“That Platypus though,” says Springs before we get off the phone. “He’s his own man, isn’t he. He’s doing just fine.” Surprises.
The long game remains a little hazy. Other than radiation, there aren’t a lot of other treatment options available, although this landscape is always changing. The big hot thing in breast cancer (and many cancers) right now is immunotherapy, but it is still largely only available through clinical trials (unless, as Dr. Cavanaugh suggested, I wanted to donate a building to Duke Hospital or something).
I am not eligible for any of the trials yet, unfortunately, because I have to fail a round of postmetastasis chemotherapy in order to qualify. That’s fine, but the problem is that Dr. Cavanaugh feels strongly that it is my immune system that is keeping the cancer from taking off like wildfire right now, and more chemo that is unlikely to do anything will only deplete my immune system.
“Couldn’t you just pretend to take the chemo pills—if it’s just to make you eligible for the trial? How would they ever know?” asks my dad.
I’m thrilled at the idea of this small act of rebellion.
Even still: All of the US-based immunotherapy trials are still currently randomized and blind, which means you only have a one-out-of-three chance of getting the actual drug and not the placebo.
The shorter game: The dogs still haven’t quite settled down. John should be home with the boys sometime midafternoon. MacDuff is on alert at the front door—barking at every Saturday morning lawnmower that growls on, every weed whacker, every bike wheel that tick-ticks by.
Ellie is lying at the foot of the bed. She can no longer hear or see very well. But if she feels me roll over in the bed she’s up standing at attention in a split second, staring at me. “What are we doing,” she implores. “What’s next?”
“I have no idea, you crazy girl,” I tell her, patting her head. “Let’s wait and see.”
15. The List
John is a superstar dad, but now I keep a running list on my phone of the things I’m worried no one will teach my kids: table manners, how to play Scrabble without getting in a fight, long division, how to pack light, how to find the orange juice in the refrigerator.
“Let’s say aloud all the people who could help Dad take care of us,” says Freddy one night when I am tucking them both into the bottom of their bunk bed.
They still prefer to sleep together.
We make a list.
“Man, that’s more than I can fit on both hands,” says Benny with an enormous grin on his face.
Freddy reaches toward me for a hug and says nothing.
16. Jump Around
I pick up John during his lunch hour so we can go on a date to the medical supply store to buy me a cane. With the tumors in my hips and pelvis, I’m having a harder time getting around. John tries to talk me into one that is camouflaged for duck hunting and another that is clearly from some Lord of the Rings fantasy he had back in middle school, but I choose a dark blue one with a comfy rubber grip and a floral pattern that looks like bathroom wallpaper from the 1960s. I’m pretending that I’m starting a hip new craze that people don’t even know about yet—like vaping or lumberjack beards or bone broth. Canes: the new frontier in walking. Like walking only better. Extra virgin, cold-pressed walking.
Two days after I get the cane, John, Tita, Drew, and I go see Grandmaster Flash in a concert that starts after 9:00 p.m. and is held in a huge parking lot downtown. We are neither the oldest nor the youngest by far. Flash himself is two years shy of sixty. We dance and get bumped around by the crowd for an hour and a half. I use the cane for an extra boost off the ground when he mixes in “Jump Around.”
The next day I can’t get out of bed and I have to double my fentanyl. I resign myself to the bigger-size patch. Once I go up in the fentanyl dose, it seems I never go down.
17. The Hit Woman
One night I have a dream I am being stalked by a hit man—or a hit woman, rather. She has a badge and is dressed like a lawyer, although slightly disheveled and with a French accent. She has been following me for days when I finally turn around and confront her.
“Look. You don’t have to do this. It’s not etched in stone,” I say.
“I’m sorry,” she says, holding her gun inside her suit jacket. “I do. It’s my job.”
“Please,” I keep saying to her. “I have kids. They are little. And they need me. Can you give me just a few more years? I promise to go nicely if you can let me have a few extra years with them.”
In the dream, I cry in a way I have never cried before. I am hysterical. The situation is too cruel. This is the saddest thing I have ever imagined.
“We will see,” she says, shrugging and walking away. “I will see what I can do.”
I tell John about the dream when we wake up.
“Oh my God,” he deadpans, pulling me close, hugging me. “Imagine if something like that were actually happening to you.”
I punch his arm. All day I am haunted by what I am unable to feel.
18. Adult Supervision
Would you believe me if I told you that around the same time that Ginny’s cancer spread, a second scooter started showing up at the Embers Motor Lodge, sharing a space in the empty parking lot with the first one? A couple times they’ve both been gone at once, but usually at least one of them is there. One has a cover; the other is left exposed to the elements.
Ginny’s lung metastases make her eligible for immunotherapy because the tumors can be biopsied and measured more precisely than mine. She’s been looking for a clinical trial, and it seems there is a really good option at UNC. But even after signing a thousand consent forms and having painful bronchoscopies and long days of lab work, there is still an epic waiting period to find out if you qualify. They have to send part of Ginny’s tumor to Europe. And apparently some European bureaucrat has been holding things up—or at least that’s what the trial coordinator at UNC says.
The days pass—a couple weeks. In cancer time, that feels like years, decades—like the remaining days of your life are soaring by on a busy interstate.
“Still no word on the trial of course,” Ginny texts one night. “I did two shots of vodka and then got into bed.”
“What matters is that you’re taking care of the important things,” I text back. It’s not yet 8:00 p.m. and I’m in bed myself.
She tells me she’s started thinking about taping lectures to her kids as future teenagers that her sister could email to them when the time is appropriate.
To her son, who is the same age as Freddy: “Keep it in your pants unless you are alone in the privacy of your own room or your own shower, and do not make your aunt clean up stiff/crunchy socks from around your room. It is perfectly fine to jerk off. Just be polite about it.”
She assures me I can borrow that one if I want.