I woke up crying in the gray light of early morning. For the first time in eight weeks, I found myself alone.
My husband and our son were on a camping trip, one that I could no longer join them on because my body had turned on me. Work had kept me busy the previous evening, but now, it was just me and Potter, our aussiedoodle, in a quiet house. Me, the dog and the tumor.
I’m not a crier. I’m an editor and a mom, constantly juggling stories and meetings and car lines. I’d only cried twice up to this point, both times out of shock and over quickly.
This one was different. Ugly, gasping, snotty sobbing. I howled. It lasted at least an hour, all while Potter tried to comfort me by bringing me the farting poop emoji toy a friend sent to make me laugh. My cancer, after all, was of the poop variety. The soundtrack to my tears became the flatulence unleashed every time Potter nudged the toy toward me.
Then, suddenly, it was over. “Enough,” I thought. I threw the poop toy out of bed, blew my nose, made some coffee and headed to the gym to make myself stronger. And I never cried like that again.
Let’s be real
This story cannot be told without frank discussion of bowel movements, poop, No. 2, whatever you want to call the bodily function we do daily yet never want to discuss in polite company. Looking at the contents of the toilet, knowing things were not right, and then talking about it saved me.
While on spring break with friends last March, the kids were running wild with Nerf guns, the parents were drinking and playing board games, and I was spending a lot of time locked in a bathroom with bloody diarrhea.
For a few years, I had noticed a bit of blood when I went to the bathroom, mostly if I’d had sweets. It was enough that I mentioned it to my primary care doctor during a checkup in 2019, but it didn’t seem to worry her.
All of a sudden, I was having more, and it wasn’t just after sweets. March turned to April and things didn’t improve. Then there was throbbing pain and terrible itching. Stool was coming out in ribbons and the blood was bright red.
Now, Dr. Google will tell you that what I was experiencing could be cancer. I dismissed that, convinced it was hemorrhoids. I made an appointment with my doctor in April, then got COVID. When I finally went, she felt a hemorrhoid and said she could give me a suppository, but I should book a colonoscopy. I was 43, two years younger than the suggested minimum age.
It was so hard to reach a gastroenterologist that I almost gave up, having experienced a bit of relief from the prescription. Two of the offices I was referred to didn’t answer their phones. My doctor’s office had to intervene for me to get a call back. After another month, they got me in for a consult to schedule a colonoscopy. By then, I was convinced that I had one of the irritable bowel diseases. Dr. Google said so!
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Let’s get this done and get a plan, I thought. I’m a fan of plans, of creating order where it doesn’t exist. On July 21, a week before my 44th birthday, I went in for my colonoscopy. I was the youngest person there, the only one who had to take a pregnancy test.
I enjoyed a nap and woke up in recovery. The nurse chatted with me until she was sure I was cognizant. Then she said: “They found something.”
The nurses called my husband to come to the hospital while I was asleep. He rushed into my curtained recovery cubby, where I overheard other patients being put on the 10-year routine colonoscopy plan.
The first thing I remember saying was, “But I have a baby.” My baby is 8, but it was his face flashing in my mind. My brilliant little monster who looks like me and will still snuggle. It was imagining him living without me that rendered me unable to speak, barely able to breathe. I hadn’t felt this untethered since he was delivered via a last-minute C-section and taken away to be cleaned up, leaving me panicking.
My head swam with what this “something” would mean for my life, my demanding career as an assistant managing editor at the Tampa Bay Times. Then my thoughts would boomerang back to my child. Rick, my husband, tried to lighten my stunned silence by making a “Kindergarten Cop” joke: “Ellie, it IS a tuma.”
The doctor came in and said he’d see me next week when the biopsy was back. He reassured me the mass was treatable, that by not ignoring the problem I had caught it in time. They told me not to research it yet. We weren’t out of the parking lot before I turned to Google.
My husband called my mother-in-law with the news and our son overheard him say that I had a tumor. When he got home, he ran to hug me and said he had been so worried. As much as I hated how he found out, being strong for him steadied me. I told him I was OK and asked if he knew what the word “tumor” meant. He said he did. I refused to say the word cancer for another week. I would keep his world as normal as possible — we would still go on vacation with our friends, we would walk the dog, we’d get ready for third grade.
The rest of that first day became about telling people. My dad, my boss, my best friends and my Aunt Jane, who happens to be a retired oncology pharmacist. Aunt Jane had an immediate response: You’re going to Moffitt.
Moffitt Cancer Center is a world-class treatment center and its main campus is 45 minutes from my home in St. Petersburg. People travel from all over Florida to be treated there.
I called their main contact line without a referral and established myself as a patient.
“I just had a colonoscopy, they found a tumor. I’m 43.”
That’s all it took. I was booked.
The diagnosis was official on July 27. I had rectal adenocarcinoma. Cancer.
Tests over the next few weeks would determine that it was Stage 3 because the tumor was present in two lymph nodes. The tumor was big, about 3 inches, and had grown through the rectal wall. It was obstructing my bowels.
The first appointment with Moffitt was in late July, the day after my 44th birthday. I met my radiation oncologist, Jessica Frakes. She walked me through the likely treatment plan: chemoradiation for six weeks, chemotherapy for about four months, then they would determine whether I would need surgery or would qualify for a “watch and wait” approach.
They asked if I needed to freeze eggs, as radiation would end my fertility and send me into early menopause. I laughed.
“Nope,” I said. “We’re done.”
Compared to everything else I was trying to process, early menopause did not even make me blink.
“Am I going to be there for my kid?” I asked Frakes. She is a mom, too.
“Yes,” she said, looking me in the eyes. “We can treat this.”
Surgery, I’d come to learn later, meant a complete rectal resection and living the rest of my life with a colostomy bag. The tumor was too close to the sphincter to remove it and reconnect me.
I handled that super well, if your definition of super well is sobbing in front of the surgeon for a minute before pulling myself together. If you’re keeping track, this is the second of two times I cried.
The chance of a complete cure without surgery? About 18% to 25%.
Meet Regina George
I’m a fixer. I don’t have patience for waiting to see what happens. I dive in and make the necessary corrections and get things on track. I thrive on deadlines, which is probably why I’m a journalist. I am the organizer of our social lives and a walking encyclopedia at work. Need a phone number? I have the Rolodex. Need your password changed? Sigh, come on, I can help you.
It’s hard to be that person when control strolls out the door.
I pored over studies on rectal cancer. I developed strong opinions on the quality of medical writing. I kept going to the gym. I kept working. I took meticulous notes at every doctor visit.
The only thing that threw me? Telling people who didn’t know. Phone calls, texts, Slack messages all made me choke up. I had to tell close friends via Instagram message because they got stuck out of the country on vacation. It felt like I was hurting or disappointing people because something serious was wrong with me. Colleagues found out but didn’t make eye contact at work, friends begged to help. I turned to humor to cope.
I have a tumor. It’s in my butt! I have cancer, shouldn’t have kept that stick up my ass. If there was a butt joke, I told it.
It shocked the world when actor Chadwick Boseman died of colon cancer in 2020. He was the same age as me. Colon and rectal cancer are often grouped together because of the similarities, but there are differences in treatment and outcomes — specifically, the option for the watch and wait approach only applies to rectal cancer. The American Cancer Society says an estimated 53,200 people died from colorectal cancer in 2020, including 3,640 men and women younger than age 50. The numbers are likely skewed as the cause of death is regularly misstated as colon cancer.
Our reluctance to talk about something uncomfortable is literally killing us.
In a 2021 Body Stuff TED Audio Collective, gynecologist Jen Gunter talked to poop experts, asking, why are we so squeamish around the topic of this essential bodily function? One survey said 67% of Americans with irritable bowel syndrome waited more than a year after the start of their symptoms to even talk to a doctor.
Our collective shame, Gunter said, stems back to Victorian times and the proliferation of toilets in the home, sanitary reforms, sewer systems — all of which made pooping an increasingly private act.
“When most people think about poop, they think about shame and embarrassment,” Gunter said. “It’s something they don’t want to talk about, and that prevents us from learning things that can keep us healthy.”
Shaking off the stigma of colorectal cancer, of words like rectum and sphincter that have long been the butt (sorry) of jokes, isn’t easy. Twice in my long career at the Times, editors have gotten in trouble for running stories about poop. I am one of them. The other edited this story.
I decided to embrace radical honesty and use uncomfortable words. But the word I truly hated saying was tumor, so with the help of a friend, I named it Regina George. She’s the intractable bully who gets hit by a bus in the movie “Mean Girls.” And then I told Facebook so I could stop the exhausting chore of telling people face to face. It lifted a weight to not have to say the words anymore. No more awkward pauses, no more “oh, poor Ellen” eyes.
The first step
Five days a week, for six weeks, I’d take oral chemotherapy drugs, drive to Moffitt’s main campus in North Tampa and lay under a machine that rotated around my pelvis. This medical device immediately took away the pain that made simply sitting nearly impossible.
My body being microwaved is going to cause side effects for the rest of my life. My tumor was too advanced for a trial that would have targeted it more directly, so the entire area had to be radiated. This means I have to employ my husband or a device one might find in an adult store to prevent vaginal stenosis as long as I live.
Radiation caused urgency to go to the bathroom, which I was living with before anyway. The oral chemo made me tired, but nothing crazy. My best friend came to visit to help at what was supposed to be the worst time, and I was fine, able to enjoy time together that the pandemic had stolen. At the end, my doctor had me start pelvic floor physical therapy because, again, microwaved pelvis.
Moffitt is big on celebrating the steps, so I rung a waiting room bell to mark the end of chemoradiation in October. It was 7 a.m., and I was alone but for the radiation staff and the other patients. After weeks of jealousy and joy watching other people ringing that bell, I felt relief when it was my turn.
Then came chemo
Just before Thanksgiving, I started the first of eight rounds of intravenous chemotherapy through a port placed in my chest. I would sit through a couple of hours of chemo delivery at Moffitt, editing stories and running remote meetings. And then I would leave the hospital with a pump that continued to deliver a drug for 46 hours.
I hated that pump. It made it so that I couldn’t lay on my side, which made sleep more elusive. It whirred when it was shooting drugs into my system, which made my stomach clench. Its black bag was an albatross, a sign that something was wrong. Also, it scared my dog.
The first round was the worst, marked by fun memories like throwing up on myself going 65 mph on the Howard Frankland Bridge. My oncologist, Iman Imanirad, adjusted my anti-nausea medication, and I didn’t get sick again. One of the drugs causes a horrible neuropathy that makes it feel like you’re swallowing glass if you drink cold liquid. That sensation didn’t go away until treatment was over. I dreamed about ice water for months.
By December, my hair was thinning and my heart rate was spiking during workouts. Imanirad told me I should continue to exercise but to listen to my body. People who knew I had cancer kept complimenting my weight loss, to which I replied that I wouldn’t recommend my method.
When my gym closed its doors for good on New Year’s Eve, I was bereft but was still able to get in a couple of workouts a week in my friend’s garage.
Then the constant nosebleeds started. My heart rate spiked to a running rate when I was doing simple exercise. By February, I was offended by the fact that I looked sick, that I was pale and wan. But that was also the month where I found some hope.
One of the coaches from my old gym opened a small group personal training center, St. Pete Strength Club. I had avoided the exercise bike months before my diagnosis because of the pain it caused, but in the new gym I decided, what the hell, I’ll try it. On Feb. 23, just ahead of my last round of chemo, I sat on the bike as part of a circuit class. I squealed and clapped, turning to two of my regular workout buddies.
“It doesn’t hurt!”
Chemo ended March 1. I rang the bell at Moffitt while my husband documented the moment. The nurse asked if I wanted to keep my pump bag and I politely suggested that they burn it. Our son was peeved that we didn’t let him skip school, but he was in on it later when friends and family surprised me with a gathering over pizza and drinks to celebrate the milestone.
After a month, it was time to find out the answer I’d been waiting for: Was my cancer, for all practical purposes, gone? Or would I be scheduled for a surgery and a colostomy bag?
I told myself and anyone who asked that I was at peace with either outcome as long as I was alive. The CT scan didn’t show anything. My MRI report noted “no tumor seen.” The final step, in which a camera goes directly into the rectum, showed inflammation from radiation and a scar where Regina George had lived.
But Regina was gone, hit by the bus. I was all smiles. My husband was still worried. My son did a little dance.
My surgeon at Moffitt, Seth Felder, is a cautious man. He called it a complete or near complete response. Then he laid out the risks of “watch and wait” versus scheduling surgery.
There’s no way to know if all the cancer cells are gone without removing the entire rectum, but a decent number of cases in small studies have shown that chemo and radiation can kill the disease.
With watch and wait, he would repeat the camera procedure every three months for three years. If I get to a full year and have no regrowth, the chances of it coming back go down and keep dropping. And I get to keep my rectum, my sphincter, my pelvic floor — all of which had been touched by Regina and would otherwise have to go.
I asked Felder what he would do if he was me, and he said he would make the same choice: watch and wait.
Every time I sat to write this story, I stopped because it didn’t have an end. I understand better now that there is no end.
This experience will always be part of me, from the impact of pelvic radiation on the body — the loss of full bladder control and vaginal “homework,” as we jokingly call it in my marriage — to knowing exactly who in my life is going to show up when I’m down.
My hair is growing back, my heart rate is normal. I am lifting increasingly heavier weights and reveling in my strength. The gym is my mental health management of choice. Moffitt staff asked, “How are you feeling emotionally?” at every appointment. I kept waiting to delve into a pit of anxiety that never materialized. It still could, though. Cancer is a trauma and everyone handles it differently.
The thing I won’t know until science figures it out is why this happened to me. My paternal grandfather died of colon cancer, but testing showed that my cancer was not genetic. My son will need to start having colonoscopies in his early 30s. In fact, I discovered that my younger brother has had the procedure since his 20s because of our identical family history. No doctor ever recommended that to me. My tumor was likely growing for eight to 10 years, so earlier testing would have made a difference.
I’m overweight, which could play a role. Could it be forever chemicals? Microplastics? Something we’re eating or breathing?
No one knows, but I say “we” for a reason. The cases of younger people with colorectal cancer are growing without a clear cause. This story will join the ones I found last summer when I was Googling tales of women in their 40s with rectal cancer. An acquaintance in Florida who is my age got an eerily similar diagnosis just weeks before I did, and she is a next-level kind of fit.
I stopped eating meat because it helped to control the inflammation caused by radiation, but vegetarians get rectal cancer, too.
There is no end and no real answer. I’m grateful that the aggressive treatment plan had the best possible outcome. Even if things change and surgery becomes necessary, I can live a long life. This surgery, doctors say, does not shorten life expectancy.
I am lucky to have a supportive workplace and village of family and friends, the people who will pick up our kid at school or drop off dinner. The aunt who will call into nearly every doctor’s appointment to advocate for me.
I think a lot about the people who don’t have access to what I did, to doctors and nurses and technicians who listen, and insurance that wasn’t a nightmare.
To date, I have inspired at least seven colonoscopies. If you’re reading this because you’re trying to figure out what’s going on with you, don’t sleep on it.
Call your doctor. Ask for the referral. Advocate for yourself. Talk about your poop. There may not be an end to my story, but I’m busy living.
My son and I made a pact early on that he could ask me any questions he had at night when we settled down to read, no judgments and no secrets. For a kid prone to worrying, his questions about the cancer have always been technical.
“Are they going to replace some of your butt tubing with a plastic hose or something?”
He has thrived despite the ripples of my disease. I’ve seen his confidence and compassion bloom. He made honor roll.
Before I leave his sight, I always tell him, “You know where I am and how to reach me if you need me.”
He always answers, “I know.”