Transplant – moving to NY

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 completely wipe out your immune system, making room for the new one. Then on day 0 you get the donor’s stem cells – this is a simple transfusion (getting the stem cells from the donor is more involved, and I encourage everyone to consider being a donor – see e.g. here https://www.youtube.com/watch?v=6OUYvleM68M). Then, these donor stem cells somehow know that they should find their way to your bones, settle down in the marrow, and start the factory of producing all blood cells (red, white, platelets etc.). If everything is OK full production is achieved in about 2-3 weeks.

During this “critical period’’, one thing is clear: you practically have no immune system to speak of, and any little bug can kill you! In past times this was done in complete isolation. With improvements of various drugs, and strong antibiotics, isolation was replaced by various cautionary procedures, you would be in a special isolated part of the hospital, but can have guests who wear appropriate gowns, gloves, masks etc., and of course are perfectly healthy.

So, we were quite shocked when about a month ago my transplant doctor recommended that I have this procedure as an outpatient! Basically, you live in an apartment near the hospital, come every day for the appropriate treatments and tests in the hospital, but return home after it.  It seems incredible that they “throw to the street” a person with no immune system, but turns out that this outpatient version has existed for years, mainly with children, then mainly with “autologous” transplants (in which you are transplanted with your own stem cells after they have been extracted and undergone special chemo), and more recently with “allogeneic” transplant patients like me, who get their stem cells from an external donor. When I asked the doctor how many outpatients like me (allogeneic) did they treat (and this is MSK, a top center), the doctor answered “2”. They also did about 40 autologous transplants in 2019. Anyway, he explained the rationale: less risk of infection in the hospital, and the relative convenience of being most of the day in an apartment which is more convenient than a hospital room. On the other hand, as aggressive bacteria infecting the blood (sepsis) can kill you in hours, it seems relatively safer to be already in the hospital, where they might notice an infection earlier, and can treat it faster. Of course, my transplant doctor stressed that it is voluntary, and I can opt out and be during the critical period as is common, “inpatient” at the hospital. Moreover, at any time and with any problem I will be admitted to the hospital again.

After reflecting on this decision for a few weeks, talking with other doctors, reading more etc. (and of course getting conflicting opinions) I decided to go “outpatient”, with a small variation in which I will be in the hospital in the “very critical period” of day -1 to day +3. We were lucky to get a 2-bedroom unit at the MSK apartment building, which is 8 NY blocks away from the hospital. So hopefully, if we recognize any problem or change (and we have to very alert to fever, rashes, weakness, mood change, etc. which might indicate infection), I can be back in the hospital in about 15 minutes. Moreover, Eyal arrived yesterday and will stay with us during this period, who brings not only another pair of sharp eyes, sharp senses, muscle, not to mention a fun company for both Edna and me. Anyway, lots of things can change during this period depending on how I react to all drugs and the transplant itself – this being an external donor transplant, one expects a “graft versus host disease” (GVHD), namely rejection symptoms (as the new stem cells and my own body are sworn enemies, and may, indeed will, attack each other). These can vary in strength and may last for months or years, and are typically dealt with carefully dosed immune-suppressants.

Then, once this critical period is over, we need to spend another 3 months in the same apartment, close to the hospital and arrive for tests at the hospital very frequently, first every day, then every other day etc. One has to remember that the new immune system, even when fully functional, generates “virgin” white (B & T) cells, that still don’t know how to fight infections, and have to learn how to do it like a baby's, simply by being exposed to infections – but not too much. Needless to say, one of the precautions is an “low-microbial” diet, which is aimed at make sure I am not exposed to bacteria in it. All in all it is not too big a restriction: I can eat any cooked food, or any dried food (like my favorite morning granola), or even some fresh products if it can be washed clean. I should also be at safe distance from potentially sick people, so for a while the famous highlights of NY – restaurants, theatre, concerts I will be able to enjoy as much as Moses did the Promised Land…And this will apply to Edna and Eyal, who will have to be careful not to get infected as well.

By the way, the comparison above  to a baby is in place, and e.g. a year after the transplant one gets the same immunizations a baby gets at this age (a friend jokingly suggested I can become an `“antivaxxer”, and when telling this joke to our nurse, she told us she once had a patient who actually refused these vaccinations. People’s behavior defeats all imagination – that person trusted the medical profession with all the dangerous procedures of a transplant, but not with vaccinations…). A baby does have one big advantage over a transplant patient: it has when born some immune system cells of the mother, while its own are learning to function. Anyway, during this period hopefully  both my immune system and me physically will get stronger, I will be allowed to start seeing people in NY, and of course be in touch with the rest of the world electronically.

Then, typically after these 3 months milestone (or whenever the doctors say I am ready), I will be free to go home, and visit the hospital less regularly, initially once a week and then even less frequently. Of course, I still have to be careful of infections, and the effects of possible GVHD may manifest themselves more strongly in this period. As I mentioned, while much progress was made in battling infections and GVHD over the years, this remains a dangerous procedure. Even for a “healthy, young person like me” (I am quoting the doctors – this means I have no other disease than cancer – no issues with heart, blood pressure, diabetes, etc.), the chances of surviving the first year after transplant is still only at about 85%. So, I continue to count on being lucky as well!

OK, by now you know that all medical information I provide is merely a prelude to what I really want to share with you: more poem translations. I will return to the giant, Nathan Alterman, and to two songs of his which I sang to my kids as lullabies maybe a zillion times (and same to Tamar, sometimes on Skype, and hopefully soon to her sister Nuri – at 10 days old it may be too premature…).

• The first one is Boulvards in the rain ( שדרות בגשם). I feel that any parent who is in the habit of using any walk with their child as a chance of educating them about the sights we see around us, will of course sympathize with this poem, except it is amazing which objects and sights Alterman chooses, and his deep insights about them. Incredibly enough, Alterman wrote this poem years before he had kids! The original Hebrew lyrics are here https://shironet.mako.co.il/artist?type=lyrics&lang=1&prfid=743&wrkid=8121 . My favorite performance is here https://youtu.be/uGZDQuJF2D4

Boulevards in the Rain - Nathan Alterman  


The rain combed the boulevards, in light they are bathing
True beauties are typically shy, never vain
I stroll with my daughter, who doesn't stop laughing
Among all the things that were born again

The glass, lucid, clear, on each storefront and household
What can penetrate its serene, frozen poise?
Just like on our own soul's, so too on its threshold
Is where light is parting its ways with the noise

The iron is both a meek slave and a great king
The blacksmith of days, who is carrying their weight
And here we are passing the stone, our sibling
The strong one who even one tear never shed

The fire and water grew now even bolder
We pass in our walk via mirrors and gates
Dark river of night flows through luminous borders
Its banks are the next and the previous day

Now look, we will reach  in a few minutes only
The very last house on this very wide street
Beyond it the sky spreads, just standing there lonely
A small child is throwing a ball at its feet

In light and in shower our boulevard is bathing
Please speak to us, green one, let rattling leaves bark
Observe oh my Lord, with my daughter, still giggling
I am strolling along in your beautiful park

• The second poem is a difficult one, Protect yourself ( שיר משמר). It was written shortly after Alterman’s daughter, the poet Tirza Atar, had a mental breakdown. I mentioned already the strong and complex relationship between the father and daughter, some aspects of which are certainly manifested strongly here. (I just watched this movie which presents some of Iit through interviews that anyone can watch for $6 here. Its title “Bird in a room’’ is borrowed from this poem.)  (Part of the full story and complexity is that later on Tirza Atar wrote a “response poem” to her dad, which I hope to translate.) Again, here too, I believe that any parent who is worried about their child, hoping that no harm of any kind ever comes to them at any age, will sympathize with the title and message of the poem. But here too, Alterman writes it in a unique, beautiful, powerful and haunting way.  I should note that he actually wrote a much longer poem, 11 verses, of which only three were given music. I translated only these, most familiar ones, but encourage anyone who can, to read the full poem.  The original Hebrew lyrics of what I translated is here  https://shironet.mako.co.il/artist?type=lyrics&lang=1&prfid=383&wrkid=3009 and two performances I love are here https://www.youtube.com/watch?v=m4QrfOsT6N4 and https://www.youtube.com/watch?v=RKNIgtKeKfc

Protect yourself - Nathan Alterman

Protect your soul, protect your strength, protect your soul

Protect your life, protect your wits, protect your life

From shadows dark, from roofs aflame, from falling walls 

And from a sling stone, fingernails, from a sharp knife 

Protect your soul from that which cuts, from that which scalds

And things around you, like the earth and like the sky 

From that which waits, or that which pulls, and do recall 

Water in wells and gas in stoves can make you die

Protect your hair, protect your mind, protect your soul

Your skin protect, please guard your soul, protect your life

A summer evening so it seems, yes it appears
A pleasant summer eve, familiar and tame
Which has the promise, of calm and grace, but not of fear 

Nor of suspicion or the slightest hint of blame

Great smells of cooking in the air, we’ll dine in here 

Under the light, and then we’ll rest or play a game 

A summer evening nice and warm, so it appears 

A summer evening which does not portend of fears

And then a stealthy hand extends out from the breeze 

A window’s very slowly opened, just enough

Oh please explain why you like happiness so freeze 

Oh please explain why I feel terror when you laugh 

Why do the fire, water watch from every angle 

And why our world is foreign, hard to comprehend 

Please tell me why your precious life within it tremble

Just like a bird inside the palm of your hand 

Explain why shaky and erratic is your flight

Just like a bird trapped in a room, seeking way out

A summer evening so it seems, yes it appears
A pleasant summer eve, familiar and tame
Which has the promise, of calm and grace, but not of fear 

Nor of suspicion or the slightest hint of blame

Great smells of cooking in the air, we’ll dine in here 

Under the light, and then we’ll rest or play a game 

A summer evening nice and warm, so it appears 

A summer evening which does not portends of fears

Protect your very weary soul, protect your soul

Protect your life, protect your wits, protect your mind

Your hair, your skin, your beauty too, protect them all

Protect your very gentle heart, and hug it, with all your might