Fishy Forts and Paper Ducks

“Do you want to stop at the chicken store?” Mark asked. We were on our way home from a half-day of hospital appointments. Driving home, I often try to tempt Mark into going through the Chick-Fil-A drive-thru to turbo-charge him with the kind of high calorie meal that he so desperately needs. On the days that he says yes, we always get the same thing. Two chicken sandwiches, two orders of fries, a soda. I know that organic berries, kale, and fresh fish would be better. But with the deficit he’s at and his unwillingness to vary from his ramen-for breakfast, ramen-for-lunch brain pathway, any calories are better than no calories. Currently maintaining at a crisp 133 lbs, Mark’s eating is one of my daily projects. I get his calories in wherever I can. Specially concocted cream-based soups. Discrete drops of olive oil snuck into his ramen.

It was two days before Thanksgiving. Three of our kids were coming home from afar, having taken Covid tests, gotten flu shots, agreed to wearing masks inside the house and keeping our living room windows open. Added to this stress, we had driven to the hospital, the location of all Mark’s medical appointments. Parked. Passed seamlessly through the tiny no-fever effort at screening. I donned the purple wristband that designates me as Marks’ one allowed support person. We boarded the escalator, my hand at Mark’s back in case he lost his balance. Chose seats as far away from others as possible in the waiting room. When they called his name, I walked with him to the waiting MRI technician. “Please return him here, to me, in the waiting room,” I said. “Last time, they let him out a different door and he could not find me.” Yes, she said, no problem. I settled in to wait. When someone sat too near me, or coughed, I moved to another seat. Three seats and an hour later, I was staring through the waiting room windows when through the glass, I spotted Mark. Wandering in the hospital hallway. I ran out and grabbed his hand, tugged him back with me to the registration desk. Took a deep breath. This is the second time, I said. It makes me angry, I said. It’s a safety issue, I said. “I’ll call MRI right now and tell them,” the receptionist said, picking up her phone. I guided Mark to the elevator and his next appointment.

At the ENT office, a resident I’ve met three times before introduced herself again. I like this one. I remember her among the flotilla of young doctors rounding on Mark in August when he was in the ICU. She had been prepared. She could answer the attending’s questions. Today, she bravely yet cautiously scoped Mark’s nose. I silently rooted for her. She appeared to be someone who had enough training to give it a go, and also enough training to know what she didn’t know. She cleaned only the safest areas far away from the graft. I continued my quest to understand the anatomy of the skull, realizing that I was seeing the top of Mark’s trachea, the bottom of his skull, and the top of his palate, all in the single nose-cave she was exploring. She answered my questions patiently. When the surgeon came in, he took over and delicately poked the graft. Not better, not worse. Good enough for today. Come back in a month.

One more appointment. Up the elevator to the neurosurgeon’s office. We were led into an examination room we’ve been in before. Tired, we sat staring at a piece of art that we’ve stared at before. I believe the artist was going for peaceful, but somehow the lifelessness of the scene depresses me. Last time, we had talked about it needing birds, something. This time, I dug through my purse looking for resources. A pen. A used Post-it note. I added my art to the painting. Now we sat staring at my paper duck, tucked into the rushes. Waiting with us.

A gentle knock on the door, and the surgical fellow breezed in. Both the fellow and the neurosurgeon invariably are impeccably and similarly dressed, but the fellow is perhaps at the 2K-suit level while the neurosurgeon is more in the 4K-suit range. 2K had looked at the MRI results and reported that Mark has a new area of necrosis. He pulled up the MRI. I stared at the white blobs. Eyeballs, dead spot. The whole left hemisphere swelling. 2K said there’s only two treatment options: surgery or a combination of steroids and chemotherapy. And that because Mark’s forehead door has been opened so much already, surgery was the least favorable option. Leaving steroids and chemotherapy. I was confused. Chemotherapy to kill a spot of dead cells? No, he explained, the cells are actively dying. If they can get them to die faster, then the secondary problem of his brain swelling in reaction to the dying process will end more quickly. Then it will just be dead, rather than a dying dead spot. Which will eventually become a cyst. He was confident this was the best plan. Mark would likely be sent back to oncology for treatment. There would be side effects, of course. “It will make his brain more brittle,” making any potential future surgery more difficult.

He left us with that. We stared at our paper duck. When 4K came in, he immediately said that 2K didn’t realize that the results of the scan from this morning matched Mark’s last scan from three weeks ago. In fact, the necrotic spot was the same size. Not better, not worse. Good enough for today. Treating the problem with chemo won’t work, because the chemo would threaten the healing of Mark’s graft. The two medications 4K had prescribed Mark in early November, one of which is straight up Vitamin E, are doing their job. “It’s like his brain is on fire, and the medications are cooling it down.” The process of his brain cooling down, the brain swelling going down, being able to see what it’s like for Mark to have a brain not on fire and not swollen, could take a year. And then the damage will be done getting done. And then we will know what his cognition level is like without swelling compounding the problems. “We’re between a rock and a hard place,” 2K said when he reappeared. The only way through is through.

This morning I posted to my most recent Facebook community, the Early-onset Alzheimer’s Support Group. Mark had emerged from the bathroom a couple nights ago having cut his own hair. I needed help. I needed a shoulder. I needed wisdom.

He won’t let me fix it. I don’t know why this moment really struck a blow to my head and heart, but it did. Maybe it’s something about denial. That while I know something is not connecting in his brain-on-fire, I often can live in my days without feeling submerged in that knowledge. Subsumed by it. Drowning in it. With this visual reminder, it’s just so very painful. I feel swallowed up whole in sadness when I look at him. The Facebook community is helpful. My loved one did this, too, they say. Leave it alone. Praise his effort. Hide the scissors. Childproof the house. “It’s just hair and the beginning of a million moments like this.”

It’s the last comment that epitomizes the pain. Yes, it’s just hair. 999,999 more moments like this? In moments of downward spiral in my monkey-mind, I think and think and cannot solve this puzzle. How many bubble baths, walks in the woods, and cups of coffee will I need to keep me sane through this? There’s not enough respite hours, enough sunlight, enough Netflix, I worry. The two books I bought, Alzheimer’s and Dementia for Dummies and The 36 Hour Day, are excellent and also are information overload. I entertain myself by revisiting my blog post titles, in my mind adding “During a Pandemic” to each. “Dumb Hard During a Pandemic.” “Calculating Gratitude During a Pandemic.” And then I realize I am not entertaining myself, I am furiously doggy-paddling in a very, very deep pool.

All I can do is to keep looking for the humor. One thing that is funny? Everything I just wrote happened within the past week. One week. Seven days. A comedian could find the humor in that. Me? I keep trying to find the lightest, slightest breezes of humor that brush my cheek and remind me that I am alive, that this is still a life.

After Thanksgiving dinner, our family played Scattergories. This was the first time we’ve played in a long time, and Mark was game.

Giving him every point he could get, he did well. Positives: he was playing, and he was working to maximize points by giving multiple word answers. Negatives: they didn’t always make sense.

The neurosurgeon, at the end of the appointment during which he primarily had spoken to me, finally turned to Mark. “How are you feeling?” he asked. “Good,” Mark said pleasantly. 4K turned back to me. “Unfortunately, this will mostly be hard on you.”

How hard can a fishy fort be on me? It depends on the day. It depends on the hour. Sometimes fishy forts are funny (3 pts). Sometimes, fishy forts are a reminder that I have arrived at a very strange threshold. The place is not fully unfamiliar. Adding a harmless paper duck to a piece of art in a doctor’s office is certainly something I might have done to entertain my kids when they were little. I can employ my mothering skills. My teacher skills. My wife skills. It’s the weaving together of these roles in some mysterious balance, which also must include me being my own caregiver, that is intimidating. Overwhelming. During a Pandemic.

And yet. We move on. Last week, pulling out of the Chick-Fil-A parking lot with our sandwiches and fries, I asked Mark for a straw. Mark looked perplexed. “A trial?” No, a straw. “A frog?” A STRAW. “Oh, a straw,” he said, peering back into the bag. I pictured a frog on trial, sitting in a courtroom, casually chewing on a straw. I smiled.