I met with the doctor yesterday, and things are going as well as could be hoped. I am continuing to taper off one of the immune suppressants, and was put on penicillin as a prophylactic antibiotic. I mentioned that while I can see that I am improving week to week, it seems my progress is slow. On any given day I still experience some pain, nausea and almost always severe fatigue. He reminded me that this is a long process, and that my body is working hard.
This was driven home to me when I was weighed and discovered that I have not gained a single pound since I left the hospital. I feel like I have been eating non-stop, and I have not been skimping on the fat. I have gone through a pound of ghee, eat handfulls of nuts, lay on the butter, and spread cream cheese a quarter-inch deep on my bagels. Bowls of beans and plates of starches. I often get up at night because I am hungry and eat a cup of cottage cheese and make a sandwich. or two. or three. If I had been eating this way last year at this time I would have gained several pounds despite playing ultimate frisbee and working in the woods in the cold. And despite the fact that I am still sleeping, or at least resting for 12- 14 hours a day, I have burned off all these calories.
It is hard to believe that my body is working harder at a cellular level than I ever work it when I am healthy, but that seems to be true. At least it explains why I am so tired all the time. I am not really sure what it is doing, now that it has reached full chimerism, but whatever it is doing, it is working hard at it. When I was told that recovery takes 8 months or so before you even start to work on rebuilding the lost muscle I was pretty skeptical, but now that it is getting towards 2 months for me, and I see the glacial rate that I am improving, I realize that it is going to be a longer haul than I had hoped.
So day 50 is halfway, but halfway to what? I wish it was halfway to my recovery, but alas, no. It is halfway through my dangerous recovery period - the period when relapse, infection and host vs donor disease is the most likely. If my last bone marrow biopsy (on day 90) comes out well, then I will be transitioning from weekly visits to monthly visits around day 100. Becky and I will be able to move back to Maine, where we will be moving in with my mother for several months. I am looking forward to that, as is Becky. Having someone else help with my caregiving will be nice for her.
This was driven home to me when I was weighed and discovered that I have not gained a single pound since I left the hospital. I feel like I have been eating non-stop, and I have not been skimping on the fat. I have gone through a pound of ghee, eat handfulls of nuts, lay on the butter, and spread cream cheese a quarter-inch deep on my bagels. Bowls of beans and plates of starches. I often get up at night because I am hungry and eat a cup of cottage cheese and make a sandwich. or two. or three. If I had been eating this way last year at this time I would have gained several pounds despite playing ultimate frisbee and working in the woods in the cold. And despite the fact that I am still sleeping, or at least resting for 12- 14 hours a day, I have burned off all these calories.
It is hard to believe that my body is working harder at a cellular level than I ever work it when I am healthy, but that seems to be true. At least it explains why I am so tired all the time. I am not really sure what it is doing, now that it has reached full chimerism, but whatever it is doing, it is working hard at it. When I was told that recovery takes 8 months or so before you even start to work on rebuilding the lost muscle I was pretty skeptical, but now that it is getting towards 2 months for me, and I see the glacial rate that I am improving, I realize that it is going to be a longer haul than I had hoped.
So day 50 is halfway, but halfway to what? I wish it was halfway to my recovery, but alas, no. It is halfway through my dangerous recovery period - the period when relapse, infection and host vs donor disease is the most likely. If my last bone marrow biopsy (on day 90) comes out well, then I will be transitioning from weekly visits to monthly visits around day 100. Becky and I will be able to move back to Maine, where we will be moving in with my mother for several months. I am looking forward to that, as is Becky. Having someone else help with my caregiving will be nice for her.
Wow, wow, and more wows. Happy half-way through the dangerous 100-days post transplant. Happy surviving what only one other person has survived. Happy hard-working body (go body!). Happy Easter. Happy Spring. Happy nordic track. Happy lessened nausea. Happy increasing energy (albeit slowly increasing). Hugs, hugs, and more hugs. Love, Mitch
ReplyDeleteWhat Mitch said. ;)
ReplyDeleteSeriously, this is great news, Leif! Keep at the eating and the resting. It sounds like that's what your body needs right now!
I am so impressed. This is uncharted territory. Your body is undergoing not just an enormous healing process, but a complete transformation from the transplant - like your getting a new hard drive and it's taking months to download everything onto it in a whole new language ( or something). May you run with it!! Or just eat and sleep for now...the fuel supply required for this process is undoubtedly huge.
ReplyDeleteLeif, I am so very happy to hear that you have reached full chimerism! I think of you everyday and send you and Becky lots of love and light. Big Hug! - Diantha
ReplyDelete