Avi's Lymphoma

Happy holidays This is certainly happening here. Most of the family is visiting again for a week — here is some of what we did: https://photos.google.com/share/AF1QipM4rpBa1m72cCTMbJUbQ1PGl4fjiyeu5cljj9acz8I2U3N-FOleVDctP-mWVC1ahg?key=SkRmNS10M1U1NWRTZ1J5VkxuWm92RXlZeWdBQnlR  One highlight for me was riding bicycles again after a very long time - we went for an hour around Central Park. Pics are better than many words... Happy New Year!

Things here continue to move along nicely. Here are a few more milestones from the past week.   Yesterday I got the last scheduled treatment at the hospital!     From now on, if all goes well, it will be only blood tests.   The results of these continue to be very good. For example, my hemoglobin level went above 10 for the first time since the beginning of this illness (there was a blip during one of the early treatments when this happened, and soon fell again, but mostly I was hovering between 7-8). I have no idea where above 10 this level will stabilize (normal for adult males is between 13 and 16), but being very anemic for so long I can feel and appreciate this increase in the ability of my blood to carry oxygen (e.g. my heart rate is going appropriately down, which affects any physical activity).   Another piece of good news came from the pathology report of my bone marrow biopsy 2 weeks ago. Recall I explained the notion of chimerism – basically what...

A quick post as there is nothing much to report. Avi is doing well and is getting stronger. He even started growing back some facial hair! The last ten days were very uneventful – we took some walks, saw many friends, had our first movie outing (on Tuesday afternoon, the theater was almost completely empty). We saw Knives Out which we both enjoyed a lot and highly recommend. And of course Avi had blood tests every 3-4 days, and the numbers are all steadily improving. He also got his weekly Rituxan infusions – will get the last one on Friday. Yuval and Vivian will arrive on Thursday morning and stay with us. Einat, Sahar, Tamar and Nuri will arrive Friday. They won't stay with us but we plan to hang out together as much as possible. Tamar will surely love the Christmas decorations and festivities —it will be a novel experience for her.

It is getting hard to find “news” as the past week has shown, and so the rate of our posts may go down. Be assured that this is a good sign! As some of you may know, transplant teams at hospitals like to name the transplant date as a “second birthday’’. My transplant was on November 5, so I am officially one month old! And I got a very nice gift for it. On Tuesday, on day +28, I had my first bone marrow biopsy after transplant. While most results will take a week or two to arrive, my doctor (who is at a conference in Florida) asked his nurse to call me with preliminary results that excited him: no lymphoma cells were found! It is the first time in 2.5 years that my marrow seems cancer-free!   This disappearance of cancer cells may be due to the EPOCH chemo I got just before transplant (a biopsy before the last round of EPOCH showed the cancerous cells decreased to 0.36% of all white cells, and perhaps the last round killed the rest).    Or perhaps the new immune ...

Yuval and Vivian left, Oded arrived! So the sleeper sofa continues to be very useful and even reasonably comfortable and we are very happy with all the company. We went for a long and cold walk in Central Park and then last night we had our modified Thanksgiving dinner . Today we 3 went together to the hospital for the bi-weekly appointment (by bi-weekly I mean the second definition in  https://www.merriam-webster.com/dictionary/biweekly  — twice a week). The big news today is that the Hickman port was yanked out! Avi says this was done in the most casual fashion — literally was yanked out by a physician's assistant. From tomorrow on Avi is free to splash around in the shower to his heart's content – the small pleasures in life! More importantly his numbers continue improving. Today he got another dose of Rituxan – he is due to get 3 more, once a week until December 20. Some people react very badly to it, but luckily we already know that Avi tolerates it very well. T...

It is 3 weeks after transplant! Today, after three days of vacation, I am back at the hospital for tests and some treatments. All in all, the blood numbers continue to be great, and my doctor is very happy. In a week they will perform the first bone marrow biopsy after transplant (and other more detailed blood tests), and will be able to tell exactly how much of each line are the donor cells (for Greek mythology lovers, this is called a   chimerism   test). I am also back to the normal clinic, and will need to come to the hospital only twice a week, on Tuesdays and Fridays; this is both another indirect good sign, and a blessing in itself. Finally, they will soon remove my Hickman port (that 3-lumen port used to allow lots of infusions to be given in parallel). I will be left with only my medi-port that I had now for almost 2 years. The advantage is that I’ll be able to finally return to taking normal showers again (the medi-port is under the skin, so can be exposed to ...

With all the good news about Avi's recovery they decided he does not need any longer the special tender care of the Red Team. So today was his last visit there – his numbers are good and rising, the levels of the anti-rejection drugs were tweaked some more, and he was declared to be recovered enough to start going to the regular clinic starting on Tuesday. So, barring any unforeseen changes, he will have to come in twice a week – alternating between seeing the transplant doctor and the nurse practitioner. Every such visit will focus on blood tests and the occasional treatment (infusions and other medications) as needed, but now the infusions will be in a general infusion center and not in one dedicated to transplant patients. This is an exciting graduation and we are very thankful to the lovely dedicated team (we will surely still bump into them occasionally – all the treatment suites are on the same floor and the nurses do occasionally shift from one treatment suite to the other)....