Diary #17 (5-27-23)

The Cancer Diaries

Dad eating his glorious chocolate

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Three days have passed since my last entry on the 24^th. My last entry described my father’s “blackout” on Ativan and the subsequent “mini-seizures” etc. It was a ludicrous, bizarre, unlikely night.

A few things happened between then and now. First, and most crucially, the hospice doctor came to the house to be assured of Dad’s “competency” in regard to the Death Med (“aid-in-dying” medication to commit self-assisted legal suicide). The woman was in her mid-50s, tall, sharp-cheeked and very kind. She went over the basics about the medication and the legal and medical sides related to administration of it (Dad has to administer it to himself, via his peg-tube; my mother or I cannot give it to him). She felt assured of his mental acuity and he’s likely going to get the med Tuesday or Wednesday next week if all goes according to plan.

One thing of note that the doctor said was: Dad *is,* in fact, allowed to eat some food, despite his M.G. symptoms (lack of a full “functional” swallow) and despite what my mother has repeatedly said for weeks. (Another case of my mom acting as if she knows everything and being 100% wrong. How have I not learned this lesson yet?) The doctor also added that there are things they can do to make sure (almost certainly but not entirely) that Dad doesn’t get that “awful drowning feeling” when his breathing becomes even more difficult. (His breathing has been a bit of a struggle, on and off, for the past two weeks. We now have a new concentrator—mentioned on my last entry—which goes to 10% assistance, versus only 5% on the old one. But still: Even with this he may struggle eventually. Yet the doctor says this shouldn’t be a problem.

In addition, she suggested we order from hospice a Fentanyl patch for Dad which will be on his arm and will give him a slow release of soft warm anti-anxiety drugs. This on top of the “as-needed” Morphine. (Again, not for pain, but for breathing and physical discomfort and anxiety.) The doctor smiled and laughed a lot; she seemed very experienced. She asked Dad more questions and said we had a lovely house and then Mom walked her out. Now we’re just waiting on a zoom call with the oncologist as the second doctor assuring competency (or he can use the previous call Dad already had with him ten days ago, when Dad decided to terminate treatment, but that’s up to the oncologist), and then we get the med prescribed and finally I’ll drive down to CVS and pick it up. Evidently, due to its incredibly high toxicity—it is used to end a human being’s life—the CVS pharmacy actually shuts down entirely for part of the day because they don’t want any possibility of the medication powder mixing with any other medication. Call it a medical, sanitary and legal precaution. Yikes. Right?

After she left I asked Dad if he wanted to eat some ice cream. I’d been the one to ask the doctor if Dad could eat, despite Mom’s prior objections that he’d “choke.” When the doctor had answered shockingly (to us) in the affirmative, she’d suggested things like ice cream, baby food, etc. The moment the doctor left and Mom returned Dad said he wanted ice cream. The best we had were chocolate fudge bars. I walked down the hallway into the kitchen, opened the lower drawer freezer under the main fridge and plucked one out, tearing off its white plastic wrapper. For the first time in months I felt excited for Dad. What a treat! I brought it back with a napkin. Mom admonished him to eat slowly. Strangely, I felt like I was the father, the old man in bed my sick son. I felt proud. I beamed. He ate the thing slowly, licking it, biting off tiny chunks, swallowing, closing his eyes. I asked him if it was as good as he imagined it would be. He said it was better. It was glorious, he said.

That night the three of us played a podcast we’d started the night before and hadn’t finished: “The Unspeakable” podcast run by the journalist and brilliant writer Meghan Daum, whom I love. If you haven’t checked Daum out you don’t know what you’re missing: CLICK HERE. She was interviewing Sarah Hepola, another brilliant writer I admire, a woman who wrote a great Atlantic article about leftist self-censorship and who published a potent memoir about her alcoholism called, simply enough, Blackout. They were discussing Hepola’s first time teaching a bunch of 19-year-old students creative nonfiction, at a university in Texas, how the kids responded to her and her own writing, identity issues, rumors and gossip about authors from the past (like David Foster Wallace), etc. It was a fascinating, riveting conversation; even my father, most decidedly NOT a writer or creative person in any way, shape or form, cherished it.

The next morning I felt spent. I could tell my mom was wanting to be alone. I wanted to be alone, too. I’d been feeling sad and grieving, isolated and alone for the past week, both wanting and not wanting to be at my folks’ house, in Santa Barbara, in that environment. But I did no matter what want to be around Dad. I felt that intrinsically, like a savage need I couldn’t resist. But I was detaching more and more from my mom. We’d always been hard-pressed to survive emotionally around each other for more than a few days. A week was a lot for the two of us. This had been two very intense weeks with both of us under an intense amount of pressure. The past 22 months, we’d spent more time together, on and off, than we had in twenty-plus years, since I left home for the first time at 19.

I’d been escaping by reading Maya Angelou’s I Know Why the Caged Bird Sings, which is a brilliant, harsh indictment of white America, but also an incredibly raw, honest, nuanced book which I am still reading but am three-quarters of the way through. I’ve owned the book for maybe two years. I think I bought it somewhere in New York, but I’m only now finally reading it. The horrors she endures make me feel less alone. I may be white, male, upper middleclass and living in 2023, but that’s the brilliance of quality literature: Her story, though deeply specific, is also universal on so many levels.

Every day, I get up, make Irish Breakfast tea with half and half, read Angelou, check on Dad, say hi to Mom, make some eggs (I’ve lost some weight the past two weeks being “off bread”), then visit with Dad for a couple hours, and then write out at the outside glass-topped table on the deck overlooking the city and the ocean and Highway 101 and Santa Cruz Island. And then I visit again. Then walk the dogs, doing the 25-minute up-n-down “loop.” Then more visiting. Dinner in the room with Dad and Mom. Podcast. Bed. Say goodnight to Dad, always wondering if it might be for the last time. Downstairs, in my own bed, more Angelou. Some Substacking. And then lights out. Do it again the next day.

But that morning—yesterday morning—I felt the strain between me and Mom. We were both sensing it, feeling it. We needed space. I hadn’t been home in 14 days. I missed Britney, though she’d come several times over the past two weeks to visit and stay a night or two. I missed our animals—three cats and a Border Collie. I missed sharing the bed with my fiancée. And waking up next to her. And writing and reading alone after she left for work. Walking Franky, our dog. Listening to The 5^th Column, my favorite political podcast. Etc. I missed my space and my routine.

So Mom and I discussed it and agreed I’d go home for a few days. I felt uncertain and anxious about it. Frankly, I figured I’d stay in Santa Barbara until my father ended his life in a week or two from now and then I’d stay another week or two afterwards to help and grieve with my mom, and then I’d at last go home after all of that. It was a nice notion, like all fantasies it was bright and crisp and sharp; the lines all triangulated perfectly. But life so often doesn’t go the way you think it will. There’s always the unknown; the mysterious; the unexpected. The stick jabbed into the rolling wheel, forcing the whole cart upside down.

It’s the right time. Dad is relatively “stable” for the moment. We won’t get the Death Med until at least Tuesday or Wednesday, at best. He has said most recently (yesterday) that he does NOT plan to take it right away; at the moment he’s feeling “pretty good” and just wants the med as a backup option. The hospice doctor said that if we want a nurse or nurses to be present when he injects the med they need 48 hours. Dad and the two of us discussed this. We agreed that ideally we’d have two nurses present but out in the living room when Dad does the deed, but that, if he’s suddenly really suffering and wants to go then and there, we’ll skip the nurses and he’ll move forward. Fair enough.

Leaving Dad was very hard. It was emotional. It felt like leaving my newborn baby. What if something happened while I was gone?, I wondered. Mom reassured me this was unlikely. But then again: At the end of the day anything could happen at anytime. That’s just where we’re at. A friend of mine recently said (he’s lost both his parents) that I might not “be there” and that that’s ok if it goes down like that. I understand that, but if possible I’d like to be there.

Dad was sound asleep. Seeing the doctor had worn him out. I slowly gathered my things together—clothes, books, my laptop, some protein shakes. I walked down the steep wooden and then stone staircase outside to my car and loaded everything. Then I walked back up and went into Dad’s room, the so-called Death Room, as I call it. (Just seems honest.) I gently shook Dad’s shoulder, waking him. He opened his big blue eyes, the eyes that have been looking at me all my life. I took some air in, held it, sighed, and said, “Dad, I’m going to go home for a few days. Take a break. See Britney and the animals. I’ll be back on Monday night or Tuesday morning.”

“Ok,” he said, softly, clutching my hand with his, the brown thin mottled skin covered in black and purple bruises from all the IVs the past two years attacking his withered, ancient skin.

“I love you,” I said.

“I love you, too, Michael.”

I stood there a moment, taking that in. Then I let go of his hand. Mom and I hugged. “See you in a few days.”

I left, walking back down the stairs. I got into the car and headed out. Soon I was speeding north along Highway 101 towards Lompoc. I rolled the windows down, as has been my tradition for a long time, since my teen years, letting the harsh cool air blast the side of my face and my outstretched left arm. I felt my hand lazily against the cold metal of the Leaf. I didn’t think; I felt. Mostly I felt the array of emotions welling deep inside my core: The stretching confusion of division I sensed between fear and anxiety and sadness for leaving my father, mixed with the strange desire for him to go soon so he could feel peace and I could move on with my life, mixed with the other competing yearning for him to never die, to live 1,000 years, just so I could have one more moment with him.

I sighed, long and heavy and loud, the air zipping against my face and arm, the sunshine beaming down against my skin, and I knew in 45 minutes I’d be home.