The two most dreadful words I could possibly hear right now: graft rejection. That seems to be what’s happening according to my counts and chimerism percentages. My last post was written when I stopped all of my immunosuppressant medications with the hopes that the donor cells would be allowed to grow and begin flourishing, keeping an eye out for GVHD. That was about 10 days ago. Since then, my counts have continued in their descent. Thankfully, not to a dangerous range, but still trending downwards. Frustrating.
I saw my doctor today and he leveled with me. It appears that the graft is not holding in my marrow. My immune system, despite having blasting it with a pretty strong immunosuppressive chemo regiment pre-transplant, is attacking the donor cells as well. Basically, my body ain’t got no time for no one.
So, what’s the course of action? My doctor said that we’re going to hurry up and do nothing. So, more waiting. The plan is as follows:
Min’s sAA Post-Transplant Treatment Plan, v3.0
1. Track my blood counts and donor chimerism percentage for a few weeks and see if they stabilize; ‘they’ being my counts. If this happens, then no other major course of action needs to be taken except monitoring my counts, until I die, and treating as necessary (e.g. blood transfusion, platelet transfusion, neupogen, etc.)
2. If my counts never stabilize and continue to drop, we’ll check to see if my body has developed antibodies against my donor’s blood.
2A. If I don’t have antibodies against my donor, we’ll try a stem cell transplant and see if that helps.
2B. If I do have antibodies against my donor or the stem cell transplant doesn’t help, we’ll have to find a new donor and re-attempt the marrow transplant. The chances of having a successful graft on the second try is low, but it’s better than doing nothing. Additionally with the second transplant, I will have to undergo full body irradiation in addition to the chemo regiment pre-transplant to ensure that everything single effing cell is obliterated and we start from scratch.
Needless to say, I’m upset about all of this. Particularly, I’m pissed. Mainly because I expected, wished, hoped that the transplant and this recovery period would be the extent of my treatment; all would go well; and I’d be back to my “normal” life come the fall. Now, it doesn’t seem like that’s even a possibility anymore. I’m so irritated with my body and how stubborn it’s being, rejecting both my old and new immune systems. I’m frustrated about the prospect of this physically, emotionally, spiritually, and fiscally draining process dragging on for many, many, many more months. I’m tired of having nothing but concerning and discouraging news to tell my friends and family who all just want me to get better. When will this end?
Despite all of the not-so-great news and boat loads of emotions, my friends have really stepped up and have been nothing but supportive. From brunches to coffee dates; homemade pasta dinners, full casseroles, and simply vegging and watching movies; house sitting, rides to my appointments, and feeding my addiction to froyo, they’ve been there. I’m so, so humbled by everyone’s willingness to listen, to comfort, to just be there during a time of great need. Giving without expecting anything in return, being a firm hand of support when I stumble. I’ve been blessed with more than I know what to do with and the only thing I can offer is humble, tear-filled thank you. I love you guys.
A few pretty pictures I’ve managed to snap over the past week. I should do better about snagging more.
The view from Graham’s dining room window. Stunning at sunset.
Helen Putnam Regional Park for a midday picnic.
Coffee and donuts with Kayla at Crissy Field Beach. The Golden Gate never gets old. srsly.