this. If I can hit my goal of drinking 4 liters of water a day, they may taper me off the IV hydration early. That would be awesome.

Tomorrow I'll be walking with Simon around the Arboretum, so that should be fun. I'm looking forward to getting my muscles back in shape, since the medications I'm on are actually promoting bone and muscle loss, so lots of exercise and calcium will be good.

I probably won't be posting as often, since things are starting to settle down a bit, but I'll keep updating as interesting things come up. Ciao!

Day +14 - At home!

2009-02-10T22:41:00.000-08:00

Here's a picture of me all packed up with my backpack, just before leaving the hospital. Even though the weather was crappy, it was still nice to be outside. My only issue with being in the outside world is that my eyes look so evil! I can see people looking at me funny, and every time I catch a glimpse of myself in a mirror it looks so spooky. They're starting to fade a little, so now they really look blood-red. It's very weird.

Once we got the orders to be discharged, we had to wait around a while to meet with the discharge nurse who let us know what to expect for tomorrow, since I have a full day of appointments at the SCCA, we had to get all our supplies and equipment to take home with us, like sterile pads, gloves and the portable IV pump, and then we had to wait for the pharmacy to fill all the prescriptions. This all took several hours, so by the time we left the hospital it was about 5:30 pm. It was kind of weird to leave, since I had lived in that little room for 22 days. Some of the nurses stopped by to say good-bye and to hope that they don't see me again :), and Erika asked for my blog, which was cool. But it feels so nice to be at home again.

Here's a picture of my prescriptions that I've been taking at the hospital and that I'll need to continue at home. This is only about a 2-week supply, if you can believe that.

This is why it took the pharmacy so long to fill my prescriptions

Here's why we're a bit excited about the engraftment. In the last graphs I posted from a few days ago, you could just start to see an upward trend of white blood cells, neutrophils, and platelets. Well, take a look at the graphs below! The green area is the normal range, and the purple bar is when I underwent the conditioning chemo just before the transplant. We still expect these to bounce around a bit, and in fact, my hematocrit has dropped from 33 to 31, but things are still looking great. The doctors continue to be impressed at how fast the engraftment happened.

So far I'm adjusting well at home, and Johanna and my mom were here this evening keeping things clean and cooking soup for the next few days for me to eat. I'm still rinsing my mouth with the special mouth rinse every few hours, and will be looking for a mile-long route around the neighborhood to keep up my energy.

Happy to be home!

Day +13 - Feeling great, Mesenchymal stem cells

2009-02-10T01:36:00.001-08:00

It's late, but I slept about 10 hours today and I find that it's best just to wake up and read or do something instead of tossing and turning trying to sleep. On the left is a picture of me, Annie, Johanna and Joe. You can see how puffy my face is from the steroids I'm taking. The puffiness along with my black eyes makes me look pretty weird, I think, though it doesn't look so bad in this picture.

The docs made their rounds this morning and were thrilled to see the skin GVH mostly gone and the lack of fevers for the last few days. I'm still swallowing food, my mouth is hanging in there, and their faces lit up when they realized I had walked a total of 42 miles in the 3 weeks since I've been here. Since I can still swallow and eat food, they started writing up orders to taper me off the IV medications so that they can be replaced in pill form. In fact, as I'm writing this, I haven't been hooked up to my IV pole since 8pm! This is so awesome, and means I will probably be going home in the next day or so. WOOOOHOOOO!!!!!

Counts are also continuing to go up: platelets are at 214 and ANC is at 5.24! These are squarely in the normal range. We still expect the counts to go up and down a bit in the next few weeks, and the immunosuppressive drugs I'm on doesn't mean my immune system is ready to go out and battle the world, and also because they are infant cells and have no learned immunity, but they sure are off to a good start.

Today I got my first infusion of MSCs, or Mesenchymal stem cells. What, you're asking? Didn't you already get stem cells? Well let me explain. The stem cell transplant I got 2 weeks ago consisted of HSCs, or hematopoietic stem cells. These HSCs can reproduce themselves and are the basic building blocks for all blood components, but blood components only. There are other types of stem cells which are building blocks for other things, such as tissue and muscle. MSCs are stem cells that help regenerate tissue and have been shown to be a big factor in reducing graft vs. host disease. Unlike HSCs, MSCs are universally compatible and don't have to be closely typed. It's a Phase III clinical trial for which I'm eligible, and if it means not having to suffer through several years of GVHD, I think it will be a wonderful thing. I'll be one of 850 people so far in the trial. Essentially the way it works is this: MSCs live in the bone marrow awaiting instruction from the immune system. They interact with the immune cells in your body and react to inflammatory signals in various parts of the body, then leave the bone marrow to travel to the damaged areas and actually help regenerate lost tissue and muscle. How cool is that?

It's a double-blind test, meaning 50% of patients will get the MSCs, and the rest a placebo. Not even the nurses and doctors administering the transfusion are supposed to know. The transfusion bag and even the tubes are covered in dark plastic. But apparently there is a very distinct fishy-smell that goes along with the MSCs that sort of gives it away, and my room smelled fishy all day. So much for double-blind tests! I'll be receiving 6 of these MSC transfusions. What's funny is that I was already zonkered out this morning after walking a mile and sleeping very well when the nurses and trial coordinators came in to administer the MSCs. They started by loading me up with 50mg of Benadryl, which immediately put me back to sleep again. The trial researchers were these 2 guys who were required to supervise the the whole operation, which took about 2 hours, and they stood at the foot of my bed the whole time. So I would wake up groggily and see these 2 dudes standing there, all serious and bored looking, like secret service agents, which I'm sure affected my dreams. At one point there was a cleaning lady in my room, and I remember asking her some random technical question about my IV medications. She just shrugged and kept mopping. I didn't end up waking up until about 3:30 pm, when my parents showed up to walk another mile with me. Then Johanna showed up, we hung out for a bit, and I slept again from 7 pm until 1 am. It was great.

Right now I'm feeling pretty good, with some fatigue, but hoping my recovery is speedy and that the GVHD is suppressed and not debilitating. I've been reading lots of blogs about people at day 80 and beyond who are still suffering from serious cases of GVHD with things like diarrhea every 10 minutes, bad gut infections, and skin rashes that get increasingly worse and don't respond to steroids. Cross your fingers that my GVHD is kept to a minimum with the steroids, and that these magic Mesenchymal stem cells help regenerate any damaged tissue and muscle that's likely to occur.

Over and out!

Day +12 - Counts increasing, skin rash disappearing

2009-02-08T21:57:00.000-08:00

Not much to report. Today was relatively uneventful, which is excellent news. Slept great, no fever, no tossing and turning, woke up with only a minor headache which was quickly resolved with some Imitrex.

The doctors came in to report that all my counts are still increasing, which I am still in shock over. Yesterday my Neutrophils were at 0.8, which was a big deal since they cleared the important 0.5 threshold. Today they're at 2.72! Part of this is due to the steroids, which tends to push new cells from the marrow quicker. We also expect them to bounce around down a little bit, but still! Platelets are also up from 45 to 119! These are some really strong cells, baby. Again, we also expect them to bounce around a bit and they could go quite a bit back down, but so far things are looking very good! I'll put together some more graphs later. One of the reasons they explained that it took so long for my counts to return after my induction chemo, is that we had to beat them down until they were nearly dead, in order to wipe out as many leukemia cells in the process. So those bruised and badly beaten cells took some time to recover. On the other hand, with a stem cell transplant, the chemo dose to the old cells was essentially lethal, leaving no man alive. So instead of waiting for badly beaten cells to recover, the new stem cells were healthy and raring to go, requiring the methotrexate chemo to actually tell them to hold their horses a bit. Now that the methotrexate is done, it will be interesting to watch them go full bore, expecting some up and down bumps along the way mind you.

The skin rash is disappearing thanks to the steroids, and the doctors are keeping a close eye on it. No fevers to report in the last few days, and I'm still eating solid food, though now it's down to Carnation Instant breakfast milkshakes and chicken noodle soups and milk. My mouth is still holding together, but the skin is very thin and flimsy and after I eat there is a lingering pain for about 20 minutes. But, if it can hold out until the engraftment really kicks in, all I have to do is keep what I have left and the the new skin cells will start growing and then I'll be all set. I'm also finding it more difficult to talk, which is annoying.

Yesterday I had a new attending physician named Dr. Deeg, who is highly recognized and is a specialist in MDS, the exact disease I have. The attending physicians rotate out every month, presumably so that they can continue focusing on their scientific research and not spend the whole year doing in-patient rounds. I've had 4 attending physicians so far, Dr. Storb, Dr. Turtle, Dr. Doney, and Dr. Deeg. All of them have high credentials and have been incredibly smart. In fact, Dr. Storb was one of the founding members of the Fred Hutchinson Research Center and worked with Dr. Thomas, the man who developed the bone marrow transplant way back in the 60s and 70s and who won a Nobel Prize for it. Dr. Storb is also really funny and cool, and though he's in his 70s (he doesn't look it), he still kayaks from his houseboat every morning across Lake Union to work. I remember hearing Dr. Deeg's name from as early as June, when my general oncologist would call him up to consult on treatment plans for me, since Deeg is an MDS specialist and is at the top of his field here. So it's amazing having people like Dr. Deeg handling my case, doing rounds and coming into my room every morning to look me over and talk about how things are going. It's awesome to have that kind of care available to you and someone like that inspecting your body and treatment schedule every day.

The docs are starting to taper down the IV drugs so that I can start taking them in pill form, presumably so that can get me discharged. Woohoo! Barring no complications and that the skin rash disappears, it could be soon now. Unfortunately, the evil eye look will be around for another few weeks. The docs don't really care too much about it since it will go away on its own and isn't problematic, so I'll probably have to wear shades for a while or risk scaring off little kids and coffee baristas. Actually little kids will probably think it's cool.

The usual visitors came by today (johanna, mom, dad, cindy, brian), and I got my 2 miles of walking in, so all is well. I think I'm going to get some sleep early for a change tonight.

ciao.

Day +11 - Engraftment!

2009-02-07T23:14:00.000-08:00

Good news! It looks like the new baby stem cells are growing, which means we have engraftment!! Technically engraftment would have been on Day 10, but I'm still a little cautiously optimistic since I'm worried that it might be my *old* stem cells coming back from near-death and re-growing. But with doctors now thinking that the skin rash is graft vs. host and not caused by the antibiotics, and the fact that different doctors have repeatedly said that I got a pretty large bag of stem cells, they're not surprised that engraftment is happening a few days ahead of schedule. Normally it takes 2-3 weeks to engraft, and apparently mine started on Day 10. Woohoo!!! Since today is Day 11, I was still scheduled for one more day of Methotrexate chemotherapy, used to slow down the new stem cells, so the numbers might decrease slightly tomorrow. But the doctors are happy and things seem like they're off to a good start.

Check out some of the graphs I put together for the recent weeks. The first graph shows my total white blood cell counts. The green bar is the normal range, and the purple bar is when I underwent what they call "conditioning", which is the chemotherapy to prepare your body for transplant. It should really be called "total annihilation" since that's basically what happens. You can see the little white blood cells spike in numbers as they react to this toxic, foreign substance, but they quickly lose the battle. The thing that's notable is the little uplift on the bottom right, as the the new stem cells start producing new white blood cells.

Again, with the neutrophils, one of the white blood components that fight bacteria, you can see the neutrophils multiplying in numbers in anticipation of a fight, then losing all of their soldiers and dropping to 0. Literally. Neutrophils only live in the body for 6 hours, so my chart had said 0.00 for over a week. Zilch. Again, notice the little uplift on the bottom right. A neutrophil level above 0.5 is significantly safer health-wise than a level of 0, so to already be at 0.8 is huge. Granted, this will go down again after today's methotrexate chemotherapy, but it's a good sign that these new stem cells are strong!

My hemotocrit level got a boost as well yesterday. The boost before that at 24 was due to a red blood transfusion. Hematocrit is a direct correlation with how fatigued I get, since the fewer the red blood cells, the fewer the amount of oxygen that can be transported throughout my body. For example, when my hematocrit hit 20 a few months ago, I couldn't stand for more than a few minutes and fainted for the first time in my life. Red blood cells and platelets have a longer lifetime than white blood cells, which is why you don't see them die off as quickly as the white blood cells above. For red blood cells and platelets there will be a period of time when the old and new cells mingle until, eventually, the old ones die off or are attacked and eaten by the new immune system. Poor old stever blood. You did me good up to this point. It's sad to see you go.

I've had two platelet transfusions so far, as you can see in the little upticks on the right (the first uptick happened by itself), but the uptick at the end is the one that's interesting in that it also appears to be from the new stem cells.

So all blood components so far are seeing some activity. This is great news! I'm still slightly worried that these are my old stem cells coming back from being near-dead and finally coming round. But after asking that question to a bunch of doctors and nurses, they're more and more convinced this is engraftment. Besides, they tell me, "the chemo you got was lethal for a reason. If you didn't get those stem cells, you'd be getting daily transfusions just to keep you going. Your old cells didn't have a chance." I knew that all along going into this, but part of me always wants to be cautious before getting too excited.

It's also been my first full night and day with no fevers, thank god, so that's real good news. Though this could be partly due to the steroid called Prednisone that I'm now taking, which masks fevers, and will be taking for a while to help with graft vs host. The skin rash seems to be dissipating, and in general I'm feeling pretty good. Last night I was really worried since I had a lot of trouble swallowing water since my throat was swollen and filled with mucus, and there were also areas in my throat that were bleeding. As I tried to sleep I was about to write off eating food altogether, I felt so miserable, and was tempted to switch to the IV nutrition after all, as much as I didn't want to. But this morning I tried again with ice water and magically it was almost like drinking normally again. There are still a few bumps down there, but it was nothing like yesterday. So I was actually able to drink 2 of those 470 calorie milkshakes, eat a bowl of campbell's soup, and drink some gatorade and lots of water. Whew! It's possible that my counts coming up are causing the improvements, and that would be just in time, let me tell you.

My evil eyes are still dark, dark red, and the docs say it won't go away for another couple of weeks. It's totally painless, and doesn't affect my vision, but still gives me a start when I see myself in the mirror. What's eerie is that when I see them, it just looks like they're all black, since the flash of the camera is what makes it look red. So I can't even really see where my eyes are looking at. It's just a strange sight to see. I've taken some pictures, and maybe I'll make some Halloween masks for next year :)

Our friends Joe and Annie stopped by and helped me walk my 2nd mile, and they picked up food for Johanna who'd been with me most of the day, and we all had a good time chatting about random stuff.

That's about it for now. The next thing to watch for now that the engraftment has started is more graft vs host issues, like skin rashes, gut diseases, liver and organ issues, etc. It's a delicate balancing game to make sure the new stem cells have enough leeway to take over, but not to give them enough control that they might start attacking the host body, me. Since my donor is a 9/10 match, we very much expect to see more GVH issues. Roughly 50% of patients will get GVHD (my statistics are higher), and they'll usually be fully resolved in a 5 year timeframe. The other thing to remember is that my immune system does not have any learned immunity from the donor, but rather the immunity of a freshly born baby. And so, for the next year, I'll have to be very careful not to get things like the chicken pox, the measles, etc. At one year after my transplant I'll even go in for vaccinations just like a baby gets. I think of it as like installing a fresh copy of Windows XP, and than scrambling to get all the security patches and fixes installed before getting hit with a virus.

So keep your fingers crossed that these are real donor cells and that they keep going going going! We won't absolutely know for sure until Day 28, so it will be a kind of tense waiting game!

Day 10 - Evil eye day

2009-02-06T21:55:00.001-08:00

guest post by Johanna.
I'm gonna call this day 2 of Steve feeling miserable. You all know he holds up pretty well but I know he's suffering when he uses the word "miserable". His throat hurts and the mucositis was bothering him so much last night that he coughed until he threw up. Then he was so sad that the food he worked so painfully hard to eat was lost. This also caused the small hemorrhage in his eyes to worsen so you can't see any more white (Steve's evil eyes). Though this can look scary it's harmless, doesn't affect his vision and should go away in a couple weeks.

The following pictures are linked for your viewing comfort- not for the faint of heart!
EVIL EYE LINK 1
EVIL EYE LINK 2

Steve's doctors rounded this morning and continued the discussion of his rash, which they are now starting to believe may really be graft vs host (GVHD). After some discussion they started him on a steroid for the rash and came to take a skin biopsy to see if they can identify it as GHVD.

Steve just relayed the skin biopsy story to me and it goes like this:
"They came in and I was lying in bed sleeping and they tried to find the most concentrated area of rash. They cleaned off my whole arm and drew a circle the size of a pencil eraser and numbed it with lidocaine. Then the took out this tool, and said I'd feel some pressure, which I did, and they kept pushing and took out this core sample of the skin on my arm. And I looked over and there was a little hole in my arm filled with blood." Now I'm laughing at this story, which is sick, but he insisted I tell the full version and that cracks me up. Steve wants me to add that he'll probably have more skin biopsies in the future.

To take care of his mouth pain they gave him a fentanyl pump that he can press to help with his mouth/throat pain. At first Steve wasn't sure if it was helping but then he realized he could swallow without pain. Also the steroids give Steve the munchies which helps him want to eat- so being able to swallow a milkshake (or 3!) is really nice. Steve asks "Is it wrong to be on narcotics?" I think this is something we can let everyone comment on.
Later on they told Steve about a phase 3 clinical trial for Prochymal that Steve could participate in and sent a nurse by to talk with us about it.
After adjusting to his pain pump and having the steroids kick in, Steve's mood improved considerably. Cindy, Brian and Bev visited and we watched Baby Mama on the tv in his room.

two extra carriage returns just for Steve's viewing pleasure!

Day +9 - Full-body skin rash, more mucositis

2009-02-05T22:07:00.000-08:00

Not much to report today. The docs still think the skin rash is the result of the Imipenem antiobiotic, and we're just waiting to see if it goes down now that we've swtiched to a different one. Oh, and now I'm developing some kind of nasty pink eye at the top of my eyes.

Felt like crap most of the day, as I suffered through a couple more fevers and my mouth is increasingly feeling more painful. Swallowing water takes some work. Hopefully I can stick it out for just a few more days when the new stem cells start growing, which should improve the situation.

Johanna, my mom, and Val hung out with me for most of the day. My mom took Val to the airport in the afternoon to catch a flight back to Los Angeles. Johanna stayed with me through the rest of the day and helped me get breakfast, lunch and dinner down. We also walked another 2 miles around the floor.

It's sort of gross to observers, but the little suction wand to clear out all the extra mucous from your mouth really helps. If you can believe it, the jar is almost half full. Disgusting! The purpose of the saline rinse is to help thin it out and make it less acidic, but at this stage of the game I'm producing mucous with a vengeance.

Johanna and I watched a few more episodes of Monk, and we finally caught up on Lost again. I had fallen asleep during one of the recent episodes.

Brian's mom recently sent him my astrology horoscope for the last week, which is totally fascinating and inspiring given my current circumstances:

From the 26th through February 4th, Jupiter Trines Steve’s Pluto, giving him positive energy for regeneration.

"You have a strong desire to reform and remake your life at the cellular level at this time, and you should be striving to improve conditions surrounding you, to renew and to serve as a vehicle for regeneration in your world. Use your personal power to clear up and clean out. Expect to be offered a chance to lead or influence others, so use that influence to help everyone and everything concerned to join together and grow with you.

On the mundane level, this influence coincides with success and tremendous gains in personal resources. On a more humble level, it can give you the chance to straighten out any type of situation in your life that has been source of trouble for you. Widespread success will permeate your life fully."

Day +8 - Blood and platelets, skin rash intensifying

2009-02-04T23:41:00.000-08:00

Feeling off and on all day today. I got 2 fresh bags of red blood cells this morning since my hematocrit finally dropped below their threshold, from 27 to 24. This might explain why I was so fatigued yesterday, but even after the red blood cell transfusion I still feel pretty week.

The main issue right now is that I'm developing a skin rash over my whole body. It doesn't itch yet, but the docs don't like the look of it since it's getting worse, and also because it's not graft vs. host disease, which means it's coming from somewhere else. They suspect one of the new king-kong antibiotics I'm on (Imipenem) and switched me over to Aztreonam which should supposedly protect against the same things that the Imipenem did, but without the rashes. Rashes from GVHD are expected, but not until my new cells start engrafting, around Day 14 - 21.

Johanna, my mom, and Johanna's sister, Val, all stopped by today to help get me going and give me words of encouragement. I didn't get my full 2 miles in today, but walked 1.5 miles which felt pretty good.

The other new change is that they detected c.diff in my stool, which can happen when people have no immune system. C.diff is a bacteria that lives in your gut, and a normally healthy person won't ever suffer from it. If the immune system is compromised, the c.diff bacteria can take over and actually cause the disease called c.diff, which includes diarrhea and stomach cramps. So because mine is on the attack, I'm under what's called "Contact Isolation", which means the nurses and anyone who enters my room has to wear a gown and gloves. This isn't to protect me from them, it's to protect them from me spreading c.diff to other patients! So now I have to wear a gown and gloves during my walks. It's sort of funny that I'm the one that can infect people for a change, and not the other way around.

Had several high fevers again today, around the 102.4 range. Hopefully the new antibiotics will kick in to help this out. This, and my worsening mouth, are perhaps the most uncomfortable parts of the day.

Breakfast (cereal and milk), lunch (high-calorie protein shake) and dinner (Ivar's clam chowder) all stayed down today, so I'm happy about that. One of the nurses hooked up a little suction wand, sort of like the one dentist's use, to help suck out the increasingly annoying amount of mucus and saliva that keep building up in my mouth. This is much better than using a spit cup, as I'm finding I need to use the wand about once every 15 minutes. Annoying. But satisfying afterwards.

After dinner, the nurses brought in another bag of platelets since my counts had fallen below the threshold again (the threshold is now 20), so I was really zonkered after taking my normal Ativan and then getting 25mg of Benadryl. The Benadryl nap was great, and I woke up a few minutes ago to write just a little bit before attempting some sleep. Wish me luck!

Here's a picture of Erika and Tyler (two of my nurses), my mom, and Val all gowned up.

Day +7 - CT head scan was good, more high fevers

2009-02-03T21:59:00.000-08:00

First off, yesterday's CT scan of my noggin came back squeaky clean. Hooray! I was a little more worried about this than I realized. Part of it has to do with the fact that we've never scanned my brain, and I always had this nag that we should, just in case there was a tumor. A fellow blogger with leukemia had been diagnosed for a year, and it wasn't until doctors at the Hutch heard from her that she'd had some vision issues long back, that they ordered a brain scan, and lo and behold, found a tumor. So each time I get a bad migraine I always worry that maybe there's something going on up there. So getting these results relieves a nag I've had for a while. They also saw that my sinuses were totally clear and free of infection.

Johanna stopped by to get my day started, and though I was hungry, it took quite a bit of effort to eat a bowl of Raisin Bran and peaches. What's happening is that my mouth is desperately clinging on to the remaining cells lining it, but that lining is getting thinner by the day. I can see blood vessels and nerves threading around it now, so it's really thin. And painful in places. But the diligent mouth rinsing and keeping it clean has paid off, and other than a little bit of pain, I still don't have any ulcers or infections and I'm able to get food down. Right now my winning combination of food that meets the criteria of still tasting good with my dying taste buds, having enough calories and protein, and soft enough that it doesn't cause too much pain are Ivar's clam chowder, raspberry jello, hard-boiled eggs, milk, high-fiber chocolate shakes, and sufficiently soggy Raisin Bran. Not a huge selection, but enough to keep me going. My nutritionist wants me to get at least 1,200 calories and 50 grams of protein a day. If I'm diligent about taking the anti-nausea meds before I eat and make sure to order food even when I feel like crap, I can usually meet the goals. In fact, I've been gaining a couple of pounds in the last few days.

Val flew in from Los Angeles today and cabbed over to the hospital to hang out with me for a bit. We walked another mile around the floor before being joined by Rachael and Nic, who we chatted with a bit until I was briskly whisked away by the radiologist for a CT scan of my lungs. Nic gave me a "medal" from the last marathon he ran. These are usually cute, home-made little items, and Nic had created a medal out of a beer coaster and nylon rope, since he actually organized this last race. Totally cool! By the way, I've mentioned it before, but Nic is undertaking a herculean effort of running 13 marathons in 12 weeks, and he only has 1 marathon to go! He's raising money for the Leukemia and Lymphoma Society, a great resource that has helped us. If you haven't donated yet, there isn't much time left. See if you can help him reach his goal at 13in12.blogspot.com

The snot guy came again today and collected more snot. For the little device that measures how powerful your lungs are, I beat my record over last week by expelling 4.5 liters of air in 1 second and 5.2 liters total over the remaining 5 seconds. I'm shooting for 6 liters, since they've never had anyone on the floor get that high. My lung capacity is around 7 liters based on the tests we did at the SCCA, so it should be possible :)

Last night was pretty rough. No headaches this time, but I spiked a fever of 102.8 during the night. Having a high fever at night is a tough thing to get through. As you try to sleep, it starts with waves of shivers and then soon turns into uncontrollable shaking chills. I turned up the temperature in the room and then huddled under the blankets, waiting to warm up to whatever new temperature my brain had set its internal thermostat at. After an hour of this and feeling totally uncomfortable, restless and helpless, the shivering slowed down and I finally felt warm again. But my heart rate was running at 95 bpm, way higher than my resting heart rate of 60. It's impossible to sleep in this state, since the high temperature and fast heart rate make you incredibly anxious and can cause you to be delusional. It didn't help that I had just finished reading Into Thin Air that night, so I had dreams of cold weather tents, high-altitude sickness, and and an urge to help my fellow climbers. Other weird dreams I've had during fevers are feeling like my body is scattered all over the place, running as separate systems, and it takes a second when I wake up and look down and realize there's just one body, me, in the bed.

So I rang the nurse and said, "I think I'm running a fever", and 102.8 it was. She gave me Tylenol, which helps drop your temperature back to normal over a couple of hours. It's funny, but whenever I'm recovering from a high fever and am back to normal temperature, I feel on top of the world! Seriously, I feel 100% perfect. The cool air feels good, I have energy, and my head is clear. It's like hitting a reset button. I had my 3rd high fever of the day today just a few hours ago, and after notifying the nurse and getting Tylenol, again I feel great right now. Maybe it's the intense workout of your whole body shivering and having a high heart rate. The docs say the new antibiotics will take a few days to kick in, so hopefully we'll be done with these fevers soon. They really aren't very fun to deal with.

Other than that things are going pretty well. My calf is no longer sore, and my blood counts are exactly where they should be. I'm still walking 2 miles a day, able to eat solid food, and my mucositis is a grade 1 out of 4. The only issue besides the fevers is a small skin rash on my hand that the docs are monitoring. It itches occasionally, but it's not bothering me much. It looks pretty terrible though. See what you think.

Day +6 - More fevers, brain scan, losing hair!

2009-02-02T19:46:00.001-08:00

That's me on the left feeling pretty well, in front of my increasingly large number of pictures and comfort stuff. Unfortunately, I didn't feel that way much of the day today. With my counts dropping, I've been getting more and more tired and have been sitting down or sleeping most of the day. This morning's mile-long walk felt like climbing a mountain. But we're on Day 6 and things are still going relatively well.

This morning when I rinsed my mouth, I saw a fingernail-sized piece of skin in the sink. Uh oh. The oral medicine woman said it probably came from somewhere in my throat, since she couldn't see anywhere it would have come off inside my mouth. She gave my mouth an A+ for being at Day 6 with a mouth this good. Woohoo! My tongue and cheeks are turning a whitish color, and she explained that this is because the cells in the mouth completely replace themselves every few weeks. With the chemo, all those fast-growing cells are essentially disabled, and my mouth is clinging to what little skin and cells it has left. The taste buds are slowly dying, so I'm losing taste, but I'm still able to eat food with some effort.

I spiked a couple more fevers over 101 today, so the docs ordered in the big guns of antibiotics, Imipenem and Vancomycin. I've been on an antibiotic called Ceftazidime, which is what they start all transplant patients on. The transplant protocol from Fred Hutch dictates that patients be switched over to these 2 more powerful antibiotics once they start getting fevers. Since my neutrophils are now at 0.00, this is par for the course.

Last night I had more headaches, and I figured out the right dose of Imitrex that will get rid of the headache but not cause those annoying bone pains in my feet. Trying to balance all this stuff out can be a pain, especially at 4am when you're suffering from an excruciating headache. The docs are still convinced that the headaches are caused by the Tacrolimus immuno-suppressive drug that I've been on since I got here, 24 hours a day via IV drip. But just for good measure, they sent me down for a CT scan of my noggin. I haven't heard the results yet, so hopefully it's all clear. I should know by morning.

Oh! So today while I was sitting in my fancy new recliner, a gift from one of the nurses who brought it over from a recently vacated room, I noticed a funny sensation in my beard each time I bumped it. Well, I grabbed a few beard hairs between my fingers and they came right out! I expected this to happen sometime next week. My head hairs seem to be coming out too, but Johanna and I shaved my head a few days ago so it's hard to tell. So I quickly shaved off my beard, and now I shouldn't have to worry about shaving it for the next few weeks. Oh joy for those little bright spots in my life :)

Unfortunately, my intestinal tract is starting to fall apart, as expected, and this is making it hard to keep food down. I wasn't very successful with lunch today, and was only able to get halfway through dinner. The problem is that the chemo affects all the cells from your mouth to your butt, and the result is more nausea and other unfriendliness like stomach cramps. I was hoping to be able to eat solid food the entire time, but at the rate things are going it's starting to go downhill quickly. My oral mucositis is still in good shape, but if my intestines and stomach don't want to play nice with food, there's not much you can do. I'm hoping to be hungry for breakfast tomorrow morning, so we'll see how it goes.

That's it for now!

Day +5 - Platelets, fever

2009-02-01T20:25:00.000-08:00

Guest post by Johanna: Steve awoke this morning to find a bag of platelets waiting for him. His counts went down to 11 early in the morning and their threshold for transfusion is 10. To prepare for the platelets, Steve was given a bunch of benadryl which put him back to sleep until the early afternoon, and then he felt awesome! He got a late start on breakfast but still walked a mile with me and then I gave him a haircut. This afternoon Cindy and Brian visited and they played with iPhoto and the new "Faces" feature and they walked his second mile with him.

Now Steve has his second fever (101-over the watch and wait limit) so they are giving him tylenol and taking cultures. I'm glad he doesn't have the chills right now. He has a mild headache but I think he'll beat it easily since he's already had his Ativan and is all cozy in bed early.

Tomorrow will be Steve's official 2 weeks in the hospital. I'm celebrating this by preparing (slowly) for him to come home by starting a thorough cleaning of the house. It feels kind of strategic since I have to consider what things can be done last minute and what takes scheduling. Once all the major cleaning is done I will still have the day to day sanitizing to adjust to and the careful food prep, so it's nice to do some things in advance.

I can hardly believe it's February. The garden show is coming up and there is some sign of life in our yard- one yellow crocus came up so far.

Day +4 - Chest x-ray, new migraine medicine

2009-01-31T22:56:00.000-08:00

Not much to report. Walked 2 miles again today. That means I've walked 26 miles total since I've been in the hospital. A marathon! Today I definitely noticed more fatigue after finishing each walk, and in general during the day. My hematocrit is at 28, and they'll do a red-blood transfusion once it drops to 26, probably early next week. Neutrophils are at 0.01, and platelets have dropped to 26. Feels like old times, looking at these low numbers, since those are the numbers I have been living with for most of last year.

The new Immitrex migraine medicine works great. I took some last night after ending up with another excruciating migraine, and it killed the headache cold in about an hour. It wasn't funny then, but the worst of my headache was happening right when the visual effects of the voriconazole were kicking in, which for me consists of light sensitivity and pulsating lights that blink behind my eyelids. So here I am trying to get the room as dark as possible because my head hurts, and then when I close my eyes the whole world is flashing like a strobe light, which is made even worse because of the light sensitivity! Ugh, it was a mess. But the Immitrex was great stuff and knocked it out cold. Except that it's causing some minor bone pain around my shins that goes away quickly, so it's worth it. Last night the bone pain happened while I was sleeping, and I remember part of a vivid dream where I thought my feet were being harvested or re-attached. I remember waking up and checking that they were still there!

I had a routine chest x-ray to check for fluid in the lungs, which is common when you're bed-ridden and don't get up much. Luckily I was given the chance to walk to the x-ray room instead of being wheeled around in a bed, and it was nice to sort of "get out" and see some of the other parts of the hospital.

Lunch today was the first meal where the mucositis I'm slowly developing started to become a problem. I'm still doing phenomenally well, according to the doctors and oral medicine folks, but have started developing some canker sores along the rear edges of my tongue, and some lesions in my upper gums. The canker sores make it painful to move your tongue while eating, like picking food from your teeth and all the other stuff your tongue takes part in. But my appetite is still there, and the nausea is being kept at bay, so things are looking good :)

My dad stopped by after checking out the Chinese New Year parade in the International District, and brought the new version of iLife with him. I'm excited to try the new iPhoto with its face-matching and geo-tagging features on our 20,000+ photo collection. Cindy and Brian stopped by just before my dad left, but I ended up sleeping the whole time they were here since we had just finished another mile-walk around the floor and I was exhausted. Sorry about that!

Today I had a small fever of 99.8 for several hours before it went down. The doctors expect fevers, and this one wasn't enough to worry about. It's notable since up until this point my temperature has been perfectly normal.

Johanna is finally feeling better, and was well enough to stop by tonight so that we could hang out and watch Monk. She's had a cold for the last couple of weeks and has been playing it safe to make sure she was 100% over it before coming in. Yay!

Day +3 - Bicycle bell, sore calf, some mucositis

2009-01-30T15:42:00.000-08:00

Rachael, a friend of ours who works at UW Medical Center, stopped by and had this great gift for me, pictured on the left (click to see a bigger version). It's a coffee cup-shaped bicycle bell!! We had been joking that I needed a bicycle bell for my IV pole, for those times when I'm walking the halls and get stuck behind a bunch of residents and doctors. We fastened it to the pole and it works great. How cool is that? Looking forward to my next walk :)

Last night I had a great night of sleep. I only woke up once at 6:30 am for vitals and again at 8 am for some other reason. The Ativan anti-anxiety drug is definitely the key to a good night's sleep. I asked the nurse to put it on my orders which will cause them to ask me each night if I want it. This way I won't forget like I did the other night, and ended up tossing and turning until morning.

My calf is still incredibly sore, and last night the nurse came by with a water pump and heat pad. The pad is basically a sheet of plastic with thousands of narrow channels for water to circulate. The pump heats the water and then circulates it through the pad. I tried it for a few hours last night and it helped a little bit. This morning I woke up and it was still very sore and sensitive to the touch. I limped a few laps on our morning mile walk, but by the time we'd finished it was limbered up and feeling pretty good. Though it's become incredibly sore again after resting it for a while. The doctors tested my blood for muscle problems, which I didn't even know was possible, and reported today that they all came back negative. The most likely explanation is that it's a result of the chemical imbalances taking place in my system, and that a cramp I might have had is just taking longer to recover because of it. In the grand scheme of things it's not a big deal, it's just surprising that it would be sore this long.

The oral medicine woman came by again to inspect my mouth for mucositis. She said it looked really good, but that some mucositis was starting to appear, but that it was relatively minor and didn't consist of any open lesions or ulcers. Woohoo! I'm starting to notice some of the mucositis symptoms that I had last time, like tenderness when I move my tongue around and increased sensitivity around the gums when I brush my teeth, so keep your fingers crossed that it stays relatively minor and doesn't go into full-blown hell. Last time I was unable to eat or hardly drink by this point, so I'm doing 100 times better this time around. Just recently I found out that the oral medicine woman is a guru on this kind of stuff, and works closely with Dr. Schubert, world-renowned as the leading expert on oral mucositis as a result of stem cell transplants and cancer treatment. I continue to be impressed by the highly-credentialed staff here.

The 2nd dose of methotrexate chemotherapy was administered today, again in a small syringe. This is to prevent the new stem cells from growing too quickly and potentially becoming overly hostile, and giving them time to acclimate to their new environment and set up shop. The next and last doses will be on Day 6 and Day 11.

I'l leave you with an absolutely hilarious and touching comment that was posted by my friend, Simon, the day I got my new stem cells.

To Steve's new stem cells:

Thank you so much for leaving your home, your family, taking that long flight (aren't those airline seats just the worst?) and enduring the indignity of being pushed around through needles, bottles and tubes. But I think you're really going to like your new family. Stever's an awesome guy, and he's always up to something fun and exciting. There will be scooter riding (which, lemme tell you, is *hella* fun), walks, coffee (you little guys do like coffee, right? Right!?!?) and all sorts of fun, crazy adventures. You'll get to learn some new languages. OK, they're not really languages, but we geeks like to think that they are. Think of all that time in front of the computer as down time. Relax. Find something fun to do, like, oh, make new white blood cells! Yeah! You guys love doing that!

You're really going to like the rest of Steve's family - they're wonderful people, who are so grateful that you made it here. And of course there's the amazing Johanna, who will love you just as much as Steve does.

Because Steve and Johanna are such fabulous folks, they of course have lots of friends, who are now your friends too. Feel free to add us on Facebook - we'd love to be friends with you. And if you ever want to hang out, or want to go check something out in your new home, or grab a meal, just let me know and I'll be ready to go. Especially if you convince Steve to come along on his scooter.

So go forth little stem cells, and multiply. Good luck getting settled in your new home, and please don't hesitate to call, text, email or even send smoke signals if you need anything.

Your new friend

- Simon

PS. Happy Birthday Stever!!!! :-)

Day 2 - Blood clot in legs?

2009-01-29T16:51:00.000-08:00

Last night went better, but I forgot to take my usual dose of Ativan, an anti-anxiety drug, that helps me sleep. I didn't have a headache last night, but I tossed and turned until about 6 am before realizing I hadn't taken Ativan the night before. Crap! It probably also didn't help that just before going to bed I stumbled across a blog about a guy who had undergone a cord blood transplant, and how his mucositis started on Day 3. It's day 2 for me and last night I started getting that "funny" feeling in my mouth. So being paranoid about that and the lack of anti-anxiety drugs probably contributed to all that tossing and turning.

Around 8 am I finally dosed up on the Ativan, and right afterwards Val came by to get me up, breakfasted and walked. Well, that made for quite a groggy morning :) I caught enough sleep throughout the morning and afternoon so that by about 3 pm, I was well rested.

When the doctors came on their rounds this morning, I mentioned the soreness in my right calf that had been bothering me since last night. It felt like a cramp, and I didn't think too much of it, but since the chemotherapy and bed rest can lead to increased risk of blood clots, I wanted to point it out. They prodded my calf a bit (ouch!) and scheduled an ultrasound for that afternoon. The ultrasound guy came by with a huge machine, and spent half an hour tracing all the veins in my leg from my groin to my foot. Every so often he would make a note and take a snapshot for his report. You could clearly see the skin and muscle tissue, and where the veins snaked through. Along the way, he would squish a vein closed to measure its elasticity, and would also use artificial coloring to show which direction the blood was flowing (e.g. red for vein and blue for artery). Everyone once in a while he would dial in to a vein, and then hit a button which would cause the sound of the blood flowing through it to come out of the speakers. It was really interesting.

His conclusion was that there was no blood clot currently, but that a blood clot had likely occurred in the past, causing the thickening of the vein wall that he was observing. It was also on a shallow vein, so it was less important than if the clot had been in a deeper vein. He also observed the same thickening on the other leg, indicating a clot in the past there too. You could see that the walls were thick when he squished it and it didn't compress much.

Check out the quick iPhone snapshot I took. The thumbnails on the right are places he documented for his report. The area at the top left is the current ultrasound location, and you can see the artificial blue coloring indicating an artery. The waveform below is a real-time sound of the blood pumping through the artery.

Day 1

2009-01-28T23:33:00.001-08:00

Not much to report, except feeling like crap last night. Skip forward a paragraph if you don't want to hear me complain about it. Around 9 pm I started getting a headache, so I asked the nurse for some Tylenol. Unfortunately Tylenol rarely works for my headaches, but with my low platelet count I'm not allowed to get Excedrin, which usually does the trick. The headache got worse, and by 10 pm I was in agony. I hate getting headaches, and they feel especially worse when you're confined in a small environment. It was one of those headaches where it becomes impossible to sleep or rest in any position, and it feels like someone drove a nail behind your eye. Light, sound and movement all trigger the pain, and it's impossible to make go away. For me, headaches also lead to intense nausea, so I knew I needed to resolve it before it got out of hand. Unfortunately, another side effects of headaches on me is that it has a big impact on my motivational skills. My tendency is to just curl into a ball with my head in my hands and stick it out. Luckily, the small voice in my head reminded me that I needed to do something about it, so I got on the horn again to the nurse and asked for something stronger. She called the doc and he prescribed oxycodone. Even the lights on my IV pump were giving me shooting pains. Once the oxycodone went down, I hunkered down again and started feeling the nausea come on. I've had oxycodone in the past, and it's given me nausea before. But it was worth it. After a few rounds of vomiting and getting my mouth all cleaned up each time (to avoid the nasty mucositis mind you), the headache finally started dissipating and the nausea cleared up. Puking in bed sucks. You're supposed to use the little pink bucket by the bed that's specifically for this purpose instead of running to the toilet, since they need to measure the fluid output of the vomitus. Fun.

So this morning I woke up with a small headache still there, but by the time I'd eaten breakfast and did another mile lap around the hospital floor, it was all cleared up. Thank god. I think the problem was partially the lack of sleep I had yesterday, but with all the different medications it's not uncommon to have side-effects like that. Almost every medication and IV drug I'm taking lists nausea and headache as a side-effect, so it's amazing that I even feel good at all sometimes pumped up on all that stuff. The doctor wrote an order for imitrex, which is a migraine medicine, so we'll give that a shot next time.

The methotrexate chemotherapy drug that was given this morning went fine. The purpose of this additional chemotherapy is to slow down the growth of the new stem cells so that they don't become hostile too quickly. It's given on days 1, 3, 6 and 11, so this morning was the first dose. I was a little concerned about more chemotherapy, but the amount is really tiny. The nurse came in with a syringe about the diameter of a pencil, and it was only about an inch full. They don't really anticipate any side effects from these small doses.

The neutrophil count today is just about 0, at 0.01, right where it should be. Having very low neutrophils like this is where it starts getting tricky to keep from getting infections, since even at levels below 0.5 you run the risk of getting infected by your own bacteria. I've been feeling minor chills go over my body every once in a while today, and this is consistent with how it felt last time. It's sort of that ominous, sickly feeling that you get sometimes right before a cold comes on. The doctors expect fevers and infections, so each day past the transplant where I don't have a fever is another day in the bank.

A follow blogger named Michelle recently had a cord-blood transplant a few months ago right here in this building, and she's doing great, though even on Day 69 she's still battling a few viruses and carries her IV pump around with her. Hopefully the time will fly by fast, but Day 1 went by pretty slowly and it sure seem like a long way away to be thinking about milestones like Day 28, Day 50, and Day 100. That's all of February, March and April.

Today I hung out with my dad in the morning, then Johanna's sister Val came by and joined me on my afternoon mile-walk in the afternoon. I'm reading Into Thin Air which is a page-turner, but chose to put it down and get a few hours of sleep after dinner to prevent any headaches tonight. Cindy and Brian came by to watch Lost, which was totally confusing since I don't remember much of last week's episode. Time to catch up.

Over and out.

The waiting game begins

2009-01-27T16:24:00.000-08:00

I woke up this morning feeling great, in fact I'm feeling better than I've felt all week. I complained again to my doctor that it makes me a little nervous that I'm feeling so well, since I keep thinking it must mean that the chemotherapy didn't hit me very hard. She reassured me that everything is going great, and that I should just enjoy the fact that I'm feeling well. She pointed out that my counts are still dropping, and that my neutrophil count is at 0.07, which is very low indeed, which means the chemotherapy is definitely working. So I guess I'll just enjoy myself and not worry so much :) The other side-effect I'm noticing from the counts getting lower is that my hematocrit is decreasing, which measures the percentage of red blood cells to total blood volume. When hematocrit goes down, there aren't as many red blood cells to carry oxygen, so your heart beats faster and it's easier to get fatigued. I'm starting to feel the effects of this today.

Today they took down the warning signs in my room which warned nurses to gown up and use eye protection when emptying my urinals, since there was still a toxic amount of chemotherapy being released from my body. One of the nurses said that the amount of chemotherapy in my urine was more than some breast cancer patients were subjected to. Crazy. So I guess my body is clear of chemotherapy toxins now. Except that the sign will go up again tomorrow since I'll be getting a dose of methotrexate tonight, and another 3 doses over the next 10 days. Methotrexate is another form of chemotherapy. The purpose of giving it now is actually to slow down the growth of the new stem cells. Strange, right? Well, with mismatched stem cells, meaning, the stem cells came from someone else and not me, there is a risk that graft-versus-host may come on suddenly once the stem cells start growing. Slowing down this growth helps the little stem cells set up shop and get more acclimated to their new environment so that they don't find it hostile right away. Even with a perfect 10/10 match (I'm only a 9/10 match), there is still a risk of GVHD, since there are always some minor differences between the blood DNA.

The other downside to methotrexate is that it can also cause mucositis, so I'm still doing everything I can to prevent it. Over half of all cancer patients develop oral mucositis so badly that it requires their chemotherapy doseage to be reduced, impacting the patient's prognosis. The main problem with mucositis is that it's so painful that it can become impossible to eat or even drink water, which then causes infections and weight loss, which then causes further problems. Food also tastes terrible since the taste buds on your tongue are essentially wiped out, so trying to prevent mucositis is extremely worthwhile to one's well-being. For good measure, I just now rinsed my mouth again with the special mouth rinse.

The snot guy came today to measure my lung capacity and collect some snot. This is another clinical trial I signed up for that not only helps the researchers, but helps me as well, since the snot they collect is analyzed for infectious diseases and in some cases have warned doctors of a virus a patient has before the patient exhibits any symptoms. All I have to do is exhale into a little device, then sit there as the tech guy squirts a saline solution into my nose and collects the results. The little device measures the amount of air you exhale, and I had the best results on the floor today - 5 liters of air. He said they've never had anyone in the hospital do 6 liters, so it sounds like I have a challenge ahead of me :)

Johanna's sister, Val, flew up from Los Angeles today and will be in town for a week, which is cool. She's a real trooper for leaving sunny California to visit us up here, since the weather in Seattle right now is terrible! This afternoon Val came by and hung out with me at the hospital, and we walked a mile around the hospital floor and caught up on stuff.

Now that the transplant day has passed, there's not much to do except wait for the new cells to engraft, keep from getting mucositis, and keeping clean and preventing infections. It will take 2 to 3 weeks for the stem cells to engraft, and there is still about a 30% risk that they won't, which would mean that my current cells grow back enough and end up killing off the new stem cells. The bummer part is that we won't know whether this has happened until Day 28, the day we do another bone marrow biopsy and tests are run to see exactly what percentage of donor cells versus host cells are still in the body. So this is why it's just a waiting game, and for the next 28 days we just have to cross our fingers and hope the new little stem cells start doing their job.

Here's a little chart showing what to expect through Day 100 and beyond:

Transplant!!

2009-01-27T02:54:00.000-08:00

I'm pretty tired, but just wanted to write that the transplant is underway and going well! It's actually happening as I type this. Unlike an organ transplant, a bone marrow transplant is simply a blood transfusion, except that the blood consists of pure stem cells, not mature blood components like white cells and platelets. The stem cells know that their place is inside the bone marrow, and they automatically migrate there after entering the bloodstream. No direct injections into the bone are needed.

Johanna, my parents, Cindy and Brian showed up around 11 pm, since we had received word that the cells might be here early. It turns out they didn't show up until 1:30 am, so my parents snoozed for a bit while the rest of us chatted and watched Roscoe Jenkins on the hospital movie channel. We munched on the cupcakes Johanna had made for the event. The nurse was great and kept us up to date and fired up for the big moment. She even chilled some ginger ale for faux-champagne toasting!

The next we heard, the courier was waiting for a taxi from the SCCA and the stem cells arrived a short time later. They came in a normal, everyday picnic cooler. After cross-checking the paperwork and double-checking records, the transfusion was officially started. Everyone sang Happy Birthday and I opened a few cards from my family. My parents had brought a couple of balloons, so my mom tied them to the ends of the bed. We toasted with the ginger ale, took some pictures, and then everyone headed home for some sleep. Poor Brian has to be to work at 8 am tomorrow, so it was neat that he stayed up.

Even though it doesn't carry the weight of a big procedure, it's still an exciting and momentous event that has been in the works for 6 months now, from being diagnosed back in June, going through several rounds of chemotherapy and blood transfusions, searching for donors, finding just one out of 10 million that matched, and the rest of the events leading up to and preparing for this day. I'm just really happy that everything is going as planned, and especially grateful that the donor was willing to step up and do this and help save my life. Not only did she have to endure several medical tests and blood draws, she has been taking injections for the last several days to push her stem cells into her peripheral blood, then spent several hours yesterday morning hooked up to a machine giving blood. I'm so grateful for her for doing all that, and am trying to figure out what I want to say when I get the chance to write her.

Here are some pictures from the night's event :)

Waiting for the cells to show up

Nurse Erika begins the transplant!

All the nurses sign a little card :)

The tiny stem cells appear as little particles in the tubing

Happy Birthday to me!

Counts finally dropping

2009-01-26T12:51:00.000-08:00

I just got my latest blood counts, and the numbers are definitely trending downwards. On the left is a plushy red blood cell which I've got hanging from my IV pole to celebrate. Platelets are at 72 and white blood cells are at 0.7, not as low as they've ever been, but steadily dropping. It's weird to be cheering for them to go down, but it makes me feel a little better since it means the chemotherapy is doing its job. I was getting a little worried that I might be *too* healthy (haha yeah right) and that the chemotherapy might not have been strong enough. But based on the drop in white blood cells from just yesterday to today, I don't think I need to worry anymore.

Take a look at the charts below. The purple bar on the left was when I had induction chemo a few months ago, and the purple bar on the right was from the conditioning chemo just last week. The green area is the normal range, and you can see that the induction chemotherapy a few months ago finally knocked things into remission for the last several weeks. The recent conditioning chemo is causing a downward trend similar to the one that happened right after the induction chemo, before the counts came back up again.

White blood cells

Platelets

Hematocrit (% of red blood cells in body)

ANC (bacteria-fighting ability)

So as you can see the main issue we'll be watching out for is infection, since my white blood cells are expected to stay around 0 for the next couple of weeks. They dropped like this when I had induction chemotherapy as well, and a whole rash of issues like liver problems, fungal infections in the lungs, and a slight case of pneumonia popped up because of it. So we'll be very careful for the next couple of weeks to make sure I stay really clean. We'll also be watching out for graft-versus-host disease, which comes up in 50% of transplant recipients in the first few months, and can range from a whole variety of things, like skin rashes and organ problems. I've already started taking medications to prevent it, but there's still a 50/50 chance I'll be dealing with some sort of GVHD issues so the doctors will be doing a lot of monitoring to catch things early.

One of my physician's assistants came by and brought a picture of a patient of hers who is celebrating his 25th transplant anniversary. He's living a healthy life and sends her a Christmas card every year. I got a little teary-eyed thinking about it, since it really puts the whole thing in perspective and how big of a deal I'll look back on this time 25 years from now. I hope it can just be something that I had to take care of and got it done, like getting a crown or a cavity filled. And maybe it will be. There are certainly other transplant patients who are running around in perfect health a year out from their transplant. Or maybe 25 years from now I'll remember this time as a celebration and will be looking at life as something to continuously savor.

Today a person from oral medicine came by to check out my mouth. This is one of the several clinical trials I signed up for to provide researchers with more data, but this particular one has a lot of benefit to me since it means I'll have constant monitoring over the mucositis situation. I remember the trial saying that they would come by every few days starting on Day 0, so today is the day. She inspected all corners of my mouth and noticed some thinness starting in the gums, as a result of the increased acidity in my mouth because of the extra mucous and saliva. She brought me a new toothpaste with thinner, softer bristles and added baking soda to my saline mouth rinse, which she says will help thin out the saliva. It feels good to be taken care of like this.

That's about it for now. Had a great lunch of Ivar's clam chowder and hard-boiled egg from the room service menu. So far salty food still tastes the best, so I've been sticking to things like pretzels, chicken noodle soups and egg sandwiches. The nurse just stopped by to add a new antibiotic to my pole o' bags, and other than the occasional blood draw or vital signs check, it's been a nice and quiet day.

Stem cells on the way

2009-01-26T10:25:00.000-08:00

Just got word that my new stem cells are on the way! They're expecting them at SeaTac airport tonight around 8:30 pm, and they won't arrive at the hospital until about 1 am. I guess they have to go to the lab first for treatment. So it looks like another day similar to yesterday, then things should liven up around midnight.

Ready for transplant

2009-01-25T22:28:00.000-08:00

That's me doing another couple of miles around the floor. The floor is shaped like the letter "A" and it takes 10.5 laps to complete a mile, including the little ends of the "A", so there's a little bit of back-tracking. There are emergency exits at each end, and Johanna and I are in the habit of kicking the door-jam before turning around. My sister thinks this is cute.

Today's day of rest went ok. It's not really a day of rest, it's more like a day to let the chemotherapy toxins finish draining from your body. Literally. I did a lot of peeing in these last 6 days. Just a few days ago I weighed 180 pounds and am now back down to 165. Most of it was from fluids, which they kept me heavily pumped up on during the chemotherapy. I think the infusion rate was 240ml/hr, which is about 1 1/2 gallons of fluid a day, not including the water I was drinking myself or from meals. I am also on a variety of other drugs, in both pill and IV form. One is a drug to ward off potential seizures that could occur from the Busulfan, one of the chemotherapy drugs. Another drug reduces the chance of GVHD (graft-vs-host disease), which I'll be on for a while even after I leave the hospital. Another drug helps protect your bladder, since the breakdown of one of the chemotherapy drugs can cause bleeding in there. There are drugs to protect your liver, and drugs to fight my not-quite-gone fungal infection. It's no fun being hooked up to the IV pump or taking a dozen pills a day, but it helps to know why they're there. One of the nurses left a fat reference manual called the "Drug Guide for Nurses". I haven't looked at it much, but it's nice to have since it can be hard to remember why you're taking that one particular drug with the funny name.

Today we put a new dressing on my Hickman catheter. The dressing is really just a square piece of sterile sticky tape that covers the entry point. They rip off the old tape (fun), sterilize the area, then put new tape down. It doesn't sting as much as the PICC line for some reason. Up until a few days ago the dressing included a round patch called a bio-patch, which covered the entry point and protected it from bacteria. Now they've switched to a different kind of patch that is supposedly better, and this one has clear goop instead of the bio-patch, so now you can see the entrance wound and suture in all its glory :) It's kind of cool, and makes a better impression when showing it off to people. I feel more like Iron Man now.

My dad hung out for a while and we talked on the phone with my aunt, uncle and cousin. My sister and Brian came over again and we watched more of Monk, then chatted with Joe who stopped by as well. Ryan and Joanna stopped by with their baby and I showed them all the decorations in my room. Johanna and I fiddled around with the video chat more since she's still at home with a cold, and my dad even got my mom up to speed on the video chat at their apartment. All in all it was a busy day!

I think I'm ready for tomorrow, but I'm not really sure what to be ready for. For example, I was expecting to feel awful by now, but I don't really feel that bad, relatively speaking. In fact, I ate the most food I've eaten in a day since I got here: a bowl of cereal for breakfast, cheeseburger and potatoes for lunch, chicken noodle soup, grilled cheese sandwich and pretzels for dinner. And right now I am absolutely craving crunchy tacos. At this point in my induction chemo, I was lucky to get down a few pieces of Cheerios since I was experiencing the full-on hell of mucositis and watching the insides of my mouth slough out.

I guess I'm a little worried that if I'm not feeling absolutely terrible, then the chemo drugs must not be working to their full effect, which might cause the donor's blood not to engraft as well. In fact, I've been watching my counts for the last 6 days, and they haven't really dropped very far at all. They're all still way above what my "normal" levels had been like for the last 6 months. But the doctors and nurses say not to worry, that they see this all the time, and that we're just seeing the lingering effects of blood cells that haven't died off yet. It'll take the new blood about 2-3 weeks to engraft and that I should expect the old blood counts to bottom out about 3-4 days after the transplant.

They also say to expect things to get worse, since mucositis usually doesn't surface until around day 3 after the transplant and I might not be able to eat food during it. I've been brushing my teeth and using the special mouthwash constantly, so hopefully it won't be as bad as last time. I was on IV nutrition for weeks last time, and while it was good to have as a backup plan, it was annoying sometimes and hard to get weaned off of, since you were never really hungry and you couldn't just quit it cold turkey, they had to cycle you off of it. IV nutrition can also be a source of infection since it's a breeding ground for bacteria, so if I can keep off it this time, that would be great. I'll also be taking just enough immuno-suppressive drugs to prevent my old blood from fighting off the new blood, but not enough to keep the new blood from beating out the old blood and leukemia cells.

It all seems like such a delicate balancing act. All I can really do is keep my body prepared and hope for the best really.

Cross your fingers!

2 days til transplant

2009-01-24T21:48:00.000-08:00

Hi, it's Cindy again blogging from Steve's hospital room. Steve is feeling about the same today. He is keeping food down pretty well but still feeling queasy. And he walked two miles again today!

My dad spent most of the day here hanging out with Steve. They spent much of the time reading their books :). Steve's reading a pretty good book called "Diary" by Chuck Palahniuk.

Today was the last day of chemo for Steve (hurray!) and tomorrow is a day of rest before the transplant on Monday. Steve's counts went down a little today, but not much. This chemotherapy stops the production of blood cells, but it can take some time before the old cells die off. After the transplant, new healthy cells will be produced to replace the old cells.

Today Steve had fun setting up the iChat video so he could "visit" with Johanna since she is home sick still. It's pretty cute. Here's a picture of Johanna waving from home, as seen from Steve's laptop screen. You can see us in the top left corner looking goofy. We had fun playing with the different backgrounds. You can put yourself in Paris or in the clouds or under water with fish. Here's another picture of Johanna with a blacklight effect.

Tonight we watched a few hours of the show called Monk. It's a show about an obsessive compulsive detective and it's pretty funny. We started with the first episode of Season 1. There are eight seasons so we have a ways to go :)

Brian and I checked out the cafeteria on the first floor. He had a pile of beef enchiladas which, I have to say, looked pretty unappealing. The cooks piled on a little extra because they were about to close and were going to throw it away, anyway. I played it safe with yogurt and chips. Luckily, Steve has had good luck with his room service food, which is pretty tasty. You have to be quick with the food around here, because last call is at 7:00 pm.

Steve says hi and thanks for all your comments. Over and out.

3 days til transplant

2009-01-23T20:03:00.000-08:00

Hi everyone, Steve's sister Cindy here. My husband Brian and I are here visiting Steve, mainly watching him lie in bed :)

My dad spent a few hours visiting with Steve today. Unfortunately, Johanna developed some cold symptoms and was turned away at the hospital when she came to visit in the afternoon. My mom is also coming down with a cold, so she hasn't been by in a couple days. Major bummer. I hope they start to feel better soon so they can visit.

Here is a picture of Steve that Johanna took this morning. Lookin' good, Stever! Steve is feeling more nauseated today than yesterday and has been asking for consistent doses of Adovan, the anti-nausea drugs, which help a little. He says it feels better if he stays still, so he has not spent a lot of time out of bed. He did manage to get up today and walk two miles, which is more than I can say for myself, so that's pretty impressive! Woohoo! Nic and Rachael came by and walked with him for part of it.

Steve's platelets and blood counts are going down a little each day since he was admitted on Monday, which is to be expected. But they are still far higher than they were a few months ago--thanks to the last round of chemo he had, which brought them all up into the normal range. Today his platelets are at 115 (down 27 since the day he was admitted), and his hematrocrit is 33 (down 9), and neutrophils actually went up a little to 3.91 (from 2.38). White blood cells are at 4.77 (from 4.84).

A couple days ago, we decorated Steve's room with tons of pictures that he can see from his bed. Here's a picture of the pictures!

That's about it for the update. Steve says "hello." He has a chocolate milkshake to drink now.

Transplant day -4

2009-01-22T12:38:00.000-08:00

Here's a picture of Steve today. I think the doctors are doing an excellent job of managing the fluid retention and reducing that puffy look. Every day Steve likes to tell me how he gained 10 lbs and then lost it again. Steve is still eating well and managing the nausea. When I left last night I was worried about his balance, but I was excited to see that his balance was good this morning. I talked to the nurse and she told us what we could do to still get exercise if he is not quite stable on his feet and they have a cool walking apparatus to help. So far we don't need it and Steve did his typical morning mile - after which he gets a well deserved nap.

I got to talk to his PA this morning who did one of his spinal taps and lumbar punctures at the SCCA. It's really nice to have familiar faces who know Steve over time. We got to talk a lot about keeping Steve moving and out of bed. She confirmed my suspicion that a day of downtime and sleeping all day can be a set back - making it that much harder to get moving again (succumbing to the "jail" effect as she says).

This is day 4 of his preparative treatment so every day feels like a big accomplishment - closer to transplant day! Steve says "Hello blog audience! thanks for sending me strong thoughts! Hopefully I'll be feeling better soon."

Day 3 post (transplant day -5)

2009-01-21T23:05:00.000-08:00

Steve's been twittering so maybe he'll end up posting before I do - bear with us if so. Today Steve had a successful day - despite his feeling yucky he still walked 2 miles (morning and mid-day). He is battling nausea with some meds that leave him sleepy, so he's- sleeping. Truth be told he seemed a bit unsteady on his feet in the evening. His team of doctors rounded early this morning so I missed them but heard they were impressed with his ability to eat.

I'd like to get a schedule set up for visitors though visiting may really be more of a spectator sport of watching Steve sleep (and keeping me company). I'll try to post a picture tomorrow morning.

Day 2 update (Transplant day -6)

2009-01-20T19:06:00.001-08:00

Here's an updated picture of Steve from after dinner tonight. Even though he had a rough night, I was still able to convince Steve to get out of bed today and he had a rather successful day. He ate normal portions for breakfast, lunch and dinner and we walked 1 mile after breakfast and 1 mile before dinner. 1 mile on his wing of the transplant floor is 10.5 laps so it's a lot of pushing his IV pole down a cluttered hallway but I'm excited he can be convinced to do it still. He's setting up the network hub as we speak, because they don't have wifi here. His parents also visited today. The TV in his room has a channel that they broadcast movies on (sans commercials). The selection of movies is decent (steve says a lot of chick flicks and box office thrillers) but in addition to the regular channels there is always something on.

Now, imagine that you are plugged into a wall 24hrs a day and there's a TV right by the bed and you aren't always feeling good - you can see it would be difficult to get up and do anything. So I'm pretty excited when he's willing to sit up or get up and do something.

Last night I decorated his room a little:

Today is his last day of Cytoxan (a myelo suppressive drug that heavily suppresses the bone marrow) and tomorrow he starts Busulfan (a myelo ablative drug that fully destroys bone marrow activity) which he will do for 4 days. Then he will have a "day of rest" where the drugs can clear from his system before he gets his infusion of donor cells. Steve says "I'm staying busy with the nurses and all of the blood checks and weight checks".- so there you have it!

guest post: hospital day 2 of prep chemo

2009-01-20T10:38:00.000-08:00

hey everyone. Johanna here.
I left last night and Steve was in good spirits though a little puffy faced (this is from the steroids and fluid retention). This morning I arrived and he had tales of an awful night of nausea and vomiting. Sounds like he didn't get much sleep. I think after some rest and some food he may be up and about once again. We will be working with the docs today to get his symptoms under control so he can keep his appetite.

In hospital, first day of chemo

2009-01-19T13:53:00.000-08:00

The first day of my hospital stay is off to a good start. We got here at 8 am and I was started on IV fluids pretty quickly, since at least 4 hours of hydration are required before they can start the chemotherapy. Compared with my stay at Swedish hospital, I'm starting to like UW Medical Center better. For one, they have much newer IV equipment. The pumps are quieter, the IV poll itself has a handle for pulling it around and isn't squeaky like my other polls have been, and the interface is pretty fancy and even shows the name of the current drug or chemotherapy being infused. The TV in the room has full cable and even a movie channel and includes a separate remote, which is one of those things you take for granted until you try and use one of those dysfunctional hospital remotes affixed to the bed. The last remote I used like that had just one button for the TV - you could only increase the channel. To turn the TV off you had to go through *all* the channels to the end. So something as simple as a real TV remote is pretty nice.

I also get to wear my own clothes here! This rocks, since the hospital gowns aren't that comfortable and it's hard not to feel like a sick person when you're wearing them. So I've got comfortable sweat pants, t-shirts and hoodies, and feeling much more like a normal person. The other cool thing is that the nurses have a chart of my blood counts posted on my bulletin board, which they update every morning. This is great, since normally I have to bug the nurses to get a copy of my labs, and then I put them in my own spreadsheet. With my own clothes and these kinds of attention to detail, I feel a lot more taken care of and less like a sick person.

So far the only downside is that the internet connection is wired only. No wireless! It's much faster than Swedish, but I may have to smuggle in a small wireless router or hub so that Johanna and her mom and anyone else can share the internet connection.

We started chemotherapy an hour ago and the first session just finished. The regimen is Cytoxin first, which suppresses the immune system, then Busulfan, which suppresses the marrow and everything else. I'm on a clinical study where they've reversed the order of these chemotherapy drugs. Normally they do Busulfan first, then Cytoxin, or "Byoo-sigh" as they call it, but it's been shown that doing Cytoxin first is less toxic overall so they're experimenting with that. Apparently they've been wanting to do it in this order for years, but until recently the Busulfan had to be taken orally, so they had to do that one first, otherwise patients would have problems keeping the pills down. Since it's a clinical trial, the researcher has been in on a regular basis to draw blood to check the levels of Cytoxin in my system for their research.

Other than having to pee all day, the only side effect I've experienced so far is right after the Cytoxin chemotherapy drug started. The feeling was like being drunk, oddly enough. I'm still a bit groggy, and things going on in the room feel sort of far away. The drug also irritates your sinus passages, so I experienced a side-effect like sniffing some toxic fumes, which is pretty much what's happening :) The Cytoxin infusion was only for an hour, so I'll just be on hydration fluids and various medications until tomorrow. For example, they're giving me a drug called Mesna to help the bladder, since the chemotherapy can cause bleeding inside your bladder. Fun stuff :)

My daily blood count chart

Not a bad view, it's nice to see the trees.

My fancy IV pole.

Last day at home, tomorrow in the hospital

2009-01-18T22:16:00.000-08:00

Today is my last day as a free man for a while. Tomorrow I get admitted into the UW hospital to start the chemotherapy regimen that will wipe out my bone marrow. Next Monday is the actual transplant, which consists of just a simple infusion of the donor's stem cells. They're smart enough to make their way inside the bones and start producing new blood. No surgery or anything. On the left you can see the Hickman catheter that was put in on Friday. The white disc is called a biopatch, and contains antibiotics that keep the entry wound free of infection. You can't see it, but there is a small incision up by my neck where the tube actually enters the vein. Between the biopatch and the neck vein, the tube tunnels under the skin. This is partly for convenience so that the Hickman doesn't stick out of your neck, but I also found out from a nurse that the tunnel acts as a natural barrier for infection, since the distance between the vein and the entry site are so far apart. The ends have tape wrapped around them which the necklace clips onto to keep the whole assembly from dangling around. So far it hasn't been too uncomfortable and most of the time I forget I have it. Pretty amazing stuff.

Today I met up with a friend for tea at Remedy Teas on Capitol Hill, got another round of antibiotics at the SCCA, went for sushi and noodles at Blowfish, then met up with a friend for coffee at Cafe Vita. Afterwards, I walked downtown, caught the bus home, then met up with Johanna and had dinner with my parents to help send me off to the hospital. Admittance time is 8 am tomorrow morning, so Johanna and I are just finishing up some light packing before we head off to bed.

I've enjoyed seeing all my friends and catching up recently, and look forward to seeing everyone when I get back out again. I should be able to have visitors almost any time during the next 4 weeks, but to make things easier I think Johanna and I will put together a simple sign-up sheet for visitors so that no one has to worry about when might or might not be a good time to come by. You may be given a gown and mask to wear, but as long as you don't have a cold or scratchy throat, it should be ok. Though I may not look very healthy to look at some of the time :)

My friend, Josh, joked that my marrow transplant should be called a "camaro transplant", and my mom remembered that and decorated this miniature Camaro with a bunch of cool decals! For example, the license plate says "platelet" and there are decals like NMDP for National Marrow Donor Program, and HGB for Hemoglobin. The car is yellow since I'm on the yellow team. See if you can figure out all the decals :)

9 days until transplant

2009-01-17T23:45:00.000-08:00

Today we switched to an IV version of anti-fungal antibiotic, since the voriconazole can cause problems during the upcoming chemotherapy. The infusion took place at the SCCA, and they also taught us how to change the dressing on the Hickman and prepare the dressing for taking a shower. With the PICC, I needed to wrap the arm in saran wrap and carefully tape the ends to make the whole thing waterproof, which was hard to do by yourself. It was also painful since your arm moves around a lot and the tape pulls at your arm hair. The Hickman dressing is waterproof by itself, so all that needs to be done is to cover the ends of the Hickman tubes with a special wax paper called parafilm. A few seconds preparation time and that was it. The nurse set I could even go in the hot tub with it, as long as it's not submerged. Not bad!

After the infusion I met my boss for coffee, then met up with some coworkers later that evening for some Rock Band. Tomorrow is another hour-long infusion and marks the last day of freedom before I go into the hospital. Can't wait to get things rolling.

Hickman surgery successful, still sedated and recovering

2009-01-16T16:35:00.000-08:00

I probably won't remember parts of what happened this afternoon, so I'll try to write as much as I can before the amnesiac effects of the sedation wipe it all away :)

The surgery went well. Last night and this morning I showered using a special antiseptic soap on my chest that they require patients to use before surgery. They'll actually postpone the surgery if you don't do this. The way the Hutch works, the pre-soap ritual was probably the result of someone's research that found that patients using a surgical soap in advance of this surgery decreased their risk of infection by some percentage. Anyway, I did the soap, wore freshly laundered clothes to the surgery room (also required), and it was on.

The procedure involves 2 incisions, one at the jugular vein in your neck, and the other in your chest above your nipple. Rather than having an unsightly catheter sticking out of your neck, they tunnel the tube under your skin between the 2 incision points. This way, the catheter enters the vein at your neck, but comes out of your body lower down on your chest. With your fingers, you can actually feel the catheter under the skin. This layout makes it much more convenient since the ends of the tube can rest in the natural chest cavity pocket there. I have a necklace with a clip on the end to keep it from dangling around too much.

The illustration shows a single-lumen Hickman. Mine is a double-lumen Hickman, which means it has 2 tubes coming out, and the tube itself is split into separate chambers all the way to the heart. This allows them to do things like an infusion on one line, while drawing blood from the other. With a single lumen they would need to interrupt the infusion.

Apparently Dr. Hickman, who invented the device, retired just a few months ago at the ripe old age of 83 and was the sole person doing these surgeries until the day he retired. I'm not sure if that's a good thing, or a bad thing :) The doctor who performed mine studied under Dr. Hickman for years, and was great. The surgery went perfectly.

The procedure itself wasn't too bad, though I'd read up on it so I knew pretty much what to expect. The doctor and nurse also did a great job of explaining, and did a show-and-tell on the ultrasound so that Johanna and I could see the actual jugular and where exactly in the jugular he would insert the catheter. It pulsed with my heartbeat, and you could see it squish and move around as he pushed down with the ultrasound tool.

Really, the most uncomfortable part of the whole procedure was the lidocaine injection into the neck for the incision, since it burned a bit, and when they used the tunneling tool to open a passage under the skin for the catheter. Everything else was relatively easy. The amazing part was that once they got everything sterilized and set up, the procedure itself took only 10 minutes. But it took a 45 minutes to properly prepare and sterilize the room. What I mean is, I was covered from head to toe with a sterile tarp and a piece of metal near my head to suspend it from my face. A window was cut out of the side so that I could breathe and talk to the nurse that was applying the IV sedatives and pain-killers. Around the surgery site, the tarp was taped down and the site of the surgery was sterilized with antiseptic soap. The doctors, technicians, and nurses were fully gowned and had face masks and hair nets. It was nice to see the amount of care taken to keep the place sterile, since infection is the leading source of problems with these central lines

A combination of ultrasound and x-rays were used to position the guide wire into the proper position in the superior vena cava above the heart, and to make the appropriately-sized hole in the jugular vein for the catheter. I was on a flat table beneath a large x-ray machine, and the table was tilted back with my feet above my head. So the experience was like being in a narrow tent, lying backwards downhill. I'm glad I wasn't claustrophobic! But like all my previous procedures, once the sedative started flowing, everything felt great :) I was relaxed and calm and just enjoying the fact that the procedure was happening and would soon be over.

Recovery was fairly quick, and after some string cheese, Oreo cookies, and apple juice (I wasn't allowed to eat all morning and was starved), we were done! We headed to Taco Time to satisfy my taco craving, and then stopped by my old office to see coworkers I won't see for a while. It's been a few hours since the surgery, and I'm hardly noticing the Hickman at all, except for some soreness in my neck, which is expected since there are a lot of small muscles up there which they had to cut through. I think it may prove to be less of a hassle than the PICC line.

Tomorrow we take a class on caring for the Hickman, such as changing the dressing and how to protect it when taking showers, and I'll have an hour-long IV infusion after that and again on Sunday. Then Monday I'm admitted into UW Hospital. It's sort of a relief to have this week over with, since there were a lot of unknowns, like what the results of the CT scan and data review would be, and how I would feel after getting the Hickman line. It all feels pretty good, so I'm excited about moving on to the next stage.

Ciao for now! Thanks for all the comments :) I love reading them all, they really make my day!

10 mile walk

2009-01-15T22:37:00.000-08:00

By the way, here's a route of the 10 mile walk I did yesterday. It was a nice walk, not too much traffic except around the Montlake bridge and the 520 overpass. I hit the Burke-Gilman trail for part of the way back after leaving the University. The zig-zag walk through Capitol Hill was great. It's one of my favorite areas and offers lots of inspiring view of the Space Needle and Puget Sound, especially refreshing after the hill-climb from Montlake.

On the way, I listened to a great episode of This American Life about inmates at a high-security prison as they rehearsed and staged a production of Hamlet. It was fascinating listening to murderers acting out a play about murder, and one critic said it was the best version of Hamlet he'd ever seen. Here's a link to the episode.

I parked the scooter in the neighborhood at the top right and walked clockwise. At the bottom left is where I hung out at Starbucks for a bit to fuel up and play on the internet.

"Go" for transplant!

2009-01-15T19:16:00.000-08:00

We got the good news today that the CT scan showed "reduced inflammation in line with recovery from infection", which was good enough for Dr. Doney, the attending physician in charge of my transplant. She gave me the good housekeeping seal of approval and after the necessary consent forms were signed, gave the green light for the transplant! The whole meeting was relatively uneventful, though she did a mock drum roll when announcing the pulmonologist's report. :) The donor is also ready to go, and passed her physical exam with flying colors. She'll start taking drugs on the 22nd to release her stem cells into her peripheral blood, and then on the 26th will go in to have her stem cells drawn. I'll be ready on the receiving end and they'll fly the stem cells over and infuse me as soon as they get here. It's getting exciting!

So tomorrow I'll have surgery to get the hickman line installed, Monday I'll be admitted to UW Hosptal to start 6 days of chemotherapy, and the Monday after will be the transplant.

We are at dinner with my sister, Brian and my family to celebrate the "go" decision, even though it's kind of weird to be celebrating something like undergoing a transplant. But we're celebrating the chance at a new life, so that's pretty cool :)

12 days until transplant

2009-01-14T18:03:00.000-08:00

Tonight I am blogging from the huge Starbucks on Capitol Hill. I walked here from Ravenna, an exact 5.0 mile walk, according to Google Maps. I've been wanting to do a full 10 miles before I go into the hospital and there aren't many days left to go, so today was the day. I rode my scooter and parked it on a quiet street near Ravenna, and am looking forward to riding it when I get back to it. Hopefully I can still find it :)

Yesterday Johanna and I finished the Health Safety class and the IV Pump class at the SCCA, which were pretty informative. Actually we ducked out of the Health Safety class a quarter way through since they were running out of chairs. We had already taken the 2nd half of it earlier, but I had been under sedation earlier that day from a bone marrow biopsy and spinal tap and pretty much forgot everything that happened that afternoon, so we decided to take it again. I even went to the dentist and had fillings filled that day, and it's the first time that I can't point out which teeth were worked on, since the sedation causes a bit of amnesia. Johanna and I were the only participants in the IV pump class, and we each had pumps and a pretend Hickman line to practice on. The nurse showed us how to load the backpack with the IV bag and pump so that you could carry it around, and how to program the pump. We felt like old pros, since we had figured out a similar IV pump when I was on IV nutrition after being in the hospital for my induction chemo. We won't pick up the pump and backpack until after I go home from the transplant, and then every other day we'll visit the clinic for supplies such as saline syringes, sterile wipes, and my medications.

Today I went in for a blood draw and the much-anticipated CT scan, which will determine whether we go forward with the transplant or not. I can't imagine there would still be inflammation in the lungs after all this time and since I feel so great, but that's what I thought last time and there it was, so it's hard to know. We'll know the results of the scan tomorrow.

Well, it's time for the 5-mile walk back to my scooter. I'll report tomorrow on the result of the CT scan and the data review meeting where we'll make the go/no-go decision. Wish me luck!

13 days until transplant

2009-01-13T11:46:00.000-08:00

I'm hanging out at Grand Central Bakery near the SCCA, nursing a cup of cafe vita coffee and eating a huge croissant. Not much to report. Yesterday I had a scheduled visit with my transplant team and met Dr. Doney, the attending physician that now heads my team. Each month they rotate attending physicians and other staff between the 12 different teams, so Dr. Doney will be in charge of my transplant. She's been at Fred Hutchinson for 30+ years, and she was well-informed about my case and funny too. We'll meet again on Thursday for a go/no-go meeting, and if all goes well with the upcoming CT scan tomorrow, I'll go in for surgery on Friday to have my Hickman central catheter put in. The Hickman is sort of like the PICC line that I had in my arm, except that this one is inserted into your chest directly above your heart, so there's less chance of the line moving around or the line getting blocked. It's good timing too, since I'll need to switch from the voriconizole antibiotic to an IV antibiotic 48 hours before the chemotherapy starts, so it'll be nice to have the Hickman line in since it's an hour-long infusion each day.

In transplant speak, I'm at day -13 now. Day 0 is the day of the transplant, and everything is measured in terms of days before or after that. There are checkups at day 50 and day 100 for example. And they've done so many transplants that they know when to expect side-effects like mucositis (day 3 - day 13) and hair re-growth (day 15) to occur. The chemotherapy to wipe out my existing stem cells is called conditioning, and starts on Day -7. Right now I'm in the preparation stage.

Friday will mark the end of my freedom for several months, since from then on I'll have the Hickman catheter and we'll have to change the dressing regularly until it's removed. I'll be tethered to it 24 hours a day for a month starting next Monday and could have the Hickman for a while after that. So Friday is sort of a psychological milestone. But I'm looking forward to it. I'm ready to get this transplant done. My last hospital stay is far enough behind me that it's starting to be a distant memory, rather than something that feels like it just happened yesterday.

In other news, I'm sad to say that Dawn, the fellow blogger I mentioned in my last post last week, passed away last Thursday. My heart goes out to her husband and family.

That's it for now. I'll report back with more soon. Last Friday we started off the weekend great with a stay at the Salish Lodge in Snoqualmie, courtesy of our friends Jenny and Greg. We were there while the falls had a tremendous amount of water going over them as a result of all the recent flooding, so it was something you don't normally see.

2.5 weeks to go

2009-01-07T16:53:00.000-08:00

I'm sitting in a Starbucks on Queen Anne nursing a double short latte. It's raining buckets outside, and my rain jacket is soaked. I just walked up from Fremont while listening to the latest This American Life podcast. The wifi is free and I'm buying coffee with the Starbucks cards I got for Christmas, so it's a good deal. I don't have much to report, except that things are still on track, and I'm keeping busy with appointments at the SCCA and spending time with my family. Besides attending classes, my only job right now is to stay healthy and stay hydrated. My nurse wants me to drink 3 liters of water a day, which isn't really so hard since I end up drinking a lot while taking all the necessary drugs 4 times a day.

Johanna and I were a little down last night and this morning, since a fellow blogger who underwent a transplant has taken a turn for the worse in the last few days. She had a cord-blood transplant over a month ago, and has been in ICU for the last 4 weeks with small bits of good news, but generally steadily getting worse. It started with a kidney complication, which led to fluid accumulating in her lungs which they had to drain each day. Her lungs became damaged and she went on a ventilator soon after. Possibly because of all the medication and antibiotics, her heart started beating irregularly, and they had to restart it once. Her husband has been steadfastly blogging the whole time. And all the time I'm hoping for the best and have been assuming that, though things are bad, they will turn around eventually and they will all look back on it as just some really tough times. It's like watching a dramatic movie and thinking to yourself that surely the director won't end it with a tragedy. You just never really think that the worst could actually happen. So it has been sad to read the last few blog entries and realizing that it's possible she won't pull through. She's 19 (sorry, she's 28), and though her leukemia was worse than mine and she didn't go into her transplant in remission, reading about her struggle has really had an effect on us. And from her pictures you can see that she is a vivacious, young 28 year old with tons of energy and is smiling in basically every picture. Yesterday they got news that her leukemia had returned with a vengeance, and they don't plan to restart her heart if it stops again. She's been under chemical paralysis and heavy sedation, so they might not even get to say goodbye to her. It's all very sad and so I think it has made Johanna and I a little down the last few days. So cross your fingers and toes and pray that she does ok. Her name is Dawn and her blog is at http://www.goshdawnit.com/.

Captain Dawn

Yesterday I met with the transplant team and it was an uneventful meeting, which is great. Everything is still on schedule and we're just waiting to see what next Wednesday's CT scan shows. I'm getting anxious now and am ready to get this thing done with so that I can get back to work and a normal life. Assuming the CT scan looks good, the transplant schedule shouldn't change from the following:

1/12 Mon - Clinic visit with transplant team
1/13 Tue - Food safety class
1/13 Tue - Managing care at home class
1/13 Tue - IV pump class
1/14 Wed - Blood work
1/14 Wed - CT scan
1/15 Thu - Patient/caregiver support group
1/15 Thu - Data review (go/no go meeting)
1/16 Fri - Surgery for Hickman central catheter
1/17 Sat - Hickman care / teaching session
1/19 Mon - Admitted into UW Hospital
1/20 Tue - Start 5 days of intensive chemo
1/26 Mon - Transplant

That's about it for now. Check out these awesome turkey burgers our friends Nic and Rachael made for us the other night! That's Nic, with their cute but hyperactive pug, Lola. :)

Happy new year!

2009-01-02T12:55:00.000-08:00

Hello from 2009! Our trip to Los Angeles was great. We basically spent the whole time in the beach cities, relaxing or shopping or eating, either in Manhattan Beach where Johanna's sister, Val, lives or in Hermosa Beach where our hotel was. Walking between the cities was simple - just a quick stroll up or down The Strand, a pedestrian and bike trail connecting most of the major beaches in LA. Both Val's house and our hotel were on the Strand, so we probably put in at least 10 miles of walking, and the scenery along the way was gorgeous. On one side was the blue ocean with people surfing or playing volleyball on the beach (even in December!). On the other were a wide variety of closely-packed and expensive beach houses. You'd see a spanish colonial next to a Victorian next to a small cottage next to an ultra-modern glass and steel behemoth. And almost all meticulously cared for by their owners. There was a lot to see. The beach community definitely has a sense of self-pride and belonging, and it wouldn't be hard to get accustomed to their lifestyle. Alas, after 5 days we headed back home to our cold, wet Seattle :)

It seems like half the people we met had colds while we were there, with phlegm all colors of the rainbow, but we did our best to avoid too much close contact and I seem to have managed to avoid it all. Though I did get a sunburn on my face and my doctors gave me a slap on the wrist about it the next day. After the transplant, I'll have to be more careful, since graft-versus-host disease (GVHD) can flare up as the result of a single sunburn, and could take months to get back under control.

The day after we got back, I was scheduled for a blood draw, a nutrition class, an EKG, and a checkpoint visit with the transplant team. Everything went well, I passed all my tests from the previous week with flying colors, and all my blood counts were normal. Super cool. They are also checking the Voriconazole (anti-fungal antibiotic) levels in my blood to see if the dose needs to be adjusted. The next day I went back in for another blood draw, as my donor's sample blood had just arrived at the lab. They've already determined that we match as closely as possible through our HLA typing, but continuous blood checks are needed to make sure that my blood doesn't develop antibodies against my donor's blood. New antibodies can be inherited by getting a transfusion, or sometimes they can occur out of the blue.

Nothing much is expected between now and next week. Next week I'll have another checkpoint visit with the transplant team and that's it. The week after, we'll do another CT scan to see if the lung infection has cleared up, and if so, we'll proceed with the transplant.

As of now, the schedule looks like this:

Jan 14 - CT scan to check lung infection
Jan 15 - Transplant team makes go/no-go decision on transplant
Jan 16 - Hickman line (like PICC line, but goes in your chest)
Jan 19 - 5 days of intensive chemotherapy to wipe out marrow
Jan 26 - Transplant

It's turning out to be a nice day so I think I'll head off to a coffee shop somewhere. Ciao! Here are some pictures from our trip:

Good news!

2008-12-24T23:55:00.000-08:00

Good news! The spinal tap was negative for leukemia cells in the spinal fluid, the bone marrow was normal for the 2nd time in a row, and the initial culture from the bronchoscopy tested negative for infection! Woohoo! The bronchoscopy results aren't definitive and they are still waiting on other cultures to finish growing, so it doesn't mean there isn't a fungal infection, but we're hoping that my immune system in combination with the crazy, hallucinogenic antibiotic called Voriconizole will do the trick.

Oh, and now *all* of my counts are in the normal range (except for the platelets, which are just a tad below), which is super amazing. It feels great. I'll update the graphs in the next few days.

We spent Christmas Eve with my parents at Cindy and Brian's house and opened all our presents, since Johanna and I are flying out to L.A. tomorrow morning to be with her family down there. It was nice that it was still a white Christmas around here, even though all the streets are starting to get a little slushy. But before you go, please enjoy this short video of the Super Duper Reindeer Pooper in action, courtesy of Johanna :)

Super Duper Reindeer Pooper

Spinal tap, bone marrow biopsy, MUGA, and 3 fillings!

2008-12-24T08:21:00.000-08:00

I'm sitting in the infusion room at the SCCA, waiting for the lab technicians to irradiate my blood. My dad and I braved the elements to get down here at 7:15 am, even though it dumped another 2" on Seattle last night! It's called a MUGA scan, and they use it to check out your heart. The procedure is pretty simple: the technician draws some blood, radioactive markers are added to the blood, and then the blood is infused back into your body. A gamma camera (cool name) records the journey of these radioactively marked blood cells throughout the body and can be used to make 3D videos of your heart pumping. Right now I'm waiting for them to irradiate my blood so that they can put it back in me so I have about a half an hour to blog about what went on yesterday. Oh, and I have to bring special documentation from the lab when we go to the airport tomorrowsince I'll be radioactive for a few days and may set off geiger counters at the airport. Wow. Apparently they can detect someone with radioactive blood from 20 feet away. We'll see how much fun that makes tomorrow's flying event. Hopefully my next blog post won't be about how I was stuck in an interrogation room for 3 hours suspected of smuggling nuclear weapons :)

Yesterday was a busy day: I had another spinal tap, another bone marrow biopsy and aspirate, and, just for good measure, 3 cavities filled by my dentist. I had a cleaning last week and we wanted to be extra sure that any sign of decay was taken care of before the transplant, since tooth decay can be a big issue when your immune system goes away. Since I was under heavy sedation for the spinal tap and biopsy, it went great as far as I was concerned. :) The last thing I remember is the doctor wiping the area on my back clean with a sterile pad, then waking up in the recovery room. The last time I had a spinal tap I suffered through some really awful headaches as a result of the spinal tap, caused by the brain readjusting its spinal fluid reservoirs due to microscopic leaks that happen during the procedure. The best remedy is supposedly caffeine, so while I was in the recovery room I downed a double coffee, got another coffee on the way home, downed 2 sodas, then finished off the day with a Vietnamese iced coffee. It's 8:30 am the next morning and I'm still a little jittery. But anything to keep that spinal tap headache away.

After the MUGA scan, I'm busy with more tests, meetings and classes until 2pm today. Woohoo! My next appointment is a flight out of here to L.A. tomorrow, and then I don't have to be back here at the SCCA until the 6th of January.

Oh, and it's snowing again in Seattle! We got a couple more inches last night and it's still coming down. The weather is supposed to get warmer after Christmas so it will probably start melting off.

Happy holidays!

Bronchoscopy went well

2008-12-22T17:36:00.000-08:00

The bronchoscopy went well today. I was a little anxious beforehand and just wanted to get it over with. Unfortunately, I had downed a tall double latte earlier in the morning and with no food in my stomach, it caused a little problem which I'll mention later.

The nurse started an IV and explained each step of the procedure. She talked fast, but it still took 15 minutes to cover everything. I did some research about it last night so I had a general idea of what to expect. But my heart started beating a little faster as some things came to light that I wasn't expecting. Such as the fact that I would only have a mild sedative and would be aware of nearly everything, realizing that the size of the bronchoscope tube was about the size of my pinky, and that they would be going through my nose instead of my mouth. She also mentioned that family members tended not to do well when observing the procedure, since the patient often looks like he's gasping for air and coughing and experiencing extreme physical discomfort. Well, that doesn't sound so good. I asked how long the procedure took. I was hoping maybe a couple of minutes, 5 at the max. When she said 20 minutes I realized that this might not be a walk in the park.

Next, a bunch of people filed in including the doctor, a resident, the technician, and another nurse, for a total of 5 staff. The doctor and resident were pretty serious, probably because they had to drive over from UW and were annoyed about the snow conditions. :) They weren't too keen on joking around.. With Dr. Goldberg, we sing songs like "I wanna be sedated" and generally have a pretty good time, even during a bone marrow biopsy. Or maybe I'm just that easily entertained. So including my family we had 9 people in the room. Everywhere I looked, doctors and nurses and technicians were standing at their little stations, ready to go, each tending to their carefully organized medical tools. It was a little intimidating.

Mentally preparing myself for the procedure

First, I gargled a foul-tasting liquid for 3 minutes, essentially liquid lidocaine, to numb up my vocal cords. Since the bronchoscope would be fed through my nose, the doctor inserted a long Q-tip covered with more lidocaine to numb up my nasal passages. Now, I've never had anyone clean out my sinuses, so I've never experienced the sort of painful but tickling sensation of having a q-tip pushed 5" up your nose. My pinky finger only fits half an inch up there. I thought I was doing pretty good staying relaxed, but with the coffee, the number of people in the room, this Q-tip sticking out of my head, and the fact that I was going to be awake for most of it must have triggered some adrenaline response since my heart began to beat really hard. A bunch of alarms started going off and the doctors all stopped what they were doing and watched the heartbeat machine behind me that I couldn't see. Great. The next thing I knew, an EKG machine was rolled into the room by another nurse, and the doctor was on the phone ordering additional blood work for me (I had already been poked that morning). So we drew some blood, got an EKG reading, and by the time all that was done I had returned to normal on my own. Whew! The doctors suspected that it was a result of the change in medications I'd had recently. I think it was just nerves. So after that I focused on getting into a good mental state.

We started over with the long Q-tip. He then inserted the bronchoscope into my nostril and pushed it as far back as the Q-tip, and then removed the Q-tip. Every few inches, another technician would squirt lidocaine from the tip of the bronchoscope to numb the area. When he got to my vocal cords, he had me say "eeeeeee" and then squirted lidocaine on them, which felt really weird and instantly shut me up. From then on I could only give a thumbs up or thumbs down. Obviously you have an urge to cough since you have this massive foreign object in your lungs. But they are able to suppress the urge by administering fentanyl, apparently 80 times more potent than morphine, and the doctor and IV nurse worked in conjunction to balance it all out. After that it was pretty smooth sailing. To determine the infection, they then squirt saline into the lungs and the vacuum the fluid back out. It's called BAL, or bronchial alveolar lavage, and they did this 3 times. This beats the alternative of doing a biopsy, where they would actually cut a small chunk out of the lungs which has the risks of bleeding. Johanna took a video of the view from the bronchoscope camera, and you can clearly see the trachea and forks in the bronchial tubes along the way, and the times when they squirt the lidocaine. It's really amazing. Oh, and at the end I even smile and give a thumbs up :)

Video of the bronchoscope monitor

I think I'm more scared than I realize when I need to have a procedure that I've never done before. But the bronchoscopy turned out to be not so bad. I only really coughed a few times, and once the sedative kicked in it went by pretty quickly.

Oh, since my procedure wasn't until 11:45 am, I tried to take the bus downtown with Johanna so that I could spend some time walking around Cap Hill and hanging out at coffee shops, but after waiting an hour we gave up and called my dad, who chauffeured us down there in his nice A6 Quattro (all-wheel drive rules) with heated seats. Ahhh. After dropping Johanna off at work, I hung out at a Starbucks for a bit to warm up, then hiked over to Denny, closed because of the snow, and walked up to Cap Hill. The weather was clear and there were hardly any cars. It felt great. I love the way snow completely changes a city. I walked down Roy and over I-5 which drops you right into the SCCA campus.

Here are some of the pictures:

Walking up Denny

Seattle is a pretty hilly city

Almost to the SCCA campus

Everyone's happy that we can go home now!

Back in the SCCA

2008-12-21T01:38:00.000-08:00

It's late and I should probably be in bed, but I wanted to give an update. I'm also having too much fun blogging from the laptop in front of the fire, watching it continue to snow in Seattle. The picture to the left was taken by my sister, who snapped a guy skiing down a hill near their house. Let there be snow!

I rejoined the transplant program at the SCCA last Thursday and have gotten reacquainted with the nurses and doctors on the transplant team. Unfortunately, I had to start all over again instead of leaving where I left off. But luckily I was only 2 days into it so it wasn't too big of a deal. I'm just happy to be in the program again since it feels like they are really there to take care of me and get me to a transplant. The SCCA (Seattle Cancer Care Alliance) is 7 stories high, and my daily itinerary usually involves visits to departments on different floors, like radiology, infusion, pharmacy, the blood lab, the transplant team, and the bistro. So I end up bumping into people from my transplant team regularly throughout the day which gives the place a kind of neighborhood-like feel. The SCCA is sort of one-stop shop for everything I'll need before and after the transplant, which is a satisfying feeling, though the amount of appointments each day can be exhausting. They also keep an amazingly tight schedule. Rarely do you sit in a waiting room for long, but your day is also booked solid, so they can't afford to hold things up. I even have a scheduler person assigned to me whose sole duty is to keep me updated when my schedule changes. Each day I get an updated itinerary for the next few days. By the way, the SCCA is made up of doctors from the Fred Hutchinson Cancer Research Center, UW Medicine, and Seattle Children's. It's a great way to bring a lot of knowledge to one unified place for treatment.

Now, the news: I'm still in remission (hooray!), but the fungal infection continues to show up on the CT scans. The doctors were hoping it would be gone by now. Luckily it's not affecting how I feel, so it's presence is only impacting the transplant schedule since I can't go into a transplant with a fungal infection. Since it's not going away on its own, the SCCA is being more aggressive about treatment and started me on a new antibiotic called Voriconozole yesterday. They waited to use it until now since it's pretty expensive and has some funky side effects including hallucinations, blurred vision, and "strange dreams". Well, I have strange dreams all the time so I'm not sure what to expect, but I'll be on the lookout for anything that might be stranger. I also haven't seen any hallucinations yet (darn), but I have noticed pulsing flashes when I close my eyes, and colors seem to be desaturated, or washed out. It also makes me really sensitive to light. It goes away soon after, but you just have to wonder what the hell it's doing in there. Oh, and when they said expensive, they meant it: $4,400 for a 1-month supply. Luckily my co-pay was only $50. Whew!

Tomorrow I'm having a bronchoscopy to see if they can figure out what's causing the inflammation, in case it isn't a fungal infection. It shouldn't be a big deal, but with my healthy immune system I'm disappointed that my body didn't kick this thing to the curb already. The bronchoscopy involves feeding a fiber optic cable down your throat and into your lungs (I'll be sedated, whew). There is a light on the end, and they can control the tip of the cable to choose between one airway or another. The image at the end is also transmitted to a viewing monitor. Once the inflammation is found, they squirt saline around it from the end of the cable, then vacuum it back up. This pulls in the fluid around the inflammation so that they can see what's in it. I've never had one before but I'll be sedated, so it shouldn't be a big deal. Wish me luck!

In other news, I've been enjoying all this new SNOW we keep getting in Seattle! The ruler in our backyard shows 9" so far. I walked about 3 miles in the snow today and am looking forward to walking Johanna to her bus stop tomorrow morning. I'm excited to find some free time so that I can hang out at a coffee shop in Cap Hill or near downtown while the city is still blanketed with snow. We're expecting 4 more inches tonight. Woohoo!

I promised an x-ray picture from my CT scan, and here it is. This is a cross-section of my lungs, as if you were looking up through my body. The inflammation is the little doughy ball on the left. There are a couple of other areas, but this one was the biggest.

Inflammation is the little doughy ball on the left

Unclean, wah

2008-12-18T10:04:00.000-08:00

Yesterday I went in for a CT scan to see if the inflammation in my lungs had disappeared. I can't start the transplant process with any kind of infection in there, especially if it's a fungal infection. Unfortunately, the inflammation is slightly smaller but hasn't disappeared. At this rate it will take months to disappear on its own. It's not getting worse, however, which is good. The assumption is that my immune system is basically keeping it at bay. The next step will probably be a biopsy so that we can figure out exactly what it is and treat it properly. So far I've only been on general antibiotics. The biopsy involves either sticking a needle through the lungs to see if they can hit the area of inflammation, or going in through the bronchial tubes. Neither sounds very appealing. I was kind of bummed when I saw the inflammation since I was feeling so well and fully expected it to be gone. I'm fine with doing biopsies and tests, but sometimes you have to get yourself mentally psyched up for these things, and I really wasn't expecting to have to do it. So I was a little freaked out when I first heard the news. It's also a bummer since it will likely delay the transplant progress yet again by another month or so. I think I was mostly bummed about this part, since I get frustrated when things don't go smoothly. So I moped around for a while yesterday but I think I feel mostly OK about it now. The next step is to coordinate with the SCCA to see what they want to do since it's their call now, as I'll be under their care starting today.

Oh, I got copies of the x-rays on CD and will post some pictures online so you can see what we're talking about. It's cool, the CT scan is made up of hundreds of little x-ray slices, and the CD includes software to view the slices, so you can use your mousewheel to zoom back and forth through the body. Neat stuff.

Last night and this morning it snowed a bunch, which always puts me in a good mood, so maybe that was my consolation prize :)

Jingle Bell Fun Run

2008-12-14T23:08:00.000-08:00

Not much to report from the medical side of things. I took another long hike the day after I hiked that 8-mile trip around Lake Union. This time I started from South Lake Union by Johanna's work and walked along Myrtle Edwards Park towards Ballard. This trail goes through some strange territory once you pass the Magnolia bridge, where you enter a large area controlled by the Port of Seattle and the trail is literally lined on both sides with a high, barbed-wire fence. Very industrial. Tucked away near the back were hundreds of brand-new Audis and Volkswagens, and a slew of school buses. After some tacos from Taco Time and a quick stop at Starbucks to check email, I was back at the car and realized that I had walked 7.8 miles. I had assumed it was around 5 miles. I was a little stiff afterwards but it wasn't so bad.

Then today we got up early to do the Jingle Bell Fun Run, which is a 3.1 mile run or walk depending on your inclination (we walked). It was really freakin' cold out this morning and there was still snow and ice on the ground from the night before, but it was a good time. There were lots of adults and kids with Christmas costumes, and every participant was given a pair of jingle bells to hang from their shoelaces. So there was a lot of jingling and it was kind of fun and festive. The route took us from Westlake Center south through downtown, then north onto the express lanes of the freeway before doubling back downtown. In the tunnel everyone starts singing Jingle Bells so that was kind of fun. Afterwards we headed over to my old apartment and basked in the hot tub and heated pool with our friends Jenny and Greg for the rest of the morning. Ah, what a life. I won't make any comments about how I enjoy swimming around in the pool, since I got quite a bit of ribbing the last time I blogged about that, though it may have had to do with the fact that I had eloquently waxed on about it for more than just a few pages. Ah well, those were the good old days. Including my other walks, all in all I walked about 25 miles this week. Not bad!

This week things are starting to heat up again on the cancer side:

Monday - Blood work, tracking down medical records for insurance
Tuesday - Dentist for cleaning
Wednesday - CT scan to see if lung infection has cleared up
Thursday - Restart transplant program at SCCA (more tests, etc)
Friday - Meet with attending physicians to discuss transplant

Here are some pictures from the Jingle Bell walk, and from that weird-ass trail that runs north of Myrtle Edwards Park toward Ballard:
A cup of coffee definitely helped this morning for the Jingle Bell Run

We finished in 1 hour, 16 minutes

Eerie rail yard on the trail towards Ballard, from my hike a few days ago

Not the most pleasant trail, but it gets the job done

Marathons, triathlons, and a walk around Lake Union

2008-12-10T23:23:00.000-08:00

No, that's not me in this photo. That's my friend, Nic, who is running a series of marathons to raise money for the Leukemia and Lymphoma Society. He'll be running 13 marathons in all, and attempting to do them all in 12 weeks. I don't think my brain has fully grasped how incredible this is. But after raising money for the LLS by regularly running the Big Climb for Leukemia, a herculean effort in itself that involves running up 71 flights of stairs at the Columbia Tower, his cause became a little more personal after he discovered that I was diagnosed with leukemia. He decided to raise funds for the LLS on his own and started a blog called 13 in 12. Nic likes a good challenge, and by running 13 marathons in 12 weeks it also puts him in the top tier of the Marathon Maniacs group, a small, hardcore group of folks from around the world who can actually do stuff like this. He's completed 3 of the 13 marathons so far and has raised $1,386 as of last Tuesday. Please consider making a donation. The LLS is a great organization and making a donation is a great way for you to help out. Nic will be running a total of 388 miles in 66 days, and all you have to do is click a few buttons, whisk a few bucks (or 20 or 50) his way, and you're set. Not a bad deal, eh? You can read more about it on his blog. Nic was also mentioned in the UW Weekly newspaper. Cool!

My battle with leukemia has also inspired my brother-in-law's friend, Trevor, to enter a triathlon called the Ironman 70.3 Boise. Instead of raising funds for a particular organization, Trevor is just asking that you support him by signing up to be a donor in the National Bone Marrow Registry. Please, please, please do this. All it takes is $52, they send you a kit in the mail, you send back a cheek swab, and you're done. Out of 10 million people in the registry, I only had 3 matches, and only one of them was good enough to be my donor. Trevor is an oncologist-in-training and sees patients who are in need of transplants on a regular basis. By becoming a donor you're not only helping people like me, you're helping all the oncologists (and oncologists-in-training) who care deeply for their patients and want to see them cured. Read Trevor's post on the subject.

I did my own little part today by walking around Lake Union this morning with my laptop and backpack in tow. Total mileage: 8.1 miles. It took me about 3 hours, not including a stop at Starbucks to refuel and to get online. After this walk I was finally a little sore. With the others I felt like I could keep going and didn't feel sore at all. Though I think I'm sore because I sped up quite a bit during the last 2 miles to make sure I got back to my car in time before the parking meter expired. But I made it with 15 minutes to spare. Here's the route I took:

Here's a picture I took around the 4-mile point. It's a power station with the Seattle skyline in the background. Those buildings in the skyline are near where I started, and you can see the other end of the lake on the right side of the picture.

Good counts, scheduling info, trip to L.A!

2008-12-09T14:45:00.000-08:00

Lots of good news today. To start, I went in for blood work yesterday and got my latest counts. My platelets have settled down a bit from their high of 450 last week and are right smack in the middle of the normal range now, at 250. My white blood cell counts are at 4.5, which is smack dab in the middle of normal as well. Woohoo! Though there are still some blasts in the peripheral blood, which is concerning. I've updated the graphs in the right-hand column. Hemoglobin and hematocrit are still slightly under normal, which is surprising given how much energy I've had lately. For example, yesterday I walked 4 miles and have been doing sit-ups and push-ups each night for the last few days. Part of my recent exercise kick is that I feel like I've been given a new body and I want to see what it can do. Kind of like when you buy a new car. After my walks I feel like I could easily go a few more miles. I can't imagine how much energy I'll have if these counts actually get into the normal range.

Another reason I like walking these days is that apart from being relaxing, it gives me an excuse to listen to my podcasts and audiobooks. I realized that listening to my podcast gives me something to do while walking, and walking gives me something to do while listening to my podcast. Either activity on its own to me is relatively boring. I can't listen to a podcast on the couch since it feels wasteful. And if I'm out walking with nothing else to keep me occupied, I'll start thinking of somewhere else I want to be or something else I want to do and will end the walk pretty quickly. It also helps to have several hours of unstructured free time :)

Yesterday the transplant coordinator called about getting me re-admitted into the transplant program. Last week I called to put myself back on their radar, but it wasn't necessary at all. The intake doctor knew all about me and the team was up to date on my progress so far. That was really nice to hear. Those guys are super organized. She also gave me a rough schedule and a tentative transplant date, assuming the inflammation in my lungs is cleared up by next week (keep your fingers crossed). But if all goes well it looks like the transplant will be sometime in mid-January. Here's the rough schedule:

Dec 18 - Restart transplant program
Dec 19 - Meet with attending doctors
Dec 22 - Bone marrow biopsy
Dec 23 - More testing
Dec 24 - More testing
Dec 25 - Visit L.A. to visit Jojo's sister and family
Dec 29 - Back from L.A.
Jan 6 - Transplant team makes go/no-go decision on transplant
Jan 8 - Hickman line (like PICC line, but goes in your chest)
Jan 13 - Start chemo to wipe out existing marrow
Jan 19 - Transplant!

It's a tight schedule except for the first week in January, and it worked out perfectly with our already scheduled trip to L.A. to visit Johanna's family. I'm really looking forward to this trip to be able to get away from Seattle for a few days. And going somewhere with a warm climate and sunshine will be nice. Johanna's sister has a roommate and family already staying with her, so she was awesome enough to treat us to a fancy beach hotel less than a mile from where she lives. How cool is that? It should be a lot of fun :) I'm looking forward to finally meeting other members of the family that I haven't met yet. Johanna has met pretty much most of mine given all the events that happened this last year.

Oh, and the bank reversed the ATM withdrawals that were made after I left my card in the machine, so that's a relief. I'm happy they were so quick about it.

New backpack, vegging at bookstores, and my $500 lunch with coworkers

2008-12-04T22:03:00.000-08:00

I bought a new backpack for my MacBook Pro and have been excited to use it. It's the Patagonia Lightwire 25. It's well-designed, low-profile and relatively lightweight. It doesn't have so many pockets that you forget where you put something, the zippers open and close with one hand, the laptop area is well-padded, and it even has neat little features like special pockets to store dangling straps. After being in the hospital I realized that most of my creature comforts like my laptop, books, New Yorker magazines, snacks, camera, and other small things could easily fit in a backpack, so it seemed simpler to keep them all in one place instead of scattered around the house. I was also looking forward to spending some quality veg-out time at my favorite coffee shops and bookstores now that I'm feeling better, and my messenger bag can get heavy over the shoulder. The backpack also works much better on a scooter than a messenger bag. So there you go.

For the last few days I've been content to just stay at home and putter around the house, but today I was looking forward to venturing out into the world. I set up a lunch date with some coworkers for that afternoon, and then decided to spend the morning hanging out a local bookstore. I know, tough decisions, huh. After reading this uber-hardcore post from our friend, Nic, about how he ran 2 marathons and a 50k race over just 3 days this last weekend, I was pumped, and decided to hike down to the bookstore which is a little over 3 miles away. Hey, you gotta start somewhere. It would also give me a chance to use my new backpack. Woohoo! I know, I know, it doesn't take much to get me excited. BTW Nic has started running marathons (yes, plural) on behalf of the leukemia and lymphoma society, which is a great organization. Nic is my hero. He and Rachael also came to visit me in the hospital and gave me a bunch of cool stuff to watch on DVD. They make a mean turkey burger and are generally way cooler than I am. So armed with an audiobook on my iPhone, gloves and a hat, I set off for Third Place Books in Ravenna. It was a great walk, since you can stick to residential back streets the whole way, and it felt really good to get some exercise. Listening to an audiobook while walking I think is a great way to pace yourself, since I find that I walk really fast when I'm by myself with nothing to keep me occupied. I discovered the joy of podcasts and audiobooks while I was in the hospital since I couldn't keep my eyes open for long to read or watch movies, but I could listen to an audiobook with little effort. Right now I'm listening to The Graveyard Book by Neil Gaiman. After hanging out at the bookstore for a bit, I headed back home. Total mileage: 6.8 miles. Not bad!

I had enough time to get back and shower for lunch, then headed down to Capitol Hill to meet my coworkers. I grabbed some cash from a debit machine, paid a lame $3 finance charge, and slurped up a bowl of pho. One of my coworkers paid for lunch and another paid for coffee afterwards! The sun was out and everything was just great. Except that when I arrived at my next hangout spot that afternoon, the wonderful Elliot Bay Book Company, I couldn't find my debit card when I went to pay for parking. Panic set in, as I realized I must have left it in the ATM machine earlier before lunch. I sped back to the bank. At each red light I tried to check my bank account from my iPhone. By the time I parked I finally got logged in, and was horrified to see a slew of ATM withdrawals totaling $500. Holy crap, this really sucks, I'm thinking. I freaked out even more when I remembered that my card is also a VISA card and that this person could potentially wipe out my entire bank account and savings account, since it automatically overdrafts from savings. I called the credit union to get my card blocked, and we verified that no credit card charges were made against it. Whew. It's one thing to have a credit card stolen and a few thousand bucks racked up on it, since you can get the charges reversed without feeling any pain, but it's quite another to have the same thing happen against your bank account where real money is flying out the door. I'm essentially living off what's in my bank account for these months that I'm off work, so I was pretty damn scared. I guess I've been in the hospital so long that I forgot how to use an ATM machine. I'm pretty sure what happened is that I left the card in the machine and that the screen was still showing the "Yes, I'd like another transaction" message, so the thief didn't even need to know my PIN. Easy money, I'm sure a lot of people would have been tempted. Anyway, I got the dispute forms and filled them out so hopefully the missing cash will show up in a few days. Scary!

After that I went back to the Elliot Bay Book Company, browsed some books and hung out for a while in the nice, but dark, cafe downstairs, then headed over to pick up Johanna and her mom. All in all it might not seem that adventurous, but for me this was a very exciting day :)

Remission!

2008-12-03T15:16:00.000-08:00

This is kind of a long post, but I haven't posted in a week and it feels like we're at a turning point right now, so I have a lot on my chest :)

Yesterday I went in for more blood work, and the counts showed an even more dramatic improvement than the week before. Woohoo! The graph above shows my white blood counts and you can see that after the last round of induction chemo (the purple bar), the counts have actually returned to normal. The 4 orange bars are when I underwent less intensive chemotherapy. At the beginning of all this, Johanna said we should hit me as hard as possible to try and knock this thing out. I guess she was right :)

The chemo not only wipes out the cancer cells, but it wipes out most of your other blood cells as well, and you can see in the graph how my immune system completely tanked afterwards. This is normal, and once the bulk of the cancer cells were removed from the scene, the marrow could function normally and started growing healthy cells again. In addition to my white blood cell counts, most of my other counts are approaching the normal range as well, which is sort of amazing to me since I've been poring over these numbers for so many months now. In fact, my platelets are still climbing fast and are now actually *higher* than the normal range. When I saw this I must have looked a little frightened, since my oncologist laughed at me and said it was totally fine and that I should stop worrying. Combined with the news last week that my bone marrow was normal, we can technically say that I'm in remission. My oncologist said "it's like being able to tell a mother that she has a healthy baby". He was just as happy as we were.

Being in remission is emotionally weird. It's a strange feeling. For the last 6 months we've been fighting this disease, trying different types of chemotherapy, trying naturopathic remedies and just dealing with the weight of it all. When something is broken, the assumption is that it can only get better when you work on fixing it. So for the last 6 months I've been in the mindset that things are sucking, but that they will only get better since we're trying to fix it. Now that things *are* better, I find myself switching to the mindset that things are good, but that I should enjoy it while it lasts since things will only get worse. That's a hard transition to make. It's also a little hard to get too excited about being in remission since soon we'll be wiping everything out and starting all over again when I go to the transplant, and there are going to be a bunch of new issues like graft-versus-host disease and other unknown challenges to face once the transplant is behind us. I guess the depressing thing is that it feels like right now, in remission with my own blood, is the best I will be. But I'm trying not to think that way since I know it won't last long and we've got to try and fix this thing once and for all.

I'm also not out of the woods quite yet. If you remember, we discovered a fungal infection in the lungs and a possible case of pneumonia that I picked up while I had no immune system. The CAT scan two weeks back showed areas of inflammation in the lungs, which is the body's way of reacting to these infections. I've been on antibiotics and my immune system is recovering, so we assumed things were getting better. Unfortunately, yesterday's CAT scan showed the same inflammation. My doctor thinks it may have shrunk slightly, but the radiologist believes it's still the same size. Since I feel fine and haven't been short of breath or coughing, the plan is to assume things are getting better. We'll do another CAT scan in a couple of weeks to check. If all goes well, we'll head back into the transplant program which means contacting the donor, setting up a transplant date, etc. Otherwise we'll do a biopsy of whatever it is that's in the lungs to figure out what it is so that we can treat it.

The purpose of induction chemo is to induce the leukemia into remission, which it appears to have done. After induction, a person normally undergoes what's called consolidation chemo to further wipe out any stray leukemia cells and to minimize the chances of relapse. Consolidation chemo actually involves even higher doses of the induction chemo drugs (yuck), but for shorter periods of time. It can consist of anywhere between 1 and 4 rounds, where each round takes about a month to recover from. Yeah, lame. Finally, maintenance chemo is done afterwards to further prevent a relapse from happening. The problem with all this chemo is that the effects on the body are cumulative, and your organs and marrow can suffer a lot. I had liver problems and other weird issues after the induction chemo, so anything we can do to reduce the exposure to all this toxicity is a good thing. Not to mention that chemotherapy itself can increase the chances of other types of cancer down the road. Bleh.

So the issue we're facing now is whether to do consolidation chemo before the transplant, or skip it and go into the transplant as soon as the lung infection has cleared up. The risk of not doing consolidation chemo is that I could relapse in the next few weeks, which would throw a wrench into the transplant plans yet again. Since it's going to take another few weeks to recover from the various lung infections and at least 2 weeks after that to prepare for transplant, there is enough time that a relapse is possible. Obviously if the donor takes off on a world tour then we'd be forced to do consolidation chemo. But since things are going well we should be able to go directly to the transplant. We're crossing our fingers that I can stay in remission long enough to get there.

The other scary thing is that after undergoing hardcore, intensive chemo and seeing what can happen to your body when it has no immune system, I'm definitely not feeling as cavalier and invincible about battling this cancer thing. Up until the induction chemo the therapy didn't seem like a big deal. I was still working, going in for chemo every month or so, getting the occasional transfusion, and trying not to let it rule my life. And for the most part it didn't. The hardcore induction chemo gave us a little bit of a reality check as to how tough it can be, and gives us an idea of what we're in for when we go to the transplant. I'm not used to getting infections and being sick, and apart from the cancer, I've never had any kind of organ problems or any other serious problems, not even a broken bone. So when your doctor says you have liver problems and lung infections and all kinds of other weird crap because you didn't have an immune system for a week, it's very sobering. After the transplant, not only will I be missing my immune system, but I'll be taking immunosuppressive drugs for several weeks to prevent the immune system from functioning so that the new stem cells don't attack my body. So we'll have to be really careful.

It's also scary to read blogs about other people going through similar experiences, and seeing how some are doing great but realizing that others are having serious complications. For example, last night I was reading about an amazingly upbeat and awesome 27 year old woman with leukemia who just recently had a transplant and is now in critical condition and on a respiratory device after developing a serious liver disease. They've pumped several *liters* of fluid from her lungs and are running all kinds of tests to see if any other organs like her heart are being affected. I've assumed I'll get through this because I'm young, but it's sobering to realize that there are a lot of other young people my age that *aren't* getting through it easily. Some are dying. In other words, this is serious business folks. But I'm taking the long-term approach and looking at what's on the horizon, not just what's there tomorrow. And I think I'll be ok.

On a positive note, I feel wonderful, apart from being a little weak since I lost a bit of muscle while in the hospital (my legs looked even skinner than normal when I got out). But I've been walking 2-3 miles a day so that's helping. My new taste buds are finally growing in, and they are *loving* every bit of food they can find! Yesterday I had a huge helping of enchiladas for lunch, then a sandwich in the afternoon, then a big steak in the evening. And I was still hungry! The protein is good for my body since it's still re-growing all the cells and tissue that got wiped out from the chemo. Go body!

So now I'm just happy to enjoy some time off. I've been officially away from work for 6 weeks now, and only in the last few days have I *finally* been able to enjoy myself a little bit. I feel that after the miserable time I spent in the hospital, I deserve some fun stever time for a little while :) Oh and I had my PICC line taken out which is *so* nice. No more saran wrap around the arm to keep it dry in the shower or having it itch like crazy when the skin is irritated. It's the calm before the storm right now. The next round of chemo, to prepare for the transplant, will be super hardcore. So I'm happy to just lounge around, enjoy the moment, and get myself psyched up for what's next.

That's it for now :)

This is what success looks like

2008-11-26T18:26:00.000-08:00

I didn't want to jinx it, so I decided to wait a few days before blogging about being released from the hospital, since the last 2 times I gushed about how great it was to be back at home I got sent back to the hospital shortly after. But this time feels *different*. I feel great, I haven't had any fevers, I have a bunch of energy, I'm eating normally, and basically I'm *feeling* normal for a change. It's so uplifting. So yes, I'm back home again and loving it.

Yesterday I had another bone marrow biopsy to see whether the induction chemotherapy was successful or not. If I have too many blasts in the marrow, it means there are still leukemic cells in there and we would consider doing another round of induction chemo (ugh) or consolidation chemo (slightly less ugh, but still ugh) to try and finish them off. If the marrow looks normal, then we would start making plans to get back into the transplant program. Obviously you can tell which option I prefer.

So the super awesome news is that my oncologist called just a few hours ago to give me the good news that my marrow looks normal for the first time. Which means that I might be in full remission soon! We weren't supposed to meet with my oncologist until next Monday, so it's super cool that he and the pathologist were able to run the labs today and give me the results before the holiday. I'm still a little cautiously excited about it, but it's hard to dispute the lab results. In my head it seems possible that next week or the week after we might see more blasts, but the fact that I show normal marrow results at this point is great news. Some of the counts, including white blood cells and red blood cells, are coming up a little more slowly than we'd hoped, but other than that it looks pretty good. It's also hard to get *too* excited about these counts coming up since the transplant will just wipe them all out again anyway, but this puts me in a much better position before going into the transplant. No word yet on what the schedule will be.

Btw, here are my platelet counts since June. Each of those little spikes are the result of a transfusion. Except, folks, for that massive spike there at the end. That's *my* marrow making those platelets. Awesome.

Feeling great, but possible fungal infection

2008-11-22T23:23:00.000-08:00

Yes, I'm back in the hospital again. Joy. But that day that I got admitted was pure hell and I felt so miserable that I didn't really care about going back in. The alternative was to go back home and dread the thermometer reading that reads a fever, which means paging the oncologist at whatever hour of the night to get sent to the E.R. again, which is way more of a hassle than just being able to meander in to the hospital and go up to your room.

The day I got admitted started off fine, and my dad had just finished pushing the antibiotics through my PICC line and taking care of all the other nurse duties that Johanna normally does. We left for my doctor visit, but by the time I got there I started feeling really tired. Each time I stood up to walk somewhere, I needed to find the nearest chair as soon as possible. I didn't realize this was how you feel when you started feeling faint, I just thought I was really tired. So it wasn't until I got a chest x-ray and actually fainted that I realized, OK, this is way not cool. One minute I was standing in front of the x-ray machine, then I remember taking a deep breath, and then the next feeling I had is waking up from a refreshing nap. Except that I was on the floor of the x-ray room, being held by the wonderful lab woman who somehow managed to catch me and guide me down. I was like, "what happened? did I fall?" I remember the confusion of that moment so vividly. I didn't know if 1 second had passed or 20 minutes. The technician was awesome. She even brought a pillow and a cold washcloth to put on my forehead and let me lie on the floor for a bit. So here I am in the x-ray room, lying on the concrete floor under an x-ray table thinking "this sucks." I managed to get back to the doctor's office and then immediately got the shaking chills, which is never a fun feeling to have, even less so the way I was feeling. After telling my oncologist about the fainting and the shaking chills, he shook his head and was like, "That's it, you're going in today. Sorry." It was good that we did since I had fevers all day, then more shaking chills for 2 hours that night, then my fever spiked to 103.2. What a ride. Having that high of a fever is awful, since you start feeling delirious and your mind races thinking about all kinds of crazy things. Sleeping is impossible.

Anyway, what had happened was that my hematocrit levels (the percentage of red, oxygen-carrying blood cells) had dropped precipitously from 24% to 20% in just a few hours. A normal range is between 41% and 50%. My poor heart was racing all day just trying to keep me going. Even sitting down I couldn't get my heart rate below 120, and normally it's 60. So I got a couple units of red blood the next day and felt miraculously better a few hours later. It was unbelievable how better I felt. Today I'm feeling the best I've felt in 3 weeks. I am still amazed by the body and how easily it can adapt.

So the latest news is that after getting a CAT scan (a fun machine where you ride back and forth through a donut), they found what looks like a fungal infection in the top right lung. Technically it's called aspergillosis, and is pretty serious and typically only found in immunocompromised people. In fact, most sites I found online described it as such:

Invasive aspergillosis generally affects people who have compromised immune systems, such as people who have had a bone marrow transplant or solid organ transplant, people who are taking high doses of corticosteroids, and people getting chemotherapy for cancers such as leukemia.

Hm, sounds like someone I know. Aspergillosis is caused by breathing in aspergillus spores, a fungus (mold) that is pretty much everywhere in the environment. Everyone breathes in aspergillus spores, but your immune system easily deals with it. It's pretty much impossible to avoid. It's even in some foods and spices. But if your immune system is gone, then it's a different story. Now that I'm seeing what happens without an immune system, it's pretty scary, especially after reading about all the different infections I can expect to get after my bone marrow transplant. We're going to have to be so, so careful, even up to 3 months after the transplant. I count myself pretty lucky to have gone with such a poor immune system for so long with only that nasty ear infection.

So I'll be on more antibiotics (I'm on 3 right now) if it does turn out to be aspergillosis. Hopefully the antibiotics, along with my recovering immune system, will wipe it out. The tricky thing is that it has to be 100% gone before I go into a transplant or it can be fatal. Seriously. The fungus can spread to all organs of your body, including your brain. Sounds like an episode on House. But the good news is that I only had a low-grade fever last night and I haven't had a fever all day today. So hopefully I'm already on the mend. But keep your fingers crossed.

In other news, my platelets are now at 186!!! This is in the *normal* range folks. I've been as low as 6, so this is awesome. I can already tell the difference in the amount of time it takes for a needle poke to stop bleeding. It could take 10 to 20 minutes, now it's less than a minute sometimes. Cool!

Oh, and they removed my PICC line to rule out any infections, which is sort of cool, except that now they have to run IV fluids through a peripheral line, and I've gone through 3 in the last 2 days since they tend to clot easily (especially with all my platelets). Ugh. I kind of miss my PICC line. I had it for 2 months.

That's it for now. If all goes well I'll be going home on Monday. Can't wait.

Here's a picture of my latest digs:

Back in the hospital, again, or again again.

2008-11-20T17:46:00.000-08:00

This is Johanna, just thought I'd give a little update until Steve feels up to it. Steve had an exhausting day. He was running a fever last night, and the night before also, but it was not terribly concerning until this morning when it hit 102.3. I spent a while debating with Steve about paging the doctor, but we waited since he was due to see him this morning anyway. This is where it gets interesting (not for me since I was just at work!). His parents took him to his appointment and they were concerned about his fever of course and sent him for a chest x-ray to look again for pneumonia. Steve says he had to ask the x-ray technician if he could sit down and rest. He had to stand for the x-ray and apparently he fainted at this point and woke up at the floor. Kudos to the x-ray tech who apparently eased his transition from standing to lying on the floor and bringing him a pillow. They got the necessary x-rays and went back to the oncologist. The oncologist sent him to see the infectious disease doc upstairs who pulled out his picc line to rule it out as a source of infection. (yay! I was worried that this was causing something but still we can't be sure). Then back to the oncologist who admitted him to swedish again. (new room again- hopefully we won't try out the whole floor!)

On a side note, we are all very pleased to see Steve's platelets almost at a normal (non-cancer) level! His other counts are approaching normal at various degrees of speed. This is to say that although Steve isn't feeling great, his body is doing a tremendous job at recovery even while battling a fever.

We just ordered our dinner and I'm hoping Steve is up for another episode of Lost.

New hat!

2008-11-18T21:59:00.001-08:00

Check out this cool hat my friend, Vanesa, knitted for me last week. How awesome is that? And I just got it in the mail today, perfect timing! It fits perfectly and covers my bald head nicely. Johanna says it's super cute. I like it a lot :)

Back home (again) after pneumonia scare

2008-11-18T16:11:00.000-08:00

So I had a blog post all lined up to talk about how great it was to be at home again (I was discharged last Friday), but I came down with a fever on Sunday night and a pretty bad case of the chills, so we paged my oncologist and he sent us to the emergency room. After a bunch of tests and x-rays they thought they saw some pneumonia, so it was back for another stay in the hospital. Ugh. We got to the emergency room at midnight, and since my temperature had returned to normal shortly after arriving we figured that we'd be turning around and heading home. But protocol dictates that they run all their tests so by the time we got the results for the blood tests and x-rays, it was about 2:30 in the morning. Finally the E.R. doctor comes in and says she thinks she sees some pneumonia on the x-rays. Scary stuff, even when you're healthy. So the E.R. doctor called my oncologist and they decide to put me back in the hospital. Then we have to wait for a room to open upstairs, so by the time we get into my actual room it's 5:30 in the morning. And since they thought it was pneumonia, they weren't quite willing to let me go home the next day. So another 2 nights in the hospital it was, and man, I was really ready to be out of there this time. But I'm home now! Hooray!

So in total I've spent 15 days in the hospital (a week in the hospital for induction chemo, then a week recovering at home, then another week in the hospital, then a weekend at home, then another 2 days in the hospital). Being in the hospital is really miserable most of the time. If you're feeling well, they don't want you there! So you're only there when you feel like crap. You're also away from home, hooked up to an IV pole 24 hours a day, and woken up at all hours of the night, just to mention a few of the annoying things. Hopefully the 3rd time's a charm for being released this time.

But being home is great! The first thing you notice after leaving the hospital is how nice it is to wear street clothes again, and how refreshing it is to see *normal* people on the streets doing *normal* things. Even just being outside and smelling the crisp, fall air is uplifting.

Oh, and did I mention that at the hospital I also had to pee in a bottle *every* time I went to the bathroom, so that they could record it on my Input/Output chart? How annoying is that? And since I was on so much fluid from the IV drip, I was peeing at least every 2 hours, all through the night. So peeing in a bottle when you're super tired at 2 a.m. after maneuvering your IV pole into the bathroom, then recording the amount on the chart in the dark, and doing this all while feeling tired and sick and miserable is really a testament to how demoralizing all of it can be. I just thought I'd mention this, since it's pretty nice to be able to use the bathroom like a normal person again :)

Anyway, we spent last weekend walking around outside to help get my strength back (I've now lost 16 pounds since starting the induction chemo), doing chores around the house, making dinner, watching a lot of TV, and just chilling out on the couch. Still not having a huge amount of luck getting normal food down since it makes me nauseous sometimes just thinking about food, but it's getting better by the day. Today was a big milestone: I had my first slice of pizza! I haven't had pizza in 3 weeks. Things are steadily improving.

Other good news: my liver problems seem to have gone away (hooray), and my white blood counts are steadily increasing (woohoo!). As an example, just a week ago my neutrophil count was at 0.00, then it slowly started rising: 0.01 one day, then 0.03 the next, then 0.07. Yesterday they were at 0.4 and today they're almost at 1.0! A normal neutrophil count is above 2.0, so I'm halfway there. Keep your fingers crossed that they keep going up. Having more neutrophils will help a lot in battling the constant fevers and infections I keep getting.

Oh, and I'm still on the nutrition IV drip, even at home. The home health care nurse delivered 2 huge boxes of supplies which we had to buy a small cart to hold it all. Including are things like saline flushes for my PICC line, gloves, alcohol wipes, syringes, vials, and all kinds of other stuff you'd normally only find in a hospital. We even have one of those red BIOHAZARD boxes that you use to throw away sharp needles and other stuff. Also included was a cooler full of IV bags that contains all my nutrients, vitamins, and fats, and a small IV pump for my infusion. So basically at 9pm every night, we flush my PICC line, inject various vitamins and minerals into the nutrition bag, then Johanna plugs me into the pump with the IV bag attached. It's kind of cool, since it's way quieter than the pumps at the hospital (they whir and click all night), and the portable pump even comes with a backpack that can hold both the IV bag and the pump. This way I can walk around the house or even go outside without it being too big of a deal. It's a 12 hour drip, so I have to sleep with it overnight, but I've been hooked up to the IV for so long it's not even that big of a deal. And it's reassuring to know that I'm still getting nutrients even if I can't eat much. Hopefully we'll be able to wean me off of it by the end of the week.

That's it for now, here are some pictures from the last few days:

Johanna and I at Stumptown. The coffee was too much for my poor stomach though :(

So nice to see our beautiful backyard again

Our cart full o' hospital stuff

Nurse JoJo

The IV pump and a bag full of food (yum)

Plugging me in

I'm mobile!

Lots of bald-headedness!

2008-11-13T00:19:00.000-08:00

Wow, my friends rock. This morning 3 of my friends, Farookh, Simon and Eugene (pictured at left), went down to Acme Barbershop and asked to get their heads shaved -- on purpose! They did this in support of me, and I think that's just plain awesome. In fact, they managed to pull off some pretty sexy new looks in the process. I'll post a picture of me later showing my new bald head as well, but don't expect anything sexy like these guys. Especially since mine will be in a hospital robe, bleh.

Speaking of hospitals, I'm still in the hospital but we've managed to get a handle on my fever so I might be going home as soon as tomorrow. Hooray! The biggest fear for me is that I won't be able to get 3 meals a day down at home, since I am still suffering from mouth ulcers, and also because it's hard to keep simple foods down due to my messed up intestinal tract. At the hospital I am on this fancy TPN (total parenteral nutrition) IV drip that supplies me with 2,500 calories per day of protein, lipids (fats), vitamins and minerals, basically I don't need to eat solid food at all. It's been a total life-saver since while I was recovering at home last week I would stress out at each meal just trying to figure out what to eat and how to keep it down. Lately I haven't had to worry about that which has been a huge relief, though I have been trying to eat a little bit of food each day so that I can ease myself back into solid foods, even though it's a bit of a struggle.

The other issue is that they've discovered some liver problems, including jaundice (my eyes are slightly yellow), all of which are likely a result of the high-dose chemotherapy. Hopefully this is something that goes away by itself, but they're monitoring it closely to see what happens next. Kind of a bummer to start having problems in a separate part of my body, but liver issues aren't totally unexpected. It could also have been caused by the anti-cholesterol drugs I was taking during the chemo, which was part of a clinical study that showed that taking this particular drug helped give patients a better response to the chemotherapy, even for people that don't have high cholesterol. But the dose I had to take was pretty high (16 pills a day) and so I basically ended up taking a 45-day supply of cholesterol drugs in just 3 days. But the doctors are good and are on top of things, and hopefully it will just go away by itself.

Also, I was blown away by all the comments you guys have been posting recently. I've been feeling pretty down the last few days and all your comments have really helped cheer me up. Thanks! I have some future blog posts lined up to answer some of your questions too :)

Here are some pictures of the fun my friends head while getting their heads shaved :)

Simon, looking a little like Dr. Evil

Eugene -- Russian mobster look?

Farookh, sporting that Neel Kashkari look. Very smart and sexy.

Too much fun! You guys rock!

Last days of hair for stever

2008-11-09T22:13:00.000-08:00

Well, it looks like this will be the last you see of me with hair for a while. Woohoo! Not like I have a lot to begin with. Oh and Johanna wanted to take a picture showing how much I've improved since that awful picture of me from a week ago. Wow.

So while I was vacantly pulling on my sideburn hairs this afternoon I found myself holding onto a small bunch of them. I tried a few other spots and sure enough, the hair came out with little resistance. I was wondering when this would happen. I'd been pulling on them every few days just to check. I should have suspected something in the last few days since I haven't shaved in several days and I look like I only have a day's worth of beard. At least that will be one advantage during this. No need to shave!

Now the trick will be to shave it all off before it really starts falling out. I don't want to wake up one morning with hair all in my bed. Oh, and some hairs come out while others don't. For example, my chest hair comes out, but my arm and leg hairs don't. It will be interesting to see what I look like next week.

By the way, I just wanted to let you guys know that I read every single comment you guys post on my blog, even if I don't respond. I get an email each time a new comment appears, so you can be sure I never miss any. You guys have been super supportive so far and it makes my day when I get that email announcing someone has commented on my blog. It's also probably the easiest way to show your support, which is something I get asked about occasionally since it's not really feasible to have everyone visit me in the hospital or at home with my immune system so low.

So if you want to let me know that you're thinking about me, send me an email or just comment on my blog! It really does make my day. Ciao for now.

Stever Fever 102.3 FM

2008-11-09T14:11:00.000-08:00

Well, I'm back in the hospital again. I've had a fever of exactly 102.3 for a few days now, so I feel like it should be my new radio station or something. We checked in last Friday after I had a fever of 103 at home. We even got a pretty swanky room at the hospital this time. The doctor from the Center for Infectious Diseases and Control (cool title) has been running cultures of my blood to see exactly what I'm infected with that's causing the fever.

See, I have absolutely no immune system right now. My white blood cells are pretty much all gone, which means I have no neutrophils, no lymphocytes, no nothing. At least before when I would complain about my neutrophils being low (like 0.2), at least I had *some* neutrophils, and there were at least a few of each of the other types of white blood cells floating around in there as well. But the induction chemo wiped them all out, and until my counts return in a few weeks, I've got nada, zero, zilch. So the doctors pretty much assume you'll get infected with something. I think they just send you home after the induction chemo until you report back with a fever. And I'm not even infected with something external. For example they think I one of my own intestinal bugs is running wild. So they've been treating me with different antibiotics until they know exactly which bug it is.

Being in the hospital used to seem like it might be fun, especially during recovery, since it seemed like there would be a lot of time for personal stuff like reading and watching movies and playing on the computer. I mean, how hard can it be to recover? But you feel like crap so much of the time or nauseous or just plain tired that it doesn't make anything seem very fun at all. Plus, nurses and doctors and technicians and all kinds of other people are constantly coming into your room at all hours of the day and night, so it's hard to even get a few hours of sleep without getting interrupted. For example, every morning at 4:30am someone comes in to draw blood. This isn't so big of a deal with the PICC line, but then at 5am someone else comes in to check my vital signs (blood pressure, temperature, etc). Then at 7am I may hear the alarm on my IV pole beeping (I'm hooked up to the IV pole 24 hours a day for the antibiotics drip and food nutrients), so I have to hit my little nurse button to call someone in to have them see whatever's beeping, which could have been me rolling over on one of the tubes hanging out of my arm, or one of the antibiotics bag going empty, or some other random thing. (In fact, no kidding, while I was writing this paragraph the nurse came into do another blood draw).

But I complain a lot, because it does make me feel good knowing they're actively trying to figure out what's giving me this infection and they seem pretty confident that once they know, they'll have the right antibiotics to kill it. Btw, while I was writing *this* paragraph, the nurse added a new bag of antibiotics to try out on me. I'm also hooked up to the total nutrition diet thing, so technically I don't have to eat which is actually a big relief, since eating is still a major obstacle right now with my mouth and throat and intestinal tract still all wonky. I do crave being able to eat a pizza, or a big cheeseburger or Thai food or a big bowl of Pho, but for now I'm happy to not have to worry about it since the thought of it makes me sick.

I'm also a little bummed since next Wednesday was supposed to be my transplant date before I got sidetracked with all this induction chemo crap. It basically means that I'll be doing this all over again for the transplant in another 6 weeks. So I guess I know what I have to look forward to. But I was kind of hoping to being on the road to recovery for real by next week. Oh well. it will get here soon enough.

over and out,
stever

View from my room

Hotel d' Swedish

2008-11-07T22:35:00.000-08:00

This is Johanna. Steve is once again enjoying a stay at swedish hospital. He checked in today due to our week long battle trying to keep his fever down. After subsisting on less than 500 calories of carnation instant breakfast we were hoping to get some better medicine for his mouth pain so he could eat, but due to the fever, being in the hospital and getting Total Protein Nutrition (TPN) is a better solution. The TPN looks like a big bag of lemon-lime gatorade and I hear he'll get lipids (fat) in the morning.
Steve's room is almost luxury by hospital standards. It's about like a studio apt. He has a huge window view of downtown, mostly facing the port of seattle. His TV and DVD player are in an armoire. There's a love-seat with a fold out bed in it. It's pretty sweet. Had there been more advanced warning of his "vacation" I would have packed our movies- but I'll just bring them tomorrow.
At some points during the day he says he feels great, and at other points he says he feels terrible. He's fairly sharp mentally and is starting to return to his normal self in asking the doctors more questions about the drugs he's being given. He doesn't yet have much energy for conversation and is hardly using his phone (but if the text message goes off I typically read it to him).
On a lighter note I finally got to try the chocolate cake in the cafeteria that Steve recommended from his room service. It was really great all around. I'm glad it's the weekend so I can spend more time with him and hopefully see his improvement!