Avi's Lymphoma

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)....

What is the next number in this sequence: 0.2, 0.3, 0.4, 0.7, 1.3, 3.8, 11.8? It may be hard to guess from what looks like exponential growth, but the next one is 11.2, and this is good! The sequences is my White Blood Cell (WBC) counts in days +7 to +13, signifying that the donor stem cells engrafted in my marrow and started generating white cells. In that second week after transplant the graft is “encouraged” to focus on generating white cells by a daily injection of Neupogen, an artificial protein designed for that purpose. My marrow reacted very fast, and they stopped the Neupogen after 5 shots, as my WBC overshot the normal range [4-11]. This allowed the new stem cells to switch focus and allow other type of blood cells be generated, and indeed my platelets counts shot up as well, from 27 to 68 in the past 3 days (here the normal range is [160-400], so I have some ways to go). The same is expected to happen soon with my Red Blood Cell counts – here it will be interesting to se...

Everybody arrived safely and we are having a great time together. Avi and Yuval met Nuri for the first time to their mutual delight. The pics attest to everybody's happiness at being together. There is also very good news on the medical front – Avi's white blood cell counts are improving dramatically and the doctor is very satisfied with the progress, and thinks Avi may graduate soon to coming in only every other day!

Notice the title – we are into "Days" with double digits! So Avi's white blood cell count is creeping up – very very slowly but even so this is very good news and we and the medical team are very excited. He did need an infusion of platelets today but that is expected. His immunosuppressant levels are still being adjusted every few days based on their levels in the blood – it is all a very fine juggling and tweaking art. The other wonderful news is that Einat and Nuri (who will be one month old tomorrow) will be landing in Newark in a few minutes! Eyal went to fetch them and they will all go together to a hotel nearby. We may or may not see them tonight, depending on how tired everyone is, but in any case we'll have the next 4 days to enjoy each other's company, including Yuval's company – he will fly here tonight and will arrive tomorrow morning. So it's all very exciting.

It's a week since the transplant! We are falling into a routine. The hospital calls every night and tells us when to come in the next day. Once we get to the hospital it's blood tests, an infusion of an anti-fungal agent, maybe some hydration and other things as needed. The nurses run the show, the nurse practitioners who supervise them make some more decisions and the attending physician pops in for a chat and may make some adjustments too. The main adjustments seem to be in the levels of the anti-rejection drugs – their levels are measured daily and have already been adjusted a couple of times. Today is super cold, and tomorrow will be worse so Avi did not walk more than to the hospital and back. But the previous two days were very active. On Sunday Eyal and Avi took an Uber to the northern part of Central Park and walked in the woods there. Yesterday Avi and I walked along the East River.

So, it is Day +5, and the 3 rd   day since we got back home from the hospital. All in all, I must say that I expected much worse from reading and talking to other people who had a transplant. The main thing they describe is extreme weakness. I feel fine, almost normal, and if it weren’t for my (reduced now) back problem, which is of course unrelated, it would probably be even more normal. I sleep well, eat well (in both senses of the word), and have energy to answer e-mails, think a bit about math again, play lots of backgammon with Eyal (I think the stem-cell donor had more luck that I did, judging by evidence so far), and what is more important for the doctors and my recovery, walk! I march about 2 miles a day:    one going back and forth to the hospital every morning, and one after my beauty nap in the afternoon, strolling the freezing streets of Manhattan. Hope this boring routine will continue! Here at the outpatient unit every day is different, depending on my ...

Things continue as well as they can. Avi got another tiny bit of chemo this morning and after that was discharged from the hospital! We walked the 8 blocks back to the apartment easily, despite the cold and brisk wind (Eyal and I looked like Christmas trees – were laden with all kinds of supplies the nurse gave us - masks, gloves, sterile wipes, wound dressings – you name it!). Tomorrow we are due back at the outpatient clinic (the Red Team) at 8:30am – this will be our routine for at least the next month. When we are in the apartment we can all be without a mask and gloves – we just need to wash our hands thoroughly and often. Avi does have to wear a mask and gloves when he is walking outside or in any public space. Otherwise very few restrictions. P.S. Eyal & Avi went for a walk – it was very cold. P.P.S And then Eyal made a most fitting dinner - Osso Buco (get it?), and those of us who drink had a bubbly.

Basically, all is going well. Another night passed quietly and uneventfully – I rested well and feel quite energetic. I walk the corridors as needed, my appetite is good etc. All my vital signs (temperature, blood pressure, pulse) keep constant for 2 days now. The cultures taken after I had fever Sunday night came back negative, so with all this positive info they disconnected me completely from all wires (telemetry) and lines (various infusions of antibiotics and liquids), and now I don't have to carry that pole on wheels everywhere I go! Great comfort, also at night, when these things tend to tangle... My blood numbers are also as expected. Reds and platelets are not generated anymore, and I'll get transfused as needed. The white cells are almost at zero, so this is the time I am most susceptible to infections. The main measurements they seem to care about are certain immune suppressants, Tacrolimus and Sirolimus, which control and tame the expected GVHD (graft versus ho...

Not too much to report – when I came in this morning Avi was attacking a huge omlette and the day has been quiet and uneventful since – talking to the medical team which is very encouraging, some walking around the corridors (many more rounds than in Princeton but that is because here it's 14 rounds to the mile, vs. 3 in Princeton),  eating, and working on our computers. Let the peace and quiet continue!

And we are done! The transplant took all of 45 minutes and as expected was not more exciting than any of the dozens of transfusions Avi had over the last couple of years. (But the next weeks/months will probably be more eventful and challenging – one day at a time)! We spent most of the time on a conference call with Einat, Sahar and Nuri in Tel-Aviv and Yuval in Palo Alto – lots and lots of jokes and laughter. Avi's nurse, Raraello seemed quite amused. Avi told the kids that now that he is no longer blood-related to them he is writing them off his will! That kind of jokes... So that's it – the deed was done and now it's time for recovery to start. Our deepest thanks to the anonymous donor, and please do consider registering in the stem cell registry and donating blood and platelets.

Yes, today is Day 0, the big transplant day, but it is just starting so nothing to report yet. So instead let me tell you about yesterday, the last pre-transplant glitch. So, on Sunday evening we went home after I was done with the pre-transplant chemo. Everyone congratulated  me םמ how well I withstood it, practically without side effects. But nothing can be perfect. That night turned out to be a nightmare, starting with a sore throat, then chills, then nausea, then vomiting, and then fever rising above the threshold requiring me to come to the emergency room for fear of infection. We arrived there at 6am, and I got the full spectrum of antibiotics, blood cultures and lots of liquids as I was completely dehydrated .   Luckily , this was the day I was checking in anyway to the hospital , so I got my room at 10, and could quickly regain some lost hours of sleep and start to recover (this was not as easy for Edna, who also didn't sleep that night). But, they also needed...

These posts keep you all pretty up-to-date on my current condition. So I thought I’ll put a few pics of the people who shaped me so that  I am prepared (in particular) for this long ordeal  (which is far from ending – the medical team here call transplant "a marathon"). Of course, in different important ways, all also play a central role in helping me go through it all. Like most people, these foundations were built in two phases. As a youth, I was mainly formed (mainly) by my parents, Shoshana and Pinchas (who passed away), and my two brothers Meir and Oded. As an adult, I was (trans)formed (mainly) by Edna, my partner in everything in the past 40 years, and our kids Eyal, Einat and Yuval.   Now back to poetry. The first poem is by Rachel, who we already met (Bluwstein is her last name – as I mentioned, she is so famous she is called only by her first name). The song is called   So often in summer     ( לא פעם בקיץ ). Rachel’s   Hebrew lyri...