Tuesday, June 9, 2009

Tributes to Steve

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.

Saturday, June 6, 2009

A Celebration of Steve's Life

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.

Friday, June 5, 2009

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

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.

Thursday, June 4, 2009

double cross your fingers for steve

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.

Wednesday, June 3, 2009

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

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

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.

Monday, June 1, 2009

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

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.

Friday, May 29, 2009

Day +122 - Outlook not so good

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.

Thursday, May 28, 2009

guest post: growth factors

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.

Wednesday, May 27, 2009

Day +120 - Unexpected drop in blood counts

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 :(.

Saturday, May 9, 2009

Day +102 - New blood type!

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.

Tuesday, April 28, 2009

Day +91 - I'm a girl!

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.

Tuesday, April 21, 2009

Day +84 - Biopsy results are good!

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!

Wednesday, April 15, 2009

Day +78 - Feeling great!

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.

Tuesday, April 14, 2009

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

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!