My Notes

Over time, I have gotten better at retaining all the things doctors and nurses and aids and therapists tell me. At every new or unusual juncture, though, I rely on notes to help me scramble up to the new level of understanding needed to manage. Then, I rely on notepads and my phone. I scribble down new words to look up. New procedures. Things to remember. Things to ask.

Today I opened my Notes app and read the following, typed two weeks ago:

staphylococcus aureus

stenotrophomonas maltophilia

haemophilus influenzae

polymicrobial

anaerobic pending

Do you want to lay back? “Do I want any bats?”

That last note I took on Day Five of Mark’s inpatient stay after his recent craniotomy. He was sitting propped up in bed, having just eaten lunch. The part of his skull that was missing was staring me in the face. I was eating cafeteria sushi in my chair. “Do you want to lay back?” I asked him. I was approximately five feet from him. “Do I want any bats?” he asked, repeating what he had heard, in his predictably unironic manner.

I carefully suppressed the laugh I so wanted to belt out. It would have helped me. I also could have started to cry. That would have helped me, too.

This particular surgery and inpatient stay of Mark’s was manageable, in practice. I got through each day taking care of “myself and each other,” as Lester Holt reminds us to do nightly on broadcast news. I found enough time to be with Mark, to interact with the medical team, to get home and eat with the kids, relax on the couch, and sleep. I talked to friends and paced myself with my time at the hospital and bedside. I did all the things I could to be kind to myself and everyone I care for day to day.

And yet.

Two days after I brought Mark home, I went right over the caregiver ledge. I had thought I was doing just fine. Hanging on in another hard time. I had done it before. I could do it again. But there was something about this one. The cumulative effect of it all? The pandemic? The isolation? The brutality of this surgery? The marks on Mark’s belly and thigh where they had prepared to harvest tissue, had it been needed, for repairing the graft? The PICC line he came home with that pours the magic survival-juice out near his heart? The reality that his body is being used to replace other parts of his body, like a biological scrapyard?

Okay, maybe you get why I tipped right over the “I’m fine” edge.

I had thought I was doing fine, all the way until I wasn’t. I literally fell off the caregiver cliff, hard. I spun out. I freaked out. I fussed and fretted and despaired. And then I spent last week recovering. I slept a lot. I bought and wrote in journals. Gratitude. Self-care. I reconnected with my therapist. “You are grieving,” she said. “I am?” I sputtered. I had no idea. I trust that she’s been paying attention for the last three years I’ve worked with her. “This is not the life you had planned,” she said.

I mean, she has a point.

And yet. It’s all going well, right? Mark is doing so well. This is the one year anniversary of him finishing chemo and radiation. He has had no recurrence of cancer, and that is for sure Great News. “Is he in remission?” I ask the doctors. “Not yet,” they say kindly. “Are we out of the woods yet?” I asked the neurosurgeon yesterday. “We are no longer in the middle of the woods,” he replied. “We are on the edge of the woods. We will be there for the next six to twelve months.”

Okay.

What is time anymore, anyway?

As the surgeon spoke those words, in front of Mark and me and behind the surgeon, was one of the many framed prints that are in the neurosurgery examination rooms. They are all lovely landscapes that, strangely to me, have plants but no animals. During the two hour wait for the neurosurgeon, while Mark napped on the examination table, I retrieved the stickers my friend had mailed to me for just this occasion. I added four living things to the slightly lifeless landscape.

• 

This is how important it is to find agency in a life that is so very far beyond your control. Four removable vinyl stickers made me very, very happy as the doctor removed the sutures from the ear-to-ear incision in Mark’s head. And I hope the next person waiting in this stressful room notices them, and that they give them a smile.

“Let me know if more red spots show up on his head,” the neurosurgeon said. Thanks, I thought. I did back in December, and it took until my third time alerting you in January for you to realize his forehead bone was infected. And now it’s gone. And now he’s on six weeks of IV antibiotics at home. But for sure, I’ll be the first to let you know.

Back to my Notes app. The final note from Day Five was this: “Doc by the elevators.” While visiting Mark, I took a break to go to the cafeteria. Near the elevator bays, a young male doctor was speaking quietly into his cellphone. His tone was frustrated, and the topic seemed to be a car purchase that somehow went south. With careful words, he was explaining that he had been very polite up until now, but he could not tolerate the situation any longer. The elevators doors opened. I went up to the 11th floor, bought some snacks, and headed back down. When the elevator doors opened and I exited back onto the neuro floor, the doctor was finishing his phone call. “Is there someone I can speak to?” he asked. “A manager? I would like to document my sorrow.”

Me too, I thought. I’d like to document my sorrow.

Mark is home now. His pathology shows that he needs to stay on an aggressive antibiotic regime. The infection had gotten into his skull bone, into good tissue. Even though one of the medications can cause seizures, and in fact I have observed some seizure behavior, it is the best course of action given the severity of the problem.

He is often so good these days that I have to remind myself that he just had a craniotomy less two weeks ago. He needs to nap a lot. He sits and watches the squirrels digging for buried treasure in the yard. At night, I gently wash his healing incision while we watch Jeopardy.

Tonight I asked him if I could touch his forehead. He said it was sensitive, and he guided my finger to just part of it. It felt soft and warm. If you run your finger up your nose to the bridge, right before your eyebrow, that is where Mark’s skull bone stops.

It’s like leaping off a cliff, out into the unknown. No bone, just a wide gap of soft tissue, leading you from here. To there.

There is a there.

That’s where you land.

Onward.