I haven’t written much lately because I’ve been launching things and redesigning things and consulting on things. I’m one of those pandemic busy bodies — I’ve been staying productive and occupied with other work; writing is too much of a deep dive, a pause, an opening. I worry if I open too much I will fall right down deep in that hole. But here I am. Let’s fall.
It’s been five years, as of today, that my chemotherapy treatment for ovarian cancer was finito. Back in 2016, my head was bald, save for a few sprigs of fine, downy hair, I had next to zero energy, an infected toe, and had been jabbing myself twice daily with blood thinners to address a related blood clot.
For the last five years I have been in a phase called “survivorship” — a term that sounds odd to me, as if it’s something you study or plan for, except that it names a situation that’s pretty much entirely out of your control. The doctors, nurses, social workers, physiatrists hand you materials, and sign you up for classes with a loose course of action: how to eat, exercise, monitor yourself, be safe in certain scenarios. You’re left on your own to figure out how to abide by the things that remain, like that neuropathy in your big toe. But even if the cells are removed, the specter of cancer sits next to you, informing choices you make and the way you live your life. (Or it should. I’ve not been the most compliant patient — especially during the pandemic when DoorDash comfort food reigned supreme.)
In survivorship there is no “after.” It doesn’t end. It’s a lifetime of vigilance.
For two years after treatment, I saw my cancer doctor every three months, and then every six months and then, if everything was okay at five years, I wouldn’t need to see her again. EVER. The five-year mark is sort of an agreed upon cancer “graduation.”
So, it’s now March 23, 2021. I have a full head of white hair (which, hey, I embraced before all of y’all did the pandemic grays), my toes are fine (if in desperate need of a pedicure) and, well, I still have to wear goofy compression socks, but it’s a small price to pay. I am undoubtedly, too, a different, stronger person than I was in 2016.
I am here.
In these ensuing years, my good friend Nancy, who also had ovarian cancer, passed away. My friends Violet and Natalie died of breast and colon cancers. And I’m still here. I have friends who continue their treatment, take drugs, and have had recurring bouts. And I am okay. The guilt and fear of recurrence is real — it looms and lurks and gets triggered by things like cancer commercials or seeing someone in a head wrap. But I have many more days where I forget about cancer entirely. Like this past Saturday: Sitting in a little COVID-cabana with my friend Dori, having margaritas and talking about travelling (finally) and her kids and our plans … five years feels like forever ago.
I’ve waited for this milestone for what feels like a long time. It does not feel like just yesterday. I’ve forgotten a lot of the details from treatment, the intricacies of suffering. Scenes are muddled and gray. Not for my husband though, who watched every minute and held me in my darkest moments. Perhaps there’s a mechanism in our mind that protects us and keep us moving forward by creating blurred memories.
My final appointment with my oncologist was last month in April. I’d made sure to drink pitchers of water the night before and that morning; I’m a “tough stick” as the nurses would say, so I wanted to make sure I was hydrated enough so my veins would pop and the jabbing would be minimal. The worst time was back in 2016 when four different nurses took a turn trying to find my weary, lifeless veins while I audibly whimpered. I can hardly think back on those moments — I was like a different person, crumpled and crushed by the drugs, barely able to walk a block down the street.
My husband wanted to join me for my last appointment, and I wanted him there. We tried to get a Lyft, but it was a 15-minute wait. I looked him straight in the eye and said firmly, “I want to take the subway.” Normally not a big deal, of course, but this was still the pandemic and, while both of us were fully vaccinated, neither one of us had been on a subway in over a year. The gritty, rumbling subway somehow felt right exactly because we’d been holed up in our home for so long, and because I wanted to feel my muscles working to get me there and back — to walk up and down stairs that were — at one time — challenging.
For this final appointment, Dr. Boyd and I were both masked; she was wearing one of those plastic shields that made her look more welder than doctor. This time, she set me free. Entirely.
“You don’t need to see me anymore,” she said, scribbling down some names of regular old gynecologists.
“Not at all?”
“Not at all. I mean, you can always come back if you need to but…”
She saw me wince.
“But you’re all good.”
I don’t particularly like the idea of never seeing Dr. Boyd again.
Perhaps I could just show up and she could poke around a little every so often?
No. Nope. Time to say goodbye.
“Hey, we’re not really supposed to do this,” she said. “But can I give you a hug?”
I sighed, “of course!” and wrapped my arms around her. She was the first person I’d hugged in a year other than my husband. And boy was she the right first person.
The next morning, I looked at the list of gynecologists she’d given me and sent Dr. Boyd one of those patient portal messages asking her which one she’d really recommend. And I asked her, half-jokingly with a smiley face, “Are you sure we’re all done here :-)?”
Now we all are asking ourselves: “Are we sure?” Sure that it’s okay to step outside, eat inside a restaurant, take off the mask.
When the home treatment for my blood clot ended, which was two daily self-injections of blood thinners, I spent about a week with a strange desire to jab myself in the stomach even though I’d served my six month prescription. One day you’re giving yourself shots twice a day, the next you’re not. One day you’re wearing a mask to protect yourself from COVID, the next you’re not. It feels almost arbitrary and there’s a reluctance to let go.
With COVID, we’re emerging from this way of life after a year with cautious joy. It’s a brilliant feeling to walk my dog in the mornings and feel a breeze on my face, but I might throw my mask back on once in a while.
I think about those oddly lighter early April-ish 2020 days of COVID: Instagram workouts, standing in line for toilet paper, clapping for essential workers, or my husband and I giving different parts of our apartment corporate conference room names (the bedroom was Santa Monica, the kitchen table was Charleston, the couch was Kennebunkport) in order to devise some structure and sanity — and humor — to our strange work-from-home world.
As we acclimated and adjusted to life inside, things got harder as loved ones got sick, we feared for our own lives and everything became grim. We were all quietly terrified and fighting for our lives, our families lives. My husband’s elderly cousin passed away from complications due to COVID. It got worse before it got a lot better. Cancer was the same — the effects of the treatment were cumulative. To get better, it had to get a lot worse.
I remember thinking early summer, 2020: “I’ve been here before. I’ve trained for this.” I’d been in the middle of something that felt unknowable, unmanageable and had to rely on doctors, science and all the other people who had been there before.
And now, as we step gingerly into a new, post-pandemic world, we need a post-pandemic plan. Perhaps a COVID-survivorship plan — one that combines a mix of scientific fact, routine and a little faith.
“But what if it comes back?” is the refrain every cancer survivor hears in their head regularly. We’ve been through it once, we could go through it again. There’s a vulnerability we feel about walking around, potentially carrying — or being exposed to — an unseen collection of killers.
We don’t have a safety net post-COVID, but we’ve learned something about getting ourselves through trauma. We can roll with it. We can adjust our lives. We can deal with the after effects. We can. And if it comes back, we’ll figure out how to deal with it then. So much is also out of our hands, but still, we do our very best. We’re survivors — and now we’re together.