My Cancer Story
By week three, I have the chemo thing down. I’ve only thrown up twice. My apartment happens to be across the street from the Roger Maris Cancer Center in downtown Fargo, North Dakota, so I walk to my appointments, which are frequent since I’m getting daily radiation alongside chemotherapy. On chemo day, Thursday, I pop over to the hospital to get zapped, then head to the infusion center. Dr. Failing, my chemo oncologist, is at his outreach clinic today, so my evaluation appointment is with Susan, one of the nurse practitioners.] It goes well until I show her the rash on my arms.
“I’m not sure we should treat you today,” she says.
Susan thinks the rash is an allergic reaction to paclitaxel, one of the chemo drugs I’ve been getting. She takes pictures of my arms for Dr. Failing, then asks me to wait in the lobby until they discuss my symptoms. I’m nervous. The “low-dose” chemo treatments are supposed to help the radiation kill the tumor in my lung.
A nurse comes and says we’re going ahead with treatment, but I’ll be getting extra antihistamine and steroid to allay my skin reaction.
Before anyone guessed I had cancer, I saw a family doctor up in The Forks, where I spent some time writing before settling in Fargo. I went in for a check-up and mentioned that for a few days I’d had a sharp pain in my back. “I think I tore my lat,” I told the doctor. He suggested stretching and physical therapy.
He asked the routine questions: “Any family history of chronic illnesses?”
“I’m adopted. My biological mother had glaucoma.”
“My mom had breast cancer,” I added.
“That doesn’t count.”
I was small the first time I saw my mother’s mastectomy scars. The surgery was done right as World War II was ending, when she was in her mid-twenties. (I’m in my late fifties.) It looked like someone hacked off her breast with a machete. No reconstructive surgery. She didn’t talk about it much, other than to say it had been painful to tell my dad about it when he proposed to her six weeks after they met. I didn’t need to be related to her by blood to understand that such devastation might find me someday.
I left the doctor’s office intending not to return, though I ended up doing just that, because a few days later I coughed up some blood. The pain in my back wasn’t a pulled muscle; one lobe in my right lung had collapsed around my tumor. Because I’ve never smoked or otherwise used tobacco, no one was ready to use the cancer word just yet. To definitively diagnose the mass, they would stick a camera into my lung and also take a tissue sample to test for malignancy.
They tested for everything from live parasites to legionnaires’ disease. The next day I sat at home oddly fascinated as each negative test result popped up on the hospital’s app. Moments before the surgeon called to deliver the news, I read the final test result on my phone: adenocarcinoma present.
In between additional tests to see if the cancer had spread to my brain or my bones, I hauled my belongings to Fargo and kept working at my freelance gigs. For several weeks I didn’t tell anyone I had cancer. My doctors eventually gave it a lengthy medical name. Simply translated: stage-4 lung cancer.
The infusion wing at Roger Maris Cancer Center has dozens of semi-private cubicles. You get your own TV, you can order a sack lunch, and they bring you treats. This will be my first chemo round without a friend along to hold my hand, and I’m slightly proud to be flying solo. I click on the sports channel to see how the U.S. gymnastics team is faring in the summer 2021 Olympics. I used to be a gymnast.
A nurse comes in to check my monitor.
“This says your blood pressure is sixty! I don’t think that’s right,” she tells me.
She checks it herself, and it actually is that low.
“I feel OK,” I say.
My blood pressure recovers quickly, and the nurse decides it’s all right to start administering the chemo. She gets the chemo IV going, but by the time she turns to leave, I can tell something is wrong.
“That’s really hot,” I say, “in my stomach.”
The nurse stops the chemo and summons another nurse. Then my main nurse runs in. The heat in my abdomen morphs into awful pain. I whimper that I have to use the bathroom.
The nurses send for the NP, Susan, and someone gets a wheelchair to take me to the lavatory. After helping me pull down my shorts and sit on the toilet, they offer me privacy, but I don’t want them to leave. I sit there with the nurses clustered around me, positioned to keep me from falling forward or sideways. Finally I pee.
When we get back to my cubicle, they give me oxygen and more steroid and antihistamine. It doesn’t help. Susan tells my nurse to give me morphine.
“I don’t want morphine,” I say.
“It’s just two milligrams,” she says.
Two of my sisters have been addicted to narcotics. One is still alive; one isn’t.
Susan says they can’t resume the chemo if my pain isn’t managed soon. She offers me Toradol, a heavy-duty, non-narcotic NSAID. I agree, and the dose is sent through my IV. After about fifteen minutes, I can sit up and speak normally. No more paclitaxel for me though. I get only my secondary chemo drug today, along with a prescription for steroid pills to treat the rash.
“Will this goof things up?” I ask my nurse.
“Don’t worry. Your doctor will figure it all out,” she says kindly.
I want to hug her, but we’re still in the middle of a pandemic, so I settle for smiling at her from behind my mask.
The morning after chemo, I wake to find the rash has spread across my torso. I’m late to radiation, but the techs are understanding. Back home in the afternoon, I have a bad headache and check my temperature: 100.4 degrees F. I call the cancer center and speak with the nurse on call, who says to go to ER right away.
It’s a busy day at ER, and fever and a rash don’t get me to the head of the line. The triage nurse offers me a blanket and the option to wait outside on the lawn or in my car — protocol during the pandemic, I realize. In the waiting area I see a roped-off section for anyone with COVID-like symptoms. It’s hot outside, and the A/C in the old Jaguar I drive doesn’t always work, so I find a seat as far away from the COVID crowd as possible and settle in to wait.
When my name is called, I’m taken to a small room off the main hallway, where a nurse gives me a gown. I put it on and sit in the bedside chair with my blanket wrapped around my legs. A doctor comes in.
“I’ve been reading about you,” he says.
The gentleness in his voice takes me aback. On my few prior visits to an ER, I encountered harried doctors who delivered a diagnosis and rushed off to the next patient. This doctor doesn’t hurry. He talks to me at length about my symptoms and then helps me onto the bed.
“Let’s have a look at that rash,” he says.
I haven’t showered since yesterday’s chemo, and a vague chemical smell comes off me. The gross red rash now covers most of my body, weaving into the fat rolls on my back, but the doctor’s face registers only compassion when he pulls up my gown to look.
“We’re going to take really good care of you,” he promises.
He orders lab work and a chest x-ray, but ultimately the treatment is simple: Tylenol for my headache and IV fluids to calm my fever. He tells me to keep taking the steroid pills. He has somehow also given me something no one else has since this cancer ordeal started: peace. In the quiet room I relax on the bed, like a bird safe in a nest. The nurses bring me water when I ask, but no one hovers or repeatedly pokes their head in to ask how I’m feeling.
Hours later, when my slow-drip IV bag finishes, the same doctor comes in and asks if I want to go home. I say yes.
“Let’s bust you out of here,” he says.
It’s dark outside when I find my car in the huge parking lot. The silver Jaguar belonged to my youngest sister. She lived in Utah for a while, and she and I would meet up in Idaho to see family. On one of our last trips home together, she brought the Jag. We drove around town all day visiting family, stopped at every other coffee shop we saw, cracked jokes no one else would get. It was one of the last times I saw her happy. Not long after, her addictions got the better of her and she ended her life. I ended up with the Jag. I’ve since paid thousands in repair bills to keep the damn thing running. My sis would have laughed her head off to hear that.
Once a week I see my radiation oncologist, Dr. Sommer. That’s her first name. She has strawberry-blonde hair and wears pretty dresses. She rarely talks to me about my radiation treatments. She wants to know about my writing, how my week went, if I’m getting some exercise.
“Energy begets energy,” she says in her sparkly voice, and I believe her. She tells me to push through the waves of fatigue by moving my body, and not to nap for more than thirty minutes at a time.
She also is a brilliant specialist who can calculate how and where to dose someone with gamma rays to zap malignant tumors. My cancer is inoperable. If I survive, it will be because of Dr. Failing’s chemo cocktails and Dr. Sommer’s zaps.
When I go for radiation, my job is to lie still on a hydraulic bed while Dr. Sommer and her tech squad go Star Wars on my tumor. They’re not actually blasting it away; they’re strategically interrupting the DNA inside the tumor cells, which, if my body cooperates, will encourage the cells to self-destruct. It could take a while for this process to occur. My tumor might shrink but not disappear, and it could resist the radiation assault and continue to grow or spread. After my radiation count is done, I’ll get deep scanned again, and we’ll know if the rebels have destroyed the Death Star.
One of my next radiation appointments is longer because I have to get fitted for a body cradle that will hold me ultra-still while they zap a lymph node near my windpipe that has cancerous cells. When I tell the lead technician I’m sick from chemo, she says to do the best I can. “If you have to sit up and cough, that’s fine, but we’ll need to stop and take another positioning x-ray.”
I lie back on the table and will myself into “the zone,” that state of hyper-focus that sets in when a gymnast performs a routine during competition. You don’t hear anything or see anything except the apparatus you’re interacting with. I didn’t start gymnastics training until I was twelve years old, but once I did, it was all I wanted to do. I was a natural and quickly racked up wins and press clippings. At a state meet held in a college gymnasium, I threw a double back aerial on a wrestling mat. Not many athletes will try that maneuver without the advantage of a spring-loaded floor. One of the local TV stations featured my stunt in their sports montage for months.
My athletic career looked promising until I blew out my knee on a bar dismount. Ligamental repairs are common enough nowadays, but back then the doctors couldn’t do anything for me. I did not cope well. When it was clear gymnastics was over, I drove my mom’s car onto the railroad tracks near where we lived and waited for the train. I hadn’t thought to check the train schedule, and I sat there for a while. When no train appeared to mow me down, my teenage brain eventually decided that killing myself would be like falling off the balance beam and refusing to get back on. I needed to finish the routine even if it meant a lower score.
I now weigh nearly twice what I did as a gymnast, but my body is nonetheless in starvation mode, and Dr. Failing is concerned. My esophagus has started to burn from the radiation. Some days I can barely sip water. I’ve been coughing up more blood.
“If it happens again, you have to come right in or go to ER,” Dr. Failing tells me. He presses his fingers against my neck and then my abdomen. His efficient, clinical touch is comforting; he’s in this with me however things turn out.
We agree that I will ask my friend Jen to come help out for a few days, since my body will reach a temporary low point now that my chemo is done. I’m fortunate to have a cadre of family and friends ready to come and stay with me, though as much as I love them the idea of compromising my self-reliance, even temporarily, is unsettling.
I was forty when my second marriage ended, and I decided to stay single for as long as that marriage had lasted: I called it my Seven Years in Tibet. Doing life solo again was hard at first, but standing on my own healed me in places I didn’t know were broken. I fixed up this old house I’d bought, learned how to cook, went on long hikes with my dog. My freelance career took off. After the seven years, I started dating again but found it no longer suited me. I felt more content and productive on my own. I ended the fling and went back to Tibet.
Jen arrives mid-week and sleeps on an air mattress in my living room. We maneuver around each other in tight quarters; it’s hard for my friend to watch me suffer. I have cabin fever and hope we can drive an hour to Detroit Lakes, Minnesota, over the weekend. Instead, during the night, I cough up more blood.
“Sorry,” I say when I wake her at 3 am on Saturday to drive me to ER.
At the front desk I let my exhaustion show: “I have lung cancer, and I’m coughing up blood.” They don’t bother with triage. A nurse takes me to a room. Jen is allowed to come, too.
It’s a different doctor this time. He orders a scan and blood workup, then returns to say my platelets and white blood cell counts have dropped well below normal ranges. Dr. Failing had warned me this could happen, so I’m not surprised, but I feel a jolt of fear when the ER doctor says I have to be admitted to the hospital.
“That tumor can have blood vessels in it that throw off blood as the chemo does its thing,” he tells me. “We have to get you through it.”
I’m taken to the hospital adjacent to the Maris center, where I stay over the weekend. Jen goes back and forth to my apartment, fetching a change of clothes, my cellphone charger. She and I crack jokes as the various nurses and doctors come to check on me. When it’s time for her to leave, I ride the elevator with her down to the lobby. We walk outside and say goodbye on the front sidewalk. When I get back up to the patient floor, the receptionist looks alarmed.
“You aren’t supposed to leave,” she says.
It’s medically safer for me to remain in the ward.
“Honestly,” my nurse tells me later, “I don’t blame you for wanting a little fresh air.”
I get as comfortable as possible on the inflatable hospital mattress and stare out the seventh-floor window at the night skyline. For the first time in my life, I’m glad my parents are dead. They would be heartbroken to see me like this. My dad especially would blame his smoking for possibly being a cause, though based on the timing and other circumstances I know that wasn’t the case.
Monday morning, when Dr. Failing comes to check on me, I’ve stopped coughing up blood. My counts are still low, but I suddenly have a lot of energy. I ask to walk across the campus to my radiation appointment, but the hospital aide who comes to get me insists I ride in a wheelchair.
“I’ll get fired if I let you walk,” she says.
In the radiation waiting area there’s a strip of carpet, and I dance back and forth across it. I pirouette and add a wrist flick.
Dr. Sommer walks by and says, “That’s lovely. You used to be a ballerina!”
“Gymnast,” I tell her cheerfully. After my knee healed well enough, I was able to dance in theater shows, though never at the level of a prima spinning around on pointe shoes.
Later that week I see Dr. Failing and have labs drawn again. My counts have risen slightly.
“The numbers will continue to rise,” Dr. Failing says with his quiet assurance. In the long white coat he wears over his suits, he is the winter to Dr. Sommer’s summer.
After my radiation concludes, I’ll start getting immunotherapy infusions to help my body keep fighting off the cancer. No guarantees, but Dr. Failing says immunotherapy drugs can help delay or even prevent new tumors from growing. Meanwhile, he says, I should eat and exercise as much as possible.
I go home and do neither. In the five days until my final course of radiation starts, I sleep late, stop showering, watch TV. My esophagus is still burning. Antacid medication helps, but sometimes I throw the pills right back up. I spike a low-grade fever off and on.
The awful smell of my chemo-treated body finally prods me to shower. When I lather on soap, my skin feels like paper. My knee aches, reminding me that I’m no longer the girl who could flip her body through the air. And now cancer has hijacked my brain. Technically there’s nothing wrong with it, but I can’t focus when I try to read or write. I haven’t worked since starting treatment. I can barely follow an email, and it takes an incredible effort to compose a short response. Sometimes I give up and just delete them.
From my living-room chair, I stare out the window at the life going on outside. On the busy street people are coming and going, on their way to and from somewhere, whereas I merely exist. I start to doubt the point of hanging on. This time I won’t need to wait for a train. I could just stop treatment and let nature take its course.
Meanwhile, despite my long silences, the people who love me keep up a long-distance campaign to help me. They launch a fundraiser to help cover my bills. They send gifts and messages: You are not alone. We got your back. They take it on faith that I’ll come back to them. I take it on faith they’ll be there when I do.
After my final radiation treatment in mid-September, I see Dr. Sommer in her office. She gives me a hug.
“You did so well!” she says.
I will get deep scanned again toward the end of the year, but we already know from my radiation imaging that my main tumor has been shrinking. She says the little node is diminished as well.
“I was just mopping up cells,” she tells me.
I embrace the good news and go ring the celebratory big bell in the main lobby. It’s premature since I still have a year of immunotherapy ahead of me, but I like it when everyone claps and cheers.
Six weeks into immunotherapy, I develop a painful infection. A nurse practitioner shows me the images from my original scan five months ago, and the new one, and points out wispy clouds that suggest I have pneumonitis, which can be lethal if unchecked.
I stare at the scans, the blob that is my heart, the black sections in my lungs that show where the air is. On the earlier scan, due to the contrast solution injected into my bloodstream, the cancer in my right lung is lit up like northern lights.
“Where’s my tumor?” I ask.
“There’s no cancer showing reaction to the contrast as of now,” she says casually.
My heart does a little backflip. Is my tumor gone?
“We’ll never know,” Dr. Failing says when I see him. The scar tissue in my lung could be masking residual malignancy. There might be cancer cells lurking elsewhere in my body undetectable even by a detailed PET scan.
I bite back my frustration. I expected at the very least a moment to mark victory or mourn defeat.
“Whether we managed to get it all with chemoradiation or if we can get it with immunotherapy, if we get ten years down the road, it won’t matter,” Dr. Failing says reasonably. I can’t argue with his logic.
I have to take steroid medication for a month to treat the pneumonitis. The high dosage gives me the jitters and makes the left side of my face swell. It also doesn’t work. The pneumonitis leaps into my other lung. The next scan I get reveals a string of twinkly lights on the perimeters of both my lungs and in my left shoulder bone. My tumor had babies.
When I see Dr. Failing, he doesn’t do an exam. This appointment is just to talk. He says it’s evident the immunotherapy treatment isn’t working for me. More chemo can buy me some time, but now that it’s metastasized, my cancer is incurable.
“At some point it will take your life,” he says quietly. “A year, maybe two.” I can tell it hurts him to say this.
I take the Jag to a repair shop to get the tie rods fixed. I want it in tip-top shape for when I can finally get over to Duluth, Minnesota, to take pictures of the aerial lift bridge that spans the ship canal. The hundred-year-old bridge is a key setting for a story I’m writing. While I wait for the repair, I hike over to the Fryn’ Pan for breakfast. The café is filled with white-haired retirees, something I’ll never be. They are fat, skinny, balding, hunched over, absolutely beautiful.
Two guys sitting near me talk animatedly about the strategies used in the attack on Pearl Harbor. Boys and their wars, I think, amused. A man seated in the booth behind me is talking about how his granddaughter declined a shotgun wedding. She had the baby, waited to fit into the dress she wanted, and then got married. He admires the courage of her generation. The retirees’ cheery talk consistently lands in two places: memories they’re busy making and fond memories of the past.
Back when I was dancing with a troupe in Washington State, our director took us to a choreo camp in LA. World trampoline champ George Hery was teaching a tumbling class out on the quad. My dance mates didn’t know who he was, but I couldn’t get out there fast enough. I found George showing a group of dancers how to do dive rolls. When it was my turn, I added an aerial sequence to the end of my flying somersault.
George started laughing. “Let’s jump tramp,” he said. He had a competition-size trampoline set up on the grass. I hopped on, took a single bounce and did a high back flip, tapped the backs of my thighs before kicking out of the tuck well above the jump mat.
“How long has it been since you did a double?” George wanted to know.
I shrugged. “Five years.”
I did more flips, landing easily on the soft trampoline bed.
“Your timers are perfect,” George said.
It was crazy to suggest doing a high-level stunt after being out of the sport for so long. If it had been any other coach, I might have told him no. But I knew George had the eye to gauge my capability, and I could feel it myself.
George got on the trampoline with me. “I’ll be here if you need me,” he said. I didn’t. I knocked out six doubles easy as pie, feeling quiet delight as my body clicked into the acro rhythms that were as natural for me as breathing.
George gave me a coach hug. “Brave girl,” he said, before I skipped back inside to rejoin the dance.
In February I decide to head to Duluth over the long weekend before restarting chemo. It’s hare-brained to drive across Minnesota during winter storm season, but in the now-or-maybe-never scenario that is my life, I load up the Jag and hit the road. Six miles across the Minnesota border, on a county road that promises a shortcut to the eastbound highway, the swirling snow turns to full whiteout. I click on the emergency blinkers and creep forward, following the broken yellow line. I can’t risk pulling off to the side and losing the road entirely; it’s creep forward or stop and wait to get rear-ended. At the highway junction, I think I can turn around without T-boning someone in the whiteout. I misread the terrain; what I think is the road shoulder is actually a ditch full of snow piled higher than the roadway. I drive into the ravine and get stuck at a downward angle. I get out to grab my shovel from the trunk and am instantly wet in the blowing snow. When I make it to the trunk, it’s frozen shut. The butane lighter I keep in my jockey box is out of fluid, so I can’t heat up the trunk lock. I get back in the car to warm up.
Someone pulls open my driver’s-side door. It’s a man. As tall as he is, he’s buried in snow to his mid-calves. I can just make out his pickup truck parked up on the shoulder.
“Keep the wheel straight,” he tells me and leans into the door frame.
The tires chomp snow, but the Jag doesn’t budge.
“I can give you a ride back to town,” he offers, “but I can’t wait around in this.”
I can’t decide: stay with my dead duck car or get in a faded brown pickup truck with a man I don’t know? I thank the stranger and send him on his way, then call 911. The operator puts me on the line with the county sheriff. They already have a hundred vehicles in distress the sheriff tells me, and they’ll have to wait until the weather clears enough for them to visually locate my car down in the ditch. He tells me to keep my exhaust pipes clear of snow to avoid carbon monoxide blowing back into the car while I’m running the heater. I start to cry a little — not because of the long wait ahead, but for my now canceled Duluth trip.
With renewed determination, I break into my trunk and haul all my gear into the back seat. I have some food, water, and extra clothes. I also have tire chains and the shovel. I might be able to dig my way out if the wind dies down. As a backup, I dial my insurance company’s number to get in line for a tow truck, mindful to keep my phone usage to a minimum because I don’t have a charger that will work in the Jag’s cigarette lighter. A dozen more cars stop, all people needing to get home in the blizzard but nonetheless caring enough to make sure I’m uninjured, that I have gas, that someone is coming to get me. I have to keep hanging up on the tow-truck’s call-waiting to talk to the people who are stopping to offer me a ride.
The guy in the brown pickup truck comes back with a tow rope. “I couldn’t bear the thought of you sitting out here,” he tells me.
In a few days I will take the Jag back to the auto shop to get the undercarriage checked out; my sis’s old car will be miraculously undamaged by its trip into the ditch. Maybe I’ll make it to Duluth when the weather breaks, though it seems less important now. Climbing around a bridge isn’t going to delay or undo what lies ahead for me.
The snow is still blowing wildly as the good Samaritan secures his rope to the Jag’s chassis. “Put it in neutral,” he tells me. I barely have the gear shift in place before he’s back in his truck and yanking the Jag back and upward out of the snowy ditch. The wild ride reminds me of when I was a little girl, and my dad used to lift me up by the back of my britches and swing me high over his head. I always howled with laughter.