After spending a very long day in Houston yesterday, it was with great reluctance that I rolled out of bed this morning a little before 8. Yesterday was the 10 month anniversary of my second transplant and I suspect that I should have seen my transplant doctor a month ago for this particular checkup, since they like to do things in multiples of three. Somewhere along the line the time table got shifted and things got a little confused, but we should be back on track by the one year mark.
My bloodwork was a little down from last month's visit with my local oncologist, but still considered good. When I say it was a little down, I mean it in the strictest sense. It literally was only a hundredth or thousandth of a decimal point off. The only change was in my liver function. The numbers are on the rise, again.
While discussing this with my transplant doctor, it occurred to me that she was dealing with the issue on the fly. We've discussed possible reasons for my liver numbers in the past, including GvHD and damage due to medications. I've had my liver biopsied in the past, and the conclusion was that there was no GvHD present. As for damage being done to the organ due to medications, I can believe it. The inserts that come with the medications that I'm currently on read like a medical dictionary. There's also the possibility that I've had one too many blood transfusions and my liver is retaining too much iron which can contribute to what's presently happening.
As I sat on the examining table swinging my legs, I listened to Dr. K. reason out what we should do. It's during these moments that she reminds me most of a dragonfly flitting from one leaf to another looking for that perfect perch. Ultimately, she decided that we'll stay the current course with a minor adjustment in my Prograf dose. My bloodwork showed that the amount circulating in my body is half what it normally is, so I need to start taking 1mg a day instead of 0.5mg.
Dr. K. expressed concerns about increasing my Prograf citing the super aggressive nature of my brand of leukemia. I wonder if I'm oblivious to the gravity of my situation when we have these discussions. My mindset is business as usual; nothing to be done, but live my life. I wonder if I should be anxious or more concerned since Dr. K. always reverts to reassuring me in these moments. I know that the more suppressed my immune system is, the more likely a chance of relapse, just as I know that standing in the middle of the street during rush hour might win you a trip to the ER. Relapse is a very real concern to me, but at the moment it's so abstract that I can't muster the appropriate amount of anxiety. I feel well. I look well. I must be well.
It's my doctor's job to outline worst case scenarios. She does a great job of balancing the scales. I'm ten months out with no leukemia. Studies have shown that the likelihood of relapse is greatest within 6 months of transplant regarding my form of leukemia, especially with a second transplant. My first milestone is the one year mark. The second is two years.
In regard to my misbehaving liver, Dr. K. presented a third option. There may be a small smouldering case of GvHD fulminating. If my LFT's drop with the increase in Prograf, she'll have her answer. If the numbers continue to be elevated, or increase, then she's going to take me off of my anti-fungal. She mentioned changing it yet again, but when she uttered the word itraconazole, I put my foot down. Okay, I made a horrible face, but she got the point and took it off of the table. She mentioned cancidas and I reminded her that it's an IV drug and I no longer have a catheter. The plan is to take me off of an anti-fungal if the numbers continue to do what they're doing. I'd be off for a month and if there's improvement, then we'd go from there.
As for my present GvHD issues, the team is going to treat it like it's eczema. I'll keep doing what I'm doing to keep it under control. Since my scalp is super flaky I asked to get a topical steroid prescribed to help with what looks like unsightly dandruff. Dr. K. agreed to put me back on the medication I applied after the first transplant caused scalp issues. As for my apparent lack of hair, she reiterated that the chemo I received was responsible and reassured me that it would come back. After ten months of seeing my pink scalp through fuzz, I'm not as sure.
It was a good visit and I'll be following up with my local oncologist in a month. Then it's back to Houston in September for my one year. There will be a bone density scan and a bone marrow biopsy to look forward to. I think I'll sit around in my pajamas and do nothing more strenuous than balance my checkbook today. Etsuko is trying to crawl into my lap as I type, so I assume we're friends once more.