Unless the Creek Rises

A few evenings ago, Mark and I sat quietly on the front porch, watching the world go by. The world being not a lot, in our quiet neighborhood. The wind stirred the leaves on the trees. A goldfinch swooped between the purple cone flowers and the white pine tree. A young girl walked down the street alone, carrying a swim towel and holding a pair of goggles.

“That’s a warm breeze,” I said. Mark said, “It is.” Sometimes, we remind me of Ma and Pa Ingalls out on the prairie, silent after a long day, waiting on night to fall.

Mark had had a follow-up appointment with an ENT surgeon earlier in the day. We had talked about each of our understandings of what had transpired, and at some point I used the present tense to refer to Mark’s cancer. “Had,” he said. “I had cancer. Unless the creek rises again.”

Mark has a quiet and quick wit. Layer that onto his quirkiness, and he’s gently entertaining to be around. In the past month, his himness has returned more and more. He is noticing the world around him. He is asking questions. “It’s nice to have you back,” I said. “Where have I been?” he replied. “I’m not sure,” I said, “but not here.”

Last Friday night, he said, “What’s on tap for the weekend?” That’s the first time I’ve heard him think ahead out loud, wonder, potentially plan. “Do you want to go out to dinner tomorrow night?” he asked. “Sure!” I said, not wanting to break the magic of the moment with a Covid-concern. Late in the afternoon the next day, I asked Mark if he remembered that he’d asked me to go to out to dinner with him that night. “No,” he said, “did I?” Well, it’s the thought that counts, even if the thought isn’t retained. And especially if the thought is actually ill-advised in the time of Covid.

Progressively since late spring, Mark has been doing incredibly well across many metrics, with the exception of his weight which is stable but low (127 lbs). He’s been out running (1/3rd of a mile) and walking (another mile) most days, and that’s been amazing to see. It’s also been a major adjustment for me to learn to let go again, to treat him like an independent adult and not like a dependent. The first few times he left the house to go out walking/running alone, I ended up driving around the block looking for him, like the dog had gotten loose. I am getting better at trusting that he will be okay, but it’s taken a lot to absorb that the guy-who-could-not-walk-room-to-room safely has become the-guy-who-waters-the-garden-alone. It probably doesn’t sound like much, but it for sure has been.

Mark’s feeding tube was removed just a couple weeks ago, which was not my favorite surprise procedure to witness. I had taken him to the Survivorship Clinic for head and neck cancer. The doctor, who we had never met before, surprised us by saying he thought it could go. When the feeding tube was placed in late January, I told the surgeon that I was worried Mark may try to pull it out on his own. She told me it’s very hard to remove, and it would be removed surgically. It therefore was a big surprise to have a doctor pull it out like a cork in an office visit, while casually explaining that it could take a number of days to seal up so to anticipate that when Mark drank something, like coffee, it might leak out of the hole.

I hadn’t been quite that close to the line between hysterically laughing and crying in a while.

On Tuesday, Mark had a follow-up appointment with the ENT surgeon who examined him last fall. Two residents crowded into the room with us. I adjusted my position so I could watch the video feed as the ENT scoped Mark’s nose. “THIS is what happens with severe radiation,” he said to the residents as he tunneled upwards, past things I will spare you from. Mark mostly can’t breathe out of his nose, and apparently that is due to two things: scar tissue and the fact that while the healthy human head makes one to two liters of saliva a day, the radiated human head makes about a half cup. (Yes, forever.) So things just aren’t flowing well. The ENT continued his journey up, and into view came the white plastic disk that is at the end of the line. This prosthetic is what seals the hole made by the cancer where it moved from his sinuses into his skull. This prosthetic bothers the ENT; it should be enclosed in Mark’s tissue and is instead exposed, creating a potential for infection. The ENT wanted to consult with neurosurgery.

Yesterday, I got a call from the ENT surgeon. He and the neurosurgeon want to do one surgery, together, in which they will clean out the scar tissue from Mark’s sinuses, remove the prosthetic at his skull base and graft tissue in its place. The skull work will be done by reopening his head where the original surgery last August took place. They estimate a six hour surgery, and would like to do it within the month.

I’m a tiny bit freaked out. I’ve liked having Mark back. It’s taken a lot to get him here. I’m not sure, but I’d think if you reopen his “forehead door” as my friend Kim referred to it, that his brain may prefer a little R & R period afterwards. When they installed his forehead door, the recovery period was very very long. This will be less difficult recovery, for sure, because the work is removing and patching a little thing, not a big thing like last time. And yet, it’s a surgery, a big one, and there will be knives and stitches and stints and brackets and nights where he’s there and, due to Covid, I will most definitely not be. They’ll biopsy the tissue they get, because why not, and so there’s that information to think about being at the other end of this as well.

I’d like to end with some swoop of hopefulness and positivity, or at least a dash of humor. But really, folks, this is a lot. Send your good vibes and prayers and thoughts our way. We’re in for a time again.