Avi's Lymphoma

Well, it will not be quite like the Beatles famous song, but I will describe our day in the life at MSK last Friday. And, as I just got a new permission, one more translation. We knew it would be a hectic day - appointments started at 7:30am and ended at at 5pm, with hardly a breathing (or eating) space in the middle. Further, they were at several different MSK buildings in the upper east side of Manhattan, some 20 blocks and 5 avenues apart, to add more spice. So, we spent Thursday night with a friend, and left really early to be on time. Naturally, we went to the 74th and York Ave. location, only to discover that we should be at 53rd and 3rd Av.e But this was our only mistake that day. Plenty of cabs and walks between them. First was the neurologist. This appointment was set up a few weeks ago, when my neuropathy symptoms were much worse. I hoped to get more treatment ideas regarding my neuropathy, or at least prediction of the future. But as Edna predicted, we gained nothing –...

I have probably mentioned already that the first “milestone” (whatever it means) after transplant is the +100 day. I guess most serious problems (including death) happen in that period. Also,   around that time they perform the 2nd bone marrow biopsy, mainly to look for signs of the cancer returning, and of course for the performance of the new marrow. I had mine last week. Well, the major news, which we got yesterday (I was waiting for it before writing this post) is the preliminary report, which says that they found no sign of cancer. The next bone marrow biopsy is 6 months after transplant, and the one after it is a year after transplant.  Otherwise, the skin and neuropathic problems I wrote about last time continue to disturb my sleep (and waking) hours. But it seems that the new lotions and medications, partly through experimentation with doses and combinations, are starting to help. We'll see how far it gets. The picture today demonstrates one record broken ...

It is probably impossible to predict what will become “routine” for us, but clearly, we are not there yet. It seems that now our number of MSK visits increased, with the symptoms I described last time (neuropathy, rashes and swelling in my feet and ankles). This coming week we will spend 3 days, visiting various MSK facilities to see a physiotherapist, lymphedema expert (both for the swelling), and dermatologist (for the rash). Also, I’ll have the 3-months post-transplant bone-marrow biopsy, to search again for any sign of cancer, and more generally see how the new immune system is doing. We spend a lot of time on the road, and while being excellent quality time, we sure hope that we’ll need to drive for far less for such purposes relatively soon. If you are wondering, I can drive perfectly by myself, but Edna prefers to come to all these meetings and hear herself what all these experts are saying, plus is still worried something might to me which will require her presence – the i...