Dear family and friends,
Here I sit in the gate area ready to board my flight back to Denver. It has been a high-paced, long and productive trip. Nadav and I arrived and like a well-oiled slip-and-slide we bounced all over Boston getting things to turn an empty fortress into a ready-to-be-lived-in oasis above the hustle of the big city. Nadav was originally scheduled to bug out a few days ago, but extended his trip so he could attend a family meeting with one of Abba’s nurses. The meeting was to get a lesson in Modern Quarantine, a spur from other similar home living empires (Good Housekeeping, Martha Stewart, etc.). It was a good thing he did. Turns out that every free minute can easily be filled and we filled them (even finding time to travel north to Lawrence, Massachusetts, famous for recent natural gas explosions, in search of furniture—ultimately found in Watertown).
So—back to that meeting with Nurse Stacey. Interesting stuff. First thing is that Abba will be admitted to the hospital on 10/31. Trick or treat? The way this works is he goes to the hospital, they install a Hickman catheter (a form of central line), and then admit him to an isolation unit where they start to administer a special mix of drugs. The isolation unit has HEPA-filtered airlocks, and while he is permitted to bring stuff with him, he submits anything he brings to the staff so they can disinfect it before letting it in. Nurse Stacey explained that because he won’t need radiation, this step in the process won’t be nearly as painful as originally thought. In fact, she seemed to think it would be mostly a feeling of exhaustion though there was a possibility of some upset stomach and loss of appetite. Mostly it will be boring. Under normal circumstances that boredom could be addressed with movies, reading, talking on the phone, but here, adding the fuzziness to the mix will likely leave most of those tasks awkward and uncomfortable.
The first few days the drug (Venetoclax) is really about increasing his odds for success. He is part of a medical study and this is the drug from that study. Then they add drugs to make room in his bones for the donor’s marrow (Busulfan) and a drug to stifle rejection of the donor marrow (Fludarabine). The day he is admitted (10/31) is considered day -9 (pronounced minus-nine not negative-nine—think mission control with its T minus countdowns). They count down then to the zero day when he is implanted with the donor marrow. For those of you playing along at home, the zero day will be 11/9. Once transplanted he will have the immune system of an infant (zero day) so from now on he will have two birthdays—July 9, and November 9. The transplant itself will only take about a half an hour. They then monitor blood production to ensure that he is not showing signs of rejection or distress and that his body starts producing blood from the donor’s marrow. They anticipate that he will be released from the hospital 24-48 hours after the implantation. Yep—you heard me right—11/10 or 11/11.
He will then be in the apartment for roughly three months under quarantine. He will begin that period in total isolation (though Eama gets to be there and Nadav and I will eventually get to be there too). During that time he will be back and forth to the clinic for administration of meds and for blood work. There is going to be a ton of blood work. While in the apartment things will be relatively normal, but the moment he leaves he will be in a mask, gloves, and will spend as little time as possible in public spaces. We did get the rubbery gym floor installed in his workout room and he and Nadav found a barely used elliptical on Craig’s List that Abba is making arrangements to have brought to the apartment.
As his numbers improve he will be encouraged to get outside; places with fresh air and few people congregating. Walking was stressed as important for his recovery. While he won’t be able to have visitors at the apartment for some time there will eventually be a time when he may be permitted to have company on walks. We’ll have to see. During cold and flu season and while on walks if he passes a new construction site or demolition site he will have to wear an N-95 mask, and the rest of the time he is required to wear a mask he will be in ear-loop surgical masks. Nurse Stacey did say that after that three-month mark if all goes as planned he will be able to start eating more normal foods and even eat out in restaurants though not in restaurants—outdoor seating only. He was briefly amused by the idea of finding a restaurant in Boston with outdoor seating open in February.
Clearly some of the information we were provided is not specific to Abba. For example, as soon as he has the Hickman catheter removed (which will occur as soon after the transplant as they can—likely within days), he will be able to swim in the ocean, but not in lakes, ponds, or public pools. You know—because he is such an avid swimmer and frequents the ocean, lakes, ponds, and public pools.
Now seems like the right time to relate that my father read an article in the New York Times about a guy who had a bone marrow transplant where a side effect of the transplant was that the patient’s Schizophrenia was also cured. You can read it here: https://www.nytimes.com/2018/09/29/opinion/sunday/schizophrenia-psychiatric-disorders-immune-system.html. He brought this up during our meeting with Nurse Stacey. But doc, after the procedure will I be able to play the violin?
In the meeting we also learned about food. No raw thin-skinned fruit or veggies for three months. That means no grapes, no apples, no tomatoes, no cucumbers—none of that. Of course cooked thin-skinned fruit will be ok. Nurse Stacey specifically mentioned apple pie. Because all of the food must either be ultra-processed (like wonder-bread-processed) or cooked at home. Eama will be busy. In addition to thin skin fruit, no sushi for a year, no restaurant food for at least three months, meat will need to be cooked well-done (as Nurse Stacey put it—gray all the way through) though things like stead can be cooked to medium. A fancy new insta-read thermometer is on its way to Eama.
Just after the extended learning session, Abba was put in the queue for some platelets. Though his numbers were not as low as they’ve been, his doc wanted him to get a little boost. Just as he did with each of you who visited him during chemo, he insisted that I snap a photo of him with Eama and Nadav to document yet another needle stick and long wait for the pharmacy to send up what was ordered.
It seems the word stoic is the word of the hour. Both Eama and Abba are being very stoic. There are moments when one or the other pauses a bit longer in what appears an attempt to regain composure but then immediately returns to a smile or a state of calm. As Eama puts it, “one foot in front of the other.” As if it is any surprise, despite all that is going on for him personally, Abba is laser-focused on the dangerous rhetoric from the President about the serial bomber who targeted many of the President’s political adversaries and his outrageous statements suggesting that the slaughter of Jews in synagogue during Shabbat morning prayer would have been prevented had they only defended themselves. Since the President took office the number of anti-Semitic incidents have increased 57% in the United States. (You can read about that statistic here: https://www.adl.org/resources/reports/2017-audit-of-anti-semitic-incidents.) Unable to attend the community rally in Boston due to his health restrictions, Abba and Eama and I took this opportunity to hang mezuzahs in the new apartment this morning.
That’s it for now. The next updates will likely be much shorter since so little will occur. Thank you to all those of you who sent messages. I’ve passed them all along. Feel free to keep them coming. You can send them to the email address from which this mailing arrives (azb@newphaseinnovations.com). Also, please continue to pass along the link to allow others to join this mailing list: http://eepurl.com/dH4Qs5. In case you miss something, feel free to check the website where the messages will be simultaneously posted: https://abbaupdates.newphaseinnovations.com/. Finally, with all that down-time if you see something on Netflix or Amazon or one of the many premium channels on cable (he has them all), Abba will need recommendations so send them along.
That’s it from here. Time to board.
From Boston for a few more minutes,
Ariel
PS
My reference to the band Abba in place of Queen in the last message was not because I was so tired and sending the message at 2:13 in the morning. It was clearly to see if you were paying attention. There was also a stream of consciousness connection buried in there. After all, Abba gave us Dancing Queen. Queen gave us Bohemian Rhapsody. Mama mia that’s a stretch. What can I say? I took a chance on it. Chiquitita.