After transplant, at around 138 pounds. One helluva diet!
My Transplant recovery is going ok but slowly. In our meeting with the Transplant Team last week, they reviewed my latest lab work and are pleased with my immune system recovery. Not back to normal, but getting there slowly. I am still stuck at home, and leave the house only for medical appointments. We’re not sure yet how we’ll handle Thanksgiving with family (for two reasons: lots of people and the smell/sight of food) but hope that by Christmas things will be back to normal.
SIDE EFFECTS
– still have the pain in my feet (numbness/tingling). This is a lingering side effect from my original chemo last summer. I have spoken to another transplant patient who said it took a full year before the neuropathy in her feet disappeared. My sister Laura loaned me a “foot massage platform” that offers wonderful temporarily relief (I use it daily) but the real problem is at night when you try to fall asleep and your feet are hurting.
– the bladder/prostrate issue. I have to insert a catheter each time I need to pee (ugh!) The Transplant docs and the Urology docs tell us that this is NOT a side effect and there is no relationship between chemo and this urinary problem, but the fact that my bladder stopped working within hours of my transplant seems like way too much of a coincidence to me. I went to UofM Urology for “diagnostic tests” (you don’t want to know the details…) last week and the doc says that all neurologic and physiologic results appear normal. The good news: no additional surgery is required. The bad news: we are in a wait-and-see mode with another 3 months of self-cath’ing to see if this problem goes away by itself.
– weight loss. Following Transplant, I lost an average 1/2 pound a day for over a month. My Transplant admission weight was 154; my bottom-out weight last Tuesday was 137. The Transplant doc changed my meds last week – eliminating 4 pills I was taking. Since then I have managed to stabilize, and regain, just a little weight.
Irene and I suspect that somewhere in the med list was a nausea-inducing drug that kept me from wanting to eat. Since the med changes, my weight loss stopped and I think I have even gained between 1/2 and 1 pound. Irene’s been a tremendous help here, because up until this weekend I could not tolerate being in the kitchen when food was prepared (food smells and sights send me into a nausea/vomiting fit). She returned to work part-time (mornings only, so she could be home and pump lunch into me) last Monday and she will spend another week on 1/2 days and then go full time the following week. We hope that I will be self-sufficient in the dietary department in another week.
– my general disposition and “chemo brain”. When someone asks me “how are you feeling?”, my first response is to say that I am not in any pain (not taking any pain-related medications), but the second response is to try and describe how weird it feels to be unable to focus and concentrate on a given topic for a long time, or when trying to get enthusiastic about some activity (like reading, like getting on my ham radio, working on the genealogy web site, or playing computer games… things that I previously enjoyed a lot and could spend hours pursuing). The nurses had warned us about this thing they called chemo brain, more to avoid my getting depressed when I didn’t seem to want to do anything, or when previous hobbies did not interest me. This seems to be getting better (s-l-o-w-l-y) but has real implications as I consider returning to work next year and trying to deliver at the same energy level and with as much focus as before. There’s not much medicine can do for me on this problem… but I sure do find myself saying “I’d like the old me back, please.”
NEXT STEPS
Irene and I meet with the original Myeloma Chemo Team (Dr. J and his assistant Tara) to review my progress and begin discussions of future action.
On December 5th I return to UofM for a Bone Marrow Biopsy. The results of the biopsy will shape the decision on the next Transplant: do another Transplant immediately or wait? Use my own stem cells again or those a sibling donor? Stay tuned…
-larry