Avi's Lymphoma

Chemo cycles are weird — the patient is given a lot of nasty stuff which is hopefully beneficial but definitely makes him pretty sick and very weak. Then they wait, the patient feels worse, hits the nadir, starts improving and just when things are really improved it's time for the next cycle! So Avi is feeling relatively well these last couple of days (except for his back which is somewhat worse again after some wrong movement a few days ago). He has more energy, was able to deal with some urgent emails and such, celebrate the arrival of the book and enjoy our latest guests — Eyal and Avi's brother Meir who arrived last night. Was another beautiful day here — and we followed the familiar routine — coffee, a walk on campus, talking, laughing... We'll go out for dinner tonight and then tomorrow it's back to the hospital for the third (and hopefully last before the transplant) round of chemo. It's Erev Rosh Hashana (the Eve of the Jewish New Year) tonight — so ...

Look what arrived today after 5 long years!

Yesterday we spent most of the day in NY, for testing and meeting my doctors at MSK (Memorial Sloan Kettering), a prominent cancer center. I had a bone marrow biopsy, and in less than a week we will know how effective the current EPOCH chemo treatment was on eradicating most of my cancer cells. If, as hoped, it was effective, then indeed there will only be one more round of that chemo (starting next week, in Princeton again), and I will go into transplant afterwards at MSK. Indeed, we even have a date for the beginning of this procedure — October 29. It all looks very real! And of course we had (a mediocre) lunch!

Just a brief post: When it rains, it pours :) Edna’s brother left, and now my brother Oded and his wife Orly are visiting for a week.  Besides the great company, you can see Oded replacing our broken bathroom faucet, and reading me short stories of Issac Bashevis Singer. And next week my other Brother Meir will come for a week, with our son Eyal! Health-wise  things are steady: sleep is good, back aches bad, I am tired as expected  with the low blood counts, but the weather is great and we still go out as you can see, and also had people over for a brunch in the backyard today.  Will get more blood,  both red blood cells and platelets, on Monday.

This post has a happier ending than the post title might suggest. This happy ending has nothing to do with the enclosed one of  the millions of kitschy pictures you get when image searching this phrase. It certainly has nothing to do with the kitschy song by the same name   https://www.youtube.com/watch?v=wvRe_pt9XHo   (believe it or not, I used to love this and all songs of The Platters – but I was in high school, and this was the music we danced “slow” to at parties…). But it does have to do with songs! In a previous post I talked about exhaustion and fatigue. Here I will focus on fatigue, and indeed just one important aspect of it which I just named Twilight Time. Before getting that specific, let me invest in a paragraph on the general issue, which I may write about more.   I believe we each get used over life to the way our brain works (pace, contents, whatever…), and take this function for granted. One radical aspect of my illness and treatments...

Back in July we were hoping to spend this week in Israel. Avi was to give lectures in two conferences and he was very excited about both. We were also planning to perform our civic duty and vote. And of course we were looking forward to spending the week with the family, see friends etc. From Israel we were going to go for a week to Heidelberg to another conference. But plans do change and we knew all of this won't pan out when we found out that Avi's situation has changed and we will be spending many months now focused on treatments only.  With that, we are very happy and grateful about all the trips we did manage to take in the spring and early summer! Today, for example, started with a CBC (Complete Blood Count) and a doctor's visit. As expected all of Avi's numbers plummeted due to the chemo and as also expected we had to go to the transfusion center at the hospital for transfusions of platelets and red blood cells. In fact, Avi needs two units of red blood cell...

I am new to blogging. And, when having enough energy, I enjoy it – another important discovery for passing time when other activities I like are impossible for me. I typically feel comfortable sharing personal stories, feelings etc. (e.g. I was open about this cancer, and its effects, from the beginning with practically everyone). But in most cases have done so face to face with one or a few, so details and manners can be calibrated. Blogging is sharing to a large audience of different people you don't see. As I write personal stuff in this blog, I become conscious of many issues like this, particularly on their meaning and possible impact. Most of my thoughts regarding this issue are obvious, but I thought I'd share them in this post anyway.   I do this in the context of the title, as some posts do describe my pain, discomfort, etc. For example, what does it mean to any of you, when I say e.g. “I feel excruciating pain in my back getting out of bed” or “I have the energy le...

My brother is leaving tonight, so time to post some more photos. Was a great visit spent mainly laughing, strolling around campus, eating and drinking. Now we are getting ready for the next visitors - Avi's brother and his wife who will arrive here in a couple of days.

This post may be less fun that the previous one... I have mentioned side effects of chemo and battling them. But by far, for me, the most devastating ones are the obvious, (physical) exhaustion and (mental) fatigue. As these hit me again big time after coming home (on time chemo-wise), let me write a bit about it. Of course, the intensity of these varies, and I am describing below the bad times. As most of you have seen in the past 2 years, there were plenty of good times! I now have almost a year's experience of chemo (5 months of R-CVP May-Sep'18, 5 months of Ibrutinib Mar-Aug'15, and now this EPOCH), and in a sense I had a gradual introduction to these. I was extremely proud of my body during R-CVP, that unlike most of what I read to expect, I was "mainly tired" and could function reasonably most of the time (e.g. on average moving and thinking at 1/2 speed). During Ibrutinib I paid for my vanity – at least two of these 5 months I was in a state Edna calle...

Friday was rather uneventful and went according to schedule - the orange stuff's bag was drained around noon and then another infusion of a different agent, and we finally left the hospital around two. Always nice to be back home - as comfortable as the hospital room is, there is no comparison. Not being attached to an infusion and having to walk around dragging the infusion pole is another huge advantage. etc. etc.... I walked to our favorite cafe this morning, Avi and my brother drove there. The weather is perfect - on the cool side and it's very pleasant to sit outside (we do avoid closed places to reduce the infection risk). Went for a short walk on campus, and also to the doctor's office for a post-chemo shot (which helps the body boost the white blood cells production). Some friends came over and more are coming later but all in all we are trying to stay low-key and quiet. Avi takes frequent naps as needed and tries to recover some of his energy. The coming wee...

  I am due to be released home today, when done with the 2 nd   round of this 5 day continuous orange mix of poisons. All in all, it was easier than the 1st round – as Edna’s last post says “Practice makes perfect (almost)”. I was better prepared to protect my fractured vertebra     (better chair, bed controls, foam topper for the bed, etc.). I was also better prepared to fight some of the side effects of the chemo (this is my third chemotherapy treatment in the past 2 years, and they each have different ones….), this certainly the most potent (e.g. my new hair do ). The many morning pills in the picture (and the evening ones, and the many other things they directly inject to the I.V.) are of course part of theses anti-side-effects agents, and one wonders which cancels each other before they cancel the side effects… Now for 16 days of respite at home. In the previous, 1st round, I had to spend 5 of these respite days in the hospital due to fever (which luckily e...

Practice makes perfect (well kind of). Avi is on his last bag of orange stuff and that should be drained by the early afternoon, and then we'll go home until the next time (in 16 days or so). We spent the days walking in the corridor (looks like each such round is about 0.5 mile long!), eating (I bring food in and we kind of pretend it's a picnic), and of course more poem translations. My brother arrived yesterday morning from Israel for a long weekend and that is great. We are also having some other guests at the hospital which is fun but we keep this short as Avi does tire very easily. And of course lots of visits with the nurses who are really nice despite their tendency of poking Avi with needles. They also choose beautiful assortments of pills to dispense periodically:

It is our third time here this month, (for this 2 nd   round of EPOCH chemo, and after the 1 st   round of chemo and my emergency hospitalization with fever) so we gained some experience, and I will share some general experiences. I am naturally hospitalized in the “cancer ward” (and intend to re-read the famous Solzhenitzin’s masterpiece by the same name I read   and loved   as a kid soon). It is an amazing unit, with especially professional nurses who at the same time are all extremely nice and and have a small patient / nurse ratio load and plenty of time for each. You see your own doctor on top of general hospital doctors. The hospital is brand new, with a very spacious suite for each patient    (so much so that a couple of years ago when Edna was here for a minor procedure, just after we became empty-nesters and talking about down-sizing, I suggested we move in to such a unit permanently…). So what can an Israeli complain about (without it, yo...

Avi entered Princeton Hospital for the first of the 3 scheduled EPOCH chemos on Wednesday, August 15. EPOCH is an aggressive chemo regimen, designed to quickly reduce the fast growing cancer in the bone marrow, so that as few cells as possible remain before the stem-cell transplant.  Princeton Hospital is very new, with large well appointed private rooms and an incredible staff. The chemo drip itself started only the next day and was rather uneventful. Our oldest son arrived from Israel Thursday morning so he got to see the whole cycle. The drip is give over the course of 5 days - a new large bag of bright orange poisonous looking liquid was attached to Avi's port every day around 4pm, and he was allowed a very quick shower between the bags. Avi came in with a backache which he had for a couple of months, and the hospital bed made it quite worse, but despite that we managed to walk miles around the corridors - luckily the corridors are very long and wide, but it does get quite bo...