Avi's Lymphoma

It's getting closer... Today should be very similar to yesterday – a very long and slow infusion of a medicine which is supposed to help protect Avi against GVHD (graft-vs-host-disease), as well as some other meds and a bag of chemo. Yesterday was uneventful so we are hoping for more of the same. Otherwise we seem to have fallen into a routine – we have our favorite café (discovered it yesterday – exactly across from the apartment. It is so small we missed it before but Eyal and I loved the coffee we had there – which is not to be taken for granted in NY), favorite supermarket, Eyal's favorite wine store etc... The weather is cold but unless it's very windy we all enjoy our walks -– to and from the hospital and the occasional afternoon stroll. Avi will be admitted to the hospital tomorrow and if all goes well he will be released on Friday, carrying the donor cells in his veins (they will be infused on Tuesday – day 0). And then a long period when the cells have to be ...

Just a short post, as nothing much is happening (well, a lot is, mainly a massive slaughter of my immune system cells, which I can only witness indirectly). The way transplant centers operate, everything is centered on Day 0, the day of the actual transplant. Today is Day -4. Two days ago I started getting the chemo (plus tons of other medications). It is a different mix every day. So on Wednesday we were here 8am-7pm, while yesterday we were released already at noontime. Hopefully today will be short as well. Edna, Eyal and I settled into a routine here in NY. Wake up, go to the hospital for my treatment, and then return home and pass the time. It is certainly nice to eat home cooked food most of the time! As this chemo hit me hard from the beginning, I am quite tired during the day, and we don’t go out much (I am allowed to walk on the streets, but not sit in crowded areas). I do try to walk whenever I have the energy, and hope this will persist as chemo progresses. It is a nice ...

We are in the middle of a long day checked in officially to the Red Team. Memorial Sloan Kettering (aka Sloan, aka MSK) is huge and spreads over many buildings on the Upper East Side (and also in many other locations, in NY, NJ and probably elsewhere). So although we had spent many hours over the last 2 years on Floor 4 of the MSK Haupt Pavilion 1 , we had never seen Suite 6 before, but this is where we'll spend many hours a day from now on. Basically it is a beehive of 8 small rooms and many many nurses, nurse aides, nurse practitioners, an attending physician and more people we have not been introduced to yet. The ones we have met seemed all lovely, very knowledgable and very kind. Between patiently answering all our questions, they assessed Avi, went over his story very carefully, asked many questions about his current health and started a bunch of meds and in particular the first 2 chemos. He needs a lot of hydration with one of the chemos (he's getting this particular one ...

Yes, the big day has come! We moved to NY today for (at least) 4 months – the  picture shows the entrance to our new residence. We have a very nice, very spacious 2-bedroom apartment!  So now I want to discuss in some detail the schedule of events for this transplant, and one big decision we had to take regarding it.  If you read about a bone marrow transplant (BMT) (sometimes called stem cell transplant), your first reaction is that it is hard to imagine that anything like this will work. There are many good Internet sites describing it in detail (mine is “allogeneic”, namely from an external donor). Here is an extremely abbreviated description of the  “ critical’’, first 20—25 days, which are named so that “day 0” is the one in which the transplant is given. Starting roughly from day -10 to day -1, you get “conditioning”. This means as main course a very aggressive chemo, concluding with a dessert of radiation. All this is supposed to completel...

I am not sure this post is of value to anyone but me, when I read this blog again in a few years… there are poems translations at the end for anyone who wants to skip.   As next week I will go into my hopefully final (pre-transplant) chemotherapy, this post is about chemo. More specifically, it is about the many  “ minor ”  side effects of chemotherapy I experienced. I say minor, since by far the major ones (which dominated my life since my first chemo in May 2018) have been exhaustion and fatigue, and I already discussed them in previous posts. These of course will disappear. On the other hand, some of the minor ones seem to recur, and I wonder which of these will stay with me forever. Many of them seem to manifest themselves at random times and for unpredictable length of time, and others are more persistent. Some I actually find amusing, being diversions from others. If you search the Internet for side effects of chemotherapy you will find extremely long lists...

A week has passed quickly – Edna returned from Israel yesterday, relieving Yuval of his daddysitting duties, so he could return to his TA (and other) duties at Stanford.  It was a good week. My blood numbers rose (as expected on the 3 rd   week after chemo, but even more so). Also my back, probably due to the brace which I wear now most of the day, is less painful and in fewer situations. In particular, I sleep better at night – in short, a good positive feedback loop. The fatigue seemed to have decided to concentrate its efforts on the afternoons and evenings, so the mornings are better, and I was able to go for a walk almost every morning, and went to IAS today. Being with Yuval was great quality time as usual, but among the many topics we discussed, we talked math, actually quite a bit of it. I was much more concentrated, and it was great to hold long, technical discussions again, after a long time where (at this technical level) I was able to do so very sporadically and...

Nuri, our 2nd granddaughter, was born Wednesday morning in Tel Aviv, and I am in 7th heaven. While I would have loved to be there, video conversations go a long way!