Avi's Lymphoma

As news gets better, the rate of posts in this blog will naturally go down. Please feel free to send us e-mails whenever you feel like.   So, what’s new? We had another day of visits to MSK in Manhattan yesterday. As usual we went on Thursday evening to feast and stay with other friends of ours, this time in Long Island City (hence the Manhattan view from the East in the picture). So, for the first time we took the East River Ferry (in one direction), and walked to Queensboro bridge (in the other). Even though the main purpose is medical, these bi-weekly trips are certainly great social events. One visit was with my dermatologist. Since my skin improved so much (the various creams, possibly also correlated with the reduction of swelling in my feet and improvement in my neuropathic issues) , she “fired” me as well. It seems that I am done with all specialists, for now at least! Which brings us to my transplant doctor, who I will continue seeing for a while. This mee...

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...

Another week at home passed by. And just as it started, we got a taste of what my doctor predicted, namely that GVHD will start to manifest itself one way or another. He was even more specific, saying that rejection symptoms typically start around the 3 rd   month after transplant, and that usually the new immune system attacks the skin, the mouth or the digestion system. For me, it was the first two. I have developed some sores on my gums and tongue, and over the past weekend developed a rash in many parts, especially hands and feet. The combination of these, some quite painful, with the neuropathic pains, gave me a few sleep deprived nights. Describing these in e-mail to my doctor (they are very good with reading and responding to messages!) caused him to call me for inspection in NY.   Well, medicine does have solutions to some problems (certainly the transplant itself is a huge example): a combination of a new neuropathic medication prescribed by a pain doctor (MSK has...

A week at home passed quickly, and we are getting back into the old routine. Edna is back to work (she never stopped working in NY, but now she is actually going to work). I went to IAS only one day this week, just in time to see the geese who visit every year to poop all over the Institute’s lawns. Then I realized (and this was stressed in an IAS-wide e-mail) that the flu virus is very active there (as everywhere else), quite a few people were sick and I had better stay away. Some of my group members came to visit me at home, one at a time, and sitting at safe distance. I plan to continue going, but not too often, mainly on seminar days, until it is safer. Edna and I had friends at home, went to a restaurant once, and of course visited our favorite Small World Coffee in town, which we missed dearly, a few times when it is not too crowded. The balance between avoiding infection and just living has to be maintained somehow – I hope I don’t catch anything! The medical visits natu...

Thanks to Tal and Yaeli who carried, drove, carried some more! Thanks for all the balloons, welcome home decorations, and good wishes. It's good to be home!