I’ve been swallowed up by learning how to Zoom teach while multi-tasking in a house with three kids and one Mark. It’s been hard to catch my breath, and when I feel compelled to write, my thoughts jump about like firecrackers in my head. I can’t settle on one topic. Mark’s health, our quarantine lifestyle, having the kids home all the time — two of whom are old enough to technically be adults yet young enough that I sometimes have to remind them they are not independent adults.
Mark. All things start and end with how Mark is doing. Mark is doing so very well. He reads! Every Sunday, we get the New York Times. About a month ago, he picked up his favorite starting place, the Sunday Review, put on his glasses, and started to read. “You’re going to read?” I said. I hadn’t seen him choose to read since last July. “Yes,” he said. Like it was nothing. And while my go-to is enthusiastic celebration of anything I can grasp as good, I met Mark where he was. Which I have learned to do, over the years with him. “Oh, okay. Cool.” And I picked up the Sunday Style section, my weekly entry into the paper, and we sat quietly drinking coffee and reading.
How did we get from Mark being a fairly non-responsive, non-interactive cancer patient, to this? One day at a time. After his radiation ended, he was a physical wreck. His face and neck were more lizard-like than not, he could not think straight, could not remember things, or hear, or see well. He couldn’t breath through his nose or mouth without making whistling and wheezing sounds. His mouth was too dry to swallow. The feeding tube kept him alive. Bobby carefully led him through any exercise that Mark could tolerate. I supervised Mark’s every move, from bed to bathroom to couch and back to bed.
Over the last month and a half, Mark’s slowly been getting stronger. His skin has healed. His face looks fuller. He uses a walker in the house. He’s got a problem with being a “little tippy” as I refer to it. Apparently, in our necks we have these cool nerve endings called barorecptors that send important messages to tell our body to not listen to gravity when we go from sitting to standing up, and to instead keep the blood pressure nice and stable in our skull. When you radiate those, they don’t work so well. So sometimes Mark can stand without incidence, sometimes he’s tippy, and sometimes he blacks out and topples right over. Note the gash on his forehead in the picture. That’s from a night last week when he sat up on the edge of the bed in the middle of the night, and before I could catch him he blacked out and fell off the bed, whacking his head on the bedstand. He woke right up. “Did I hit my head?” he asked. Blood streaming down his face. Um, yeah buddy, you did.
While Mark’s still skinny, too skinny, his weight is at worst stable and at best slowly creeping up. We have no house scale, so I judge by whether I can make a circle around his wrist with my thumb and pointer finger. I used to be able to, no problem. Now, I have to stretch. Mark still has his feeding tube, and we use it daily to supplement his calorie intake. It will have to be removed surgically at some point. It doesn’t bother him, and it doesn’t bother me, so it’s no rush.
I’ve felt very fortunate that the covid crisis has come at this point in Mark’s treatment. He has successfully avoided going to the hospital at all during the quarantine. Aside from the root canal he had to have today (poor guy), he has basically not left the house. We’re doing the full-on quarantine. The boys are not allowed to get together with friends. We don’t leave the house except to take a walk or to get groceries. He needed home health to come in for a couple weeks, for bloodwork and hydration, but that didn’t last long because eventually every time they stuck him they’d blow a vein. (And yes, it’s difficult to teach while hearing from the living room the nurse say, over and over, “I’m sorry! Is it okay if I try one more time?” Let alone the time that she didn’t have the right cap to switch from blood draw to IV, and Mark started bleeding all over the couch….but that’s a story for another day.)
Next week, however, is The Week. Scan Week. Three different hospitals, two scans, two doctor appointments. PET and CT scans will tell us what the chemo and radiation have accomplished. The radiation oncologist and Mark’s main oncologist will tell us what next steps may be. At one point, there was discussion of a surgery following the chem and radiation, depending on the success of those treatments. There continues to be a neurosurgeon and an ENT surgeon on Mark’s case as well. My biggest concern at the moment is making sure I can get into the appointments with Mark. The scheduling nurse told me to put Mark in a wheelchair whether he’s feeling like he needs it that morning or not, and tell the hospital security point that he’s mentally incapacitated and I have to accompany him. That sounds a little stressful to me. Him going in alone? I can’t imagine that would be a great idea.
We have no idea what life will look like in a week. We have no idea if covid will change any plans they may have had for Mark. In some ways, all the challenges that we’ve faced during Mark’s illness have set us up perfectly for all the uncertainty and fear that covid has brought. We were already afraid. We already knew, profoundly, that you can try to do everything “right” and still things may not go your way. We already mostly stayed home, and were in a constant state of alert about Mark’s health. We’ve had to do more, always more, but it’s alterations to a pattern of vigilance that had already been put in place.
Mark continues to be stoic. He will always be stoic. I ask him how he feels about the scans coming up, and he says, “Fine. There’s nothing I can do about it. It’s there or it’s not.” But lately at dinner, a few times in the past week, he takes his seat, makes the sign of the cross that he knows so well from his Catholic youth, closes his eyes for a few moments, and then crosses himself again. He’s in the foxhole, for sure. Aren’t we all right now?