Homage To A Caregiver

At the moment, I'm in a sort of hiatus period. The team at Johns Hopkins doesn't want to see me again until the middle of February, which is when they will begin to try to determine the degree of success, vs. the cancer, that should be assigned to the chemotherapy part of the transplant. Meanwhile, the Christiana oncologist will be monitoring my recovery, mostly just looking at weekly tests of blood counts and electrolyte levels. I once again lost ground on strength and stamina in the course of undergoing the transplant, so recovering and advancing those will once again be my main job for awhile, alongside taking the antibiotics and antivirals that have been assigned to me. So I am at liberty to consider some things that might have fallen by the wayside in the heat of battle.

One thing I should do is try to provide some idea of what Huong had to cope with while playing the mostly thankless caregiver role in my transplant. I think I mentioned in an earlier post that, until fairly recently, stem cell transplants were inpatient affairs to a much greater degree than they now are. Formerly, there really was no "caregiver" role, until the patient had been discharged to go home, after which the caregiver's main responsibility was to watch the patient for signs of infections that needed to be nipped in the bud. But as transplants shifted more and more to being done outpatient, the caregivers awoke to discover themselves having to be 24/7 nurses for persons they thought they knew, but who were now rarely themselves, and not in good ways.

In some ways, our situation in Baltimore was nearly ideal. We had a very nice apartment in a building right across the street from the cancer center. If I was feeling so ill that even this seemed to be too far away, we could take one of the shuttle buses that ran hourly between the buildings. The apartment had its own refrigerator and cooking facilities, and its own clothes washer and drier. The main bedroom could be closed off from the rest of the apartment if necessary.

But for some time, Huong had trouble keeping me fed, no matter what she cooked, because of my growing nausea and mucositis. Nothing smelled or tasted good to me for awhile; or, even if it did, I would have trouble getting it down.

In addition to of course our clothing, we were responsible for laundering the bed linens. The machinery was of the stackable, small-volume type, meaning that Huong pretty much had to do at least some laundry daily, especially after my diarrhea began and then became progressively less controlled.

For awhile, the chemotherapy seemed to affect both my short-term memory and my ability to focus on the details of tasks. For example, the daily pilgrimage to the IPOP clinic involved getting myself fitted out with the necessary outerwear (hat, gloves, etc.), my surgical mask, and my cane, which seems slam-dunk easy; but for the first couple of weeks after the chemotherapy, I would occasionally forget one or another of the necessary items, not realizing that I was missing anything until we had reached the main lobby of the apartment building, or the sidewalk outside, thus requiring Huong to return to our room to fetch the item (requiring me to do this myself, while perhaps serving justice, would have taken too long).

But possibly the hardest part of Huong's job in Baltimore was simply grinding through the daily routine: repeatedly shoving the big, sick guy around to where he needed to go, more or less on time; making sure he wasn't run over crossing the busy intersection on the way to and from the cancer center; lugging the bag of medications and other stuff that we were supposed to take to the IPOP clinic each day; trying not to be overcome by boredom while awaiting my daily test results; asking the questions that I was too sick or too tired to ask; waiting in line for me at the pharmacy; flushing my catheter twice daily; wrapping up my catheter dressing for showers; and on and on.

If you had to pick the most important aspect of her involvement, though, you would choose the element of moral support. Holding me when I was under violent assault by the side-effects; firmly grasping my arm as we crossed the icy street; rounding up drinks for me when the nurses seemed too busy; presenting a reassuringly familiar presence when I was otherwise surrounded by strangers in the inpatient ward; walking alongside as I dragged my IV pole around the corridors for exercise; being a beacon of the normal in what often seemed a maelstrom of the abnormal. These seemingly simple things, combined, probably prevented me from disintegrating altogether at some point. As my moment of peering into the abyss begins to recede into the past, I'm pretty sure I will never find a way to repay her for them.