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.

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.

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 :(.

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.

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.

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!

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.

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!

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

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)

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

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)

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

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

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

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 :)