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.