I started this post a month ago and then abandoned it as life got busier. A month ago, I wanted to write about how we can be scared of so many things. Some of them are legit, and some lay somewhere closer to absurd. In terms of living with our fears, the legitimacy of fears often is beyond the point. No, the mouse in the pantry is not going to hurt you. Yes, you may have a primal fear of it that is unmovable.

The first thing I did when I started this post was to gather up all those images. When Mark came home on his last day of radiation, the parting gift — the one we knew he’d get as a souvenir — was his radiation mask. For six weeks, five days each week, before the sun came up we’d drive Mark to the hospital and head down into the basement to radiology. We’d sit in chairs arranged nicely into little privacy pods and watch Good Morning America until he was called. The technician would walk carefully beside Mark, keeping a hand behind his back in case he became unsteady on his feet, which he often did. They’d disappear from my view for 10 minutes, and then Mark would be returned to me.

Day to day, the radiation treatments were completely invisible to me. Intellectually, I knew what was happening. They lay Mark on the table, put his mask on, locked it to the table, and began. They were delivering a doozy of a beam of energy right at the tumor, working their way via 3D imaging around the blasted thing, wiping out whatever biological tissue was in its path to get there, clearing a larger swath than needed to make sure the target was eliminated. I never saw any part of this process other than the waiting room.

It took almost four weeks for there to be a notable impact on Mark’s daily living. His skin drying, changing color. His salivary glands useless. His breathing increasingly noisy. Destruction meant potential success. Mark tolerated it without complaint.

When Mark brought the mask home, it took my breath away. I hadn’t imagined it to be so large. I hadn’t imagined the hole in the middle. It was just so…real. And scary. A physical manifestation of the cancer I fear. A physical manifestation of the radiation that in many ways I feared, too.

I dealt with my fear the way I often do — by exploring it. I tried the mask on. Alma tried it on. I took photos of it. I messed around with the photos. I recorded an audio track of Mark’s noisy breathing, and I overlaid it on a video of Alma wearing the mask (very spooky). I understood what I was doing: I was working to disarm the fear by facing it head on. Not everyone does that. I know that. It’s in my instinct to do it, and it works for me.

As I write, I am sitting in bed listening to Mark breath. If he gets quiet, I sometimes will watch to make sure the covers are still rising and falling. I’m up early, because an hour ago I awoke to him walking over to the bathroom rather than using the bedside commode. I watched him get to the bathroom door, start to open it, start to sway and tip as he clutched the door frame. I made it to him just in time to catch him as he fell straight back. I guided him down onto the carpet until it was safe for him to get back up, go to the toilet, and then back to bed.

We all have to figure out how to manage our fears. Meditation apps, yoga, walking for some. Binging on Netflix shows. Praying. Calling friends. Cleaning. Cooking. Avoidance. Learning. There’s no right or wrong to any of it. We all just have to keep doing our best. Finding a way. I think we can.

Golden Rule

I am posting this as someone who’d been casually following coronavirus and then quietly doing some preparing and now like everyone else is getting to the rather worried state.

I am posting this as someone who’s been working so hard to keep Mark alive. Mark is medically very fragile. Yes, he’s doing better. He also weighs about as much as a feather and is still recovering from brutal radiation and chemo treatment.

So hey, check out the data. If you can follow the guidelines that we are all hearing, that would be great. I’d appreciate it. If you need help with ideas for how to enjoy life while self-isolating, I’m pretty much a pro at it now.

I started back to work…

Mark at Aldi’s today.

….and the time and energy to write disappeared. Here’s a quick update, minus creativity. Mark is home. The amount that he’s changed over the last three weeks is incredible. Three weeks ago, he could not spell the word “world” backwards. Two weeks ago, I watched him lean over to zip up his winter jacket and was amazed to see that he could do it. Today, I watched him write down a note about his breakfast intake, and he correctly remembered the day of the week — Saturday. He is thin and tired and also so much stronger as his body and brain recover from a brutal treatment protocol that seemed, without exaggeration, like it almost killed him.

A fairly comfortable daily pattern has evolved. Bobby arrives by 6:45 every morning and off I go. Bobby rotates through and exercise plan that he creates for Mark everyday: resistance bands, free weights, stairs, balance exercises, mental exercises like playing cards. Bobby exhibits beautiful intuitiveness about when to nudge Mark to do more or back off and let him rest with a “you’re the boss. I’m your friend. I’m not here to hurt you, I’m here to help you.” He makes sure Mark stays hydrated. He gives Mark feedings through his feeding tube as needed, and eats breakfast and lunch alongside Mark. In the afternoons, Bobby stays until a friend or my parents come over, or until I come home. I make dinner for the family. Mark and I watch Jeopardy. I give Mark a feeding through the feeding tube. A “bolus,” it’s called, but Mark somehow can’t hold onto that word and keeps calling it a “botus.” Beverage Of The United States? I set up his meds for the next day, we count his daily calories to see if he’s hit the minimum of 2000 (he’s really good at only hitting 1700-1800), and I go over the next day’s schedule with him, which he writes on a tabletop white board so he can refer to it the next day. I walk him back to the bedroom by 8pm and make sure the bedside commode is clean and that he’s safely in bed. I’m usually not that far behind him in calling it a day.

Mark’s brain is much more online than it’s been since about last June. This is a blessing, of course. It also means that Mark is really experiencing his illness, cognitively, for the first time. I ask him what he’s thinking about as he stares off into the distance, and more often now he’ll say “the possibilities of my life” or “mortality.” He lost his balance on Wednesday and got a little gash over his eye; this super scared him, even though Bobby was right there and caught him on the way down. Mark had been starting to push against the need to have someone with him at all times. But after the fall, Mark didn’t want to leave the house because he was newly alert to how his legs can feel weak and give out at anytime. Let alone the potential for seizures (which he still has periodically). He started using his walker to get to the bathroom or the bedroom or the kitchen.

I have continued to get calls, so many calls, about his care. Nurses, insurance, PT, OT, and speech. Two evenings ago a nurse called to check on him. We went over the equipment we have and don’t have. I thought we had it all: a wheelchair, the bedside commode, a blood pressure guage, feeding tube supplies, pill organizers, a regular standing-only walker and, arriving soon, a walker with a seat. “You don’t have a hospital bed,” she pointed out. Not there yet, I said.

Today, we had our first outing with the wheelchair. Mark wanted to go to Aldi with me; it was his idea to bring the chair. We maneuvered through the store successfully, equipped with a shopping cart, a wheelchair, a just-in-case a vomit bag and a bottle of seizure-stopping medication. A tiny stressful for me as I pushed the loaded cart while he foot-paddled his way down the slight incline to the parked car. We came home and took a long nap.

Mark’s treatments are finished for now. We are in a time period of healing and recovering. His Big Scan will be in mid-April. It will tell us all we need to know, we hope, about the efficacy of the treatment. A fork in the road. Another one.

I woke up early today to drive Matthew to the high school for a speech and debate tournament. Then Mark and I had coffee on the couch while I finished my latest murder mystery novel (I’m in a rut) and he read last week’s NYT Sunday Review, the news so dated after this week’s massive coronavirus scare and the shrinking of the Dem primary pool. I watched him read, stunned that he had the vision, cognitive capacity, and energy to read multiple articles. The changes keep coming, and some days — despite all we’ve been through — I find myself thinking it’s going to just continue to be a steady improvement. Bobby reminds me that this is just like in AA and NA recovery: “Sometimes it’s three steps forward, a half step back, Di.”

Today at breakfast I said to Mark, “how’s your nausea?” “Am I an alligator?” he said, repeating what he thought he had heard. “Did you really think that’s what I asked?” I laughed. “Yes,” he said.

That’s my husband, ya’ll. If you look at the photo, you will see he has taken out his wallet so he can pay. Because that’s the kind of man he is, the guy who wants to take care of me.

What is marriage? What is a partnership? For better or for worse. For richer or for poorer. In sickness and in health.

I’ve got this. I’ve got him.