“With cancer, it is rarely a matter of either-or; there is seldom a choice between hope and despair. Patients face both simultaneously, or serially.”- Azra Raza, The First Cell
How much can a heart take, figuratively but also literally?
This is a question that has floated up to me through the fog over and over again during this whole ordeal, and I think it’s very much tied to doubt. How to protect that which is most vital? And how and when to let go? As my first PET scan since treatment started approaches, the scan that will tell me if my cancer is responding or not, doubt goes kerplunk! in my mind. What new choices, new heartbreaks, new hope (?) am I racing toward?
Somewhere along the way a nurse told me that it’s common for cancer patients to go back and forth on decisions, especially since there is so much to navigate and so many options to consider, and so many different people telling you what the right choices are, each person often contradicting the next, and absolutely no guarantees. In the end, it really comes down to you, standing amidst the clutter and the chaos, wondering who to trust but knowing you have to move one way or another, and that there’s very little room for error.
When I had a horrible experience with my first oncologist, I wondered, should I get a second opinion, and how will I find the energy to do so? Will the delay in finding a new oncologist cost me my life? Can I even afford a second opinion? Will another oncologist take on an uninsured patient? And is it already too late? I did end up getting a second opinion, and I don’t think I’d be here if I hadn’t. That’s what’s at stake.
And I had even more doubts about treatment. My initial feeling was, I don’t want to go through chemo. For one, my body was already so weak. How could I survive it? I knew people who hadn’t survived it. What if I survived it, but I was changed in some irrevocable and unbearable way? What if it gives me a secondary cancer? What if the neuropathy fills every day with annoyance and pain? What if the chemo brain sticks around? What if I lose the ability to do things I love? And then there was the cost. Just…how? What will my quality of life be like after a grueling course of treatment, especially considering the mountain of debt I’ll carry the rest of my days, on top of the other mountains of debt (looking at you in particular, student loans) I already carry? What if I do the treatment, and it doesn’t work, AND I now have all this additional debt that makes it impossible to get palliative care? And how will all this affect those I love? Am I trading one nightmare for an even worse one?
Two of my chemo meds can cause heart damage, even up to a decade after treatment ends. For this reason, I had to get an echo before my first cycle. The echo revealed I have a congenital heart defect that makes me more susceptible to strokes. And of course, it makes the chemo more dangerous. The PA told me that, following treatment, I may need heart surgery. If I’d learned about this before I’d agreed to and set up treatment, it might have swayed me back the other way. Another surgery? Another huge bill I can’t pay? Another serious health issue to contend with? But I did decide to do treatment. Because I would already be gone right now if I hadn’t.
The doubt doesn’t really ever stop. After my first cycle of chemo, I felt much better than I had before treatment started because I could breathe so much better. The glimpse, the reminder, of what healthy used to feel like made me certain I’d made the right choice. Then cycle three hit, and I do mean hit. For two whole days, I felt like I might not make it, like I might just slip away at any moment, so much so that I reminded my sister where the important papers are before I went to bed one night, not expecting to wake up. Every cell was agony, the nausea full-body, and with each pounding of my head and chest, I whimpered inside, how can I possibly do another cycle, let alone five?
The chemo regimen I’m on makes me feel like a toddler caught near shore in a series of waves. Every time I gain my footing and my breath, another one rolls over me, sending me tumbling, until I’m so tired I wonder if it’s easier to just give in to the rhythm. On the worst days, I feel like I’m unraveling on a cellular level, and I am really. I feel like a tub of soup, sloshing inside, held together by a thin membrane of plastic and a precarious lid. I feel like Scully in her little boat, rope stretching. My fingers tingle from neuropathy. My skin blazes. Thoughts of the cancer center, looking at my own face in the mirror, even writing this makes my stomach recoil. The anti-nausea medicine keeps me from vomiting, but it’s no match for the full-body ick that swallows days two through five.
And then joy breaks through again. Just a small ray at first. And I return to myself. I feel life regain its hold. And for the rest of the cycle, I allow myself thoughts of things I might get to do again once this is all over. Some of those days–like when I’m sitting in the shade of the tree out front, listening to the bees move from blossom to blossom–I forget I have cancer for five or ten blissful minutes. And a beloved poem–the one that inspired my Instagram handle–seeps in:
There are days we liveLi-Young Lee, “From Blossoms”
as if death were nowhere
in the background; from joy
to joy to joy, from wing to wing,
from blossom to blossom to
impossible blossom, to sweet impossible blossom.
Everything feels like a negotiation. How can I spare the most hearts the most pain, including my own? Can a little dignity be salvaged along the way? Are any of the things I want even possible? I don’t want to “[r]age, rage against the dying of the light” (Dylan Thomas, “Do not go gentle into that good night”). I want to go peacefully, wrapped in memories of the full and wonderful life I’ve lived so far. I don’t want to torment my family with a long battle that might not be winnable. But I also have so much more I want to do, and on the good days, those things I want to do make me ache. I want to go camping with my sister again. I want to travel outside the US at least once. I want to start an LGBTQIA center in my red hometown. I want to fight to overturn unjust laws so I can change the gender on my license. I want to reach issue 10 of the humble literary magazine I edit.
But there are days where this feels like too much to ask. When I see the death toll of COVID-19, so many dreams snuffed out. Or when I read about someone who committed suicide to spare their family the cost and trouble of treatment. On those days, I feel so much guilt for wanting to survive. I don’t want selfishness to be my legacy.
But each time I’ve gotten lost in the dark, a kind-hearted person has thrown me a tether and pulled me back toward shore. And I know, without any doubt, I wouldn’t be here without them:
My sister: What words are there for her? She’s younger than me, too young to be dealing with any of this, and yet here she is, strong and radiant. I think each time the light breaks through, it’s coming directly from her. When she found me in the bathroom weeping after I realized it was time to let go of my hair, she held me for a while, then quietly took charge, sat me down, and shaved my head. On one of the worst days of the third cycle, when I sloshed, stunned, in a wreckage of cells, she led me down the street to a little wild patch full of purple flowers and a tree with purple blossoms. Her love, the flowers, the sun warming my back, all of them whispered, “Hold on.” In a million small and large ways, her love pulls me through.
My parents: How lucky I am to have them both and near. My dad quietly helping with the yard and projects and dropping off groceries every now and then, casting his warm glow. And my mom, spreading cheer with each text message, making delicious Navajo tacos when the craving hits me in the middle of a hard day.
My primary physician: The doctor who finally listened, who found my cancer, who convinced me to give another oncologist a try when my first one didn’t cut it and found my current oncologist. The doctor who treated me like a human worthy of care.
My surgeon: who convinced me to do the third biopsy, who held my hand as they put me under and said “I’ve got you” when I needed to hear it most, who kept going when the surgery got difficult because he knew how much I needed an answer.
My current oncologists: who showed me that the financial costs of not getting treatment can be just as devastating, so I might as well do it, who truly listen and make me feel heard, who approach me at all times with a kindness that brings tears to my eyes.
My nurse: who said, “I know what you’re going through even though you have a smile on your face.”
My coworkers: who donated money to cover some of my trips to the cancer center and who have showered me with love and support.
My sister’s coworkers: who dropped off an absolutely amazing care package that has been so useful during chemo.
My friends: who have sent me so many beautiful messages of love and support.
Colette: whose life and story are a constant source of strength and who shines as an example of a life fully and beautifully-lived.