For those who don't live in leukemia/lymphoma world, this is a rare type of lymphoma that presents with open weeping, bleeding difficult to heal skin lesions anywhere on the body. The only definitive treatment for these sores is chemo followed by a transplant.
Prior to Yoshi's BMT admit, he had endured many rounds of chemotherapy, so he was somewhat familiar with the drill. He had a steady parade of Hasidic visitors- all from Boston. What we didn't realize is how closely knit this community is- and once the Boston Hasidic Jews heard that "one of their own" was in their city, they rallied and came to visit on a regular basis. It didn't matter that they didn't know him, they were there to support him through his treatment. On Shabbat (Friday, the Sabbath), the Rebbe (Rabbi) would come with many more visitors and have a modified worship service. Every visitor came with food- tons of Kosher food. They couldn't cook in our kitchen as it wasn't Kosher- so they brought their own hotplate! It was an honor to be approached by a bearded young man with a plate heaping full of food. Unfortunately, not all the staff embraced their show of gratitude with acceptance. Some nurses (and housekeeping staff) complained and moaned when they saw these visitors approach the kitchen with their food and hotplate... They were loud, took up a lot of space and monopolized the kitchen while they were cooking!
So the many chemo visits helped us to identify what was going to be important for this young man, and also draw up a contract. As the weeks of treatment passed, we began to see that the transplant admission was potentially fraught with problems. Coming in for chemo is a routine admission- the actual transplant a bigger deal. One must expect to stay 3-6 weeks on average while marrow recovery takes place. The patient is much much more immunocompromised for a longer period, and preventing infection that much more important. Though patients generally recover faster today due to growth factors, they still expect to get pretty sick- fevers, chills, mouth sores, diarrhea, possible sepsis, respiratory failure, etc etc. There is a slight chance that they won't recover.
Hasidic Jews don't worship with both sexes together- they are extremely modest. Yoshi preferred male nurses and docs, but that wasn't always possible. He frequently had a room full of visitors- as many as 10 men in huge fur hats, coats. Visiting hours didn't apply to his visitors. He was able to eat through his chemo treatments, so his room was usually covered with boxes, jars, bags of Kosher food- more than one person could reasonably eat in a 4 day period! One of his visitors even brought him a HUGE stuffed toy horse- what reason- I never did find out. As this is an adult BMT unit, we don't allow overnight visitors unless the patient is eminently dying or there is a language barrier and we need the visitor to translate.
Prior to his, BMT admits, the team sat down with Yoshi and his father. (His wife would stay behind in NYC.) It was agreed to keep visitors to 4, that food would be cleaned up and put away at the end of every day, that he could have one visitor stay with him at sundown on Friday night. Observant Jews are not permitted to do any work on the Sabbath. Pushing the call light- is work! Pushing the steel plate to enter and exit the unit- is work! I still remember the 3 or 4 men patiently waiting at the entrance of the unit for someone to come and push the steel plate. When they were ready to leave, again would stand patiently until someone noticed and let them out. (I never did find out how they got to the street level from the 8th floor- walking down 8 flights of stairs seems more work then pushing two elevator buttons, but what do I know?) He had to agree to sometimes having female nurses and doctors- who had to examine him. Even in his modesty, he complied. In general, most Hasidic Jews have tremendous respect for the medical community and are compliant with rules and treatment.
Male Hasidic Jews wear full beards, white dress shirts, and black pants and dress coat. After he was admitted, Yoshi maintained this dress during his entire transplant, though he did lose much of his beard and hair. He had open oozing lesions on his arms, back and abdomen- that by the end of the day, had oozed on his white dress shirt. Ugh. His visitors faithfully kept him in clean white shirts. The actual transplant was quite an ordeal, he got very sick. His friends didn't understand that when he had bleeding mouth sores and ulcers down his GI tract, that he couldn't eat. The food still flowed, it just was eaten by visitors and not Yoshi. We had to constantly reinforce the "food put away by end of the day" rule- they seemed to be mystified by our hypervigilance with hygiene. We repeatedly reminded them about the need to reduce bacteria in the room- hand washing, gels, no sick contacts, etc. I was explaining to one young man that bacteria could pose Yoshi great harm, only to come back later and find the visitor on the floor. He explained that he was "looking for the bacteria." These men typically spend many many hours studying and discussing the Torah-(the first 5 books of the Bible), but after doing my own research of this culture, often don't have more than an 8th-grade education. This visitor didn't have a concept of what bacteria are- invisible to the eye but potentially lethal.
Yoshi had specific times in the day when he studied the Torah and prayed- and I knew during this time he didn't like to be disturbed. He was scheduled for a CT scan at 2 pm, and he had to get washed up and changed into a hospital Johnnie. I reminded him in the morning, and as it got closer to 1, he was still in a white shirt and black pants. Getting nervous, I interrupted him while he was reading- and he gave me what I thought was the "thumb's up" sign. Great! He's going to get ready. Only to come back later, and he's still reading and hasn't changed. Once again, I interrupted, to get the same thumb. He put everything away later and explained he was trying to signal that at 1 pm he would get ready. They believe that you can't point your finger up- it's disrespectful to Adonai. (The Lord) Clearly, I didn't get it!
Yoshi made it through his transplant thankfully. Unfortunately, after he returned home to NY, his lymphoma returned, and he and his wife decided not to return for more treatment. He died last year, and his wife sent us a wonderful thank you letter- that she was impressed that we showed Yoshi and his visitors' respect and bent a lot of rules to accommodate his faith. I was struck by how tight this community is, and how they rally to support their members. I hope too, that our staff learned a bit of tolerance and acceptance of those from different faith and lifestyle. I grew up in a very liberal Jewish home and really didn't know much about this branch of Judaism.
I am not so naive as to not recognize the difficulties that particularly the younger members of this faith experience living a very conservative and simple lifestyle in the 21st "techno" century. Observant members must dress differently, are forbidden movies, TV, and a lot of modern conveniences. Knowing some of the challenges Yoshi faced, makes me even more impressed that he made it through one of the more aggressive therapies.
