Nuances of a New Normal
By David Weinstein
Seen above: The donor reads to the recipient
My bone marrow donor was my sister. She was not a perfect match, but when all of the factors were considered, including proximity and our known genetic connection, she was the appropriate choice. Matches may be found anywhere in the world. However, sometimes the issue of time is primary, especially if someone is severely ill. As it happened, my sister was working for the University of California, San Francisco (UCSF), just a few blocks from where I was an inpatient. For two consecutive days, she was attached to an apheresis machine while her blood circulated out of one arm, through the system and returned into her other arm as the machine collected stem cells. When the process was completed, she walked out of that facility with her arms hanging limp by her sides like an orangutan.
Bone marrow transplant day came and went as described in the previous blog. We waited while my body responded and sometimes reacted. Graft Versus Host Disease (GVHD) was a part of that process; fortunately, only once it became life threatening for me.
The symptoms generally appeared as skin rashes or severe dryness, eye dryness and some gastrointestinal issues. For the next year or two, symptoms either became predictable or disappeared after a period of intensity.
It is important to point out that as phenomenal as my treatment was, complete and clear proactive descriptions of GVHD and other lasting side effects from the protocol were insufficient. In fact, had I not become acquainted with the National Bone Marrow Transparent Link early on, I would have remained in the dark about these issues.
My experiences since the five-year mark have continued to include rather severe peripheral neuropathy, chronic fatigue, some treatable eye issues and nutrition absorption challenges. The neuropathy is treated with certain medications, specific nutritional supplements and as much exercise as possible, albeit limited by my fatigue. I cannot emphasize enough the critical part exercise plays in this recipe. Endorphins are very real and hugely helpful. Fatigue has not changed since the end of the protocol but sleep is readily available and I do a lot of it. There are eye lubrication options that work best when combined with certain foods. That information is readily available, often from nutritionists rather than ophthalmologists.
A few weeks after transplant, my numbers started showing consistent improvement, indicating that an immune system was growing inside of me, which was becoming capable of providing the defense I needed. While the direction and inertia were present, the growth and acclimation processes were not finished. It was now time to plan a departure from what had been home on the 11th floor of UCSF.
Leaving a hospital after this kind of a lengthy experience requires a lot of planning. Since there will be months of rehab at home, everything needs to be set up in advance. Have the medications and required tools been ordered and delivered to my house? I will still have my three-pronged intravenous port in my chest and it will be used at home. Before I am released, has the rolling drip pole been ordered and delivered to my home?
Someone will need to teach my caregivers and me how to clean the ports and administer the medications through these lines a few times a day.
Once again, the magicians at UCSF showed up and basically ran a three-ring circus to make sure there were no hiccups. Even my nine-year-old son learned how to clean the port and connect various feeds. Dad had become a science project and he was happy to do it.
On discharge day, I got into a car for the first time in almost six weeks and eventually walked into my house. Aside from immediate family, nobody else was supposed to come into the house for a while. In fact, we behaved in similar ways to how we do now during COVID.
The second night home, my more severe GVHD effect happened occurred. I had been released from the Oncology Ward with a massive migraine headache, which the practitioners thought was caused by the titration from extended use of heavy pain medications. What they did not recognize was the double subdural hematoma that brought on a grand mal seizure on my bathroom floor. I was back to the E.R. again; this time, in an ambulance, and into the familiar tunnel of an MRI machine. The hematomas were actually delayed side effects from the chemotherapy. Though it was scary and rough, this was a one-time event. The hematomas reabsorbed on their own over several weeks; and though there were some discussions with the discharge doctors afterward, a new normal was establishing itself.
Next - Learning to thrive after BMT.