By David Weinstein
Acclimating to being home again after two separate lengthy stays in the hospital and away from family, especially my child, was a welcome challenge.
My son was at an age when kids are considered to be small, energetic, walking petri dishes that carry and grow a plethora of lovely bugs, which could have been deadly for me. So I didn’t see him much for those few months.
When I had settled enough to go outside and be near other human beings, with due caution, I was able to drive my son to school and pick him up at the end of every school day. Regardless of how the circumstance came to pass, I see that period of connection as one of the silver linings to the cancer diagnosis.
My wife had returned to work after taking off a couple of months to help care for me. I ended up being the stay-at-home Dad from grade three through our son’s senior year in high school. I believe that the relationship my son and I have today is the result of our one-on-one time all those mornings and afternoons when my priority was him. I didn’t have a nagging pull to get back to a meeting or return a missed call, so I found myself 100 percent present when we were together.
A typical day during the school year could include having breakfast with my son before taking him to school, then driving to University of California, San Francisco (UCSF) for various tests and port check-ups, medication adjustments, and the monthly dreaded bone marrow biopsy. A large lunch in San Francisco was my reward. Then back to Marin to pick up my son from school. Once home and after an afternoon snack, he would do some homework while I made dinner – sometimes with his help. As I write this blog, I am realizing how much meaningful time we actually spent together then.
I was still dealing with some symptoms of GVHD and other effects that were directly related to the protocol administered at UCSF. Chronic Fatigue Syndrome, which has me sleeping approximately 12-14 hours in a 24-hour period has never changed. When my son was younger, it was simple to nap for two or three hours in the afternoon, and then pick him up from school. But I do much better not napping; and instead, lengthening the duration of night-time sleep. So, as our son became more self-sufficient, he would get himself up for school and I would sleep as late as needed; then I was always home when he returned. I recall missing those morning periods together and sometimes would make them happen with needed filler-sleep later in the day.
Today, about thirteen years post-BMT, some of the mild GVHD remains; the fatigue is still present and the peripheral neuropathy is a standard daily symptom. But all of it is manageable. As stated earlier, the benefit of exercise, the right medications and a really healthy diet all work well in unison.
Separate, and equally as important, is mental and spiritual health. That will be the topic of the next blog.