Nuances of a New Normal
By David Weinstein
The last entry left off with the lurking problem of chemotherapy and radiation side effects related to soft tissue cell sluffing and mouth, gum and throat ulcers. This was a delightful experience that certainly fits the top most painful challenges during the entire process. Fortunately, there are extremely powerful pain medications that make it more tolerable. I was so unwilling to resort to a feeding tube that I learned how to time the pain management tools with eating so that I was able to sustain myself during the couple of weeks when this happened.
It doesn’t take long for the brown-green mush that is conveniently labeled broccoli or zucchini or peas or beans coming out of a hospital kitchen to have a depressing effect. It occurred to me that while the chemo was killing my malfunctioning immune system, the hospital kitchen was doing the same thing to the cellular tissue of anything they served. Fortunately, there are many foods that can be safely brought in and consumed while undergoing treatment. I asked for a flow of those items so I had something to look forward to. Yogurt was a big one.
Ben and Jerry’s Chunky Monkey Ice Cream belongs in a formulary, and here’s why. There was a period of time when I developed hiccups that lasted 24/7 for about ten days straight, for which no medical intervention worked – until someone brought me a pint of Chunky Monkey. After a serious dive into the container with a tablespoon, the hiccups vanished and never returned. Yes, I did write them a letter.
On the day of my transplant, I decided that it was actually my birthday, or my re-birthday. Though some coaxing was necessary with the more conservative or straight-laced practitioners on my floor, I made it clear that anyone coming into my room that day was required to wear a party hat. My son and I made the hats out of masks, obviously to be worn on heads, not faces. As with the choice to make friends with radiation and the machine that produced it, this process required some positive forces as well.
Ultimately, when the BMT had started and was beginning to take, but with a few more weeks of inpatient status remaining, my dear friend would bring dinner in once in a while, always fully cooked and frequently from Indian or Asian restaurants. Sustenance that has distinct flavor, is a color other than brown, and with texture other than mud, is a true gift.
When twice spending over a month as an inpatient, without much safe social connection because of infection vulnerability, room decor was a big deal. I know it may sound like so much fluff, but if you’re sequestered in a boring, depressing space that has only the basics of off-white paint, linoleum floors and the perpetual scent of industrial cleaning products, you have to do something.<
Ultimately, the room I inhabited for the initial five weeks was completely plastered with the cards, banners, photos, calendars and artwork done by certain friends and family, complimented by the get-well messages created by my son’s class at school. I still have most of it. When all else fails, decorate and use copious quantities of scotch tape. There is nothing like the love delivered by a group of second grade kids when they know you. I think the medical staff would agree that it enhanced the effectiveness of their protocol.
Next – BMT works, albeit with some GVHD. Release!