As told to Erica Rimlinger
As my mind groggily surfaced from anesthesia-induced sleep, my mom sounded far away as she delivered the news.
“The doctor couldn’t do the operation,” she said. “There was too much cancer. »
The next thing I remember was a kind chaplain entering my hospital room. Her presence made me feel at ease as she listened to my fears about the unknown. She said, « I’m not leaving this room until you make an appointment with an oncologist.”
My brain quickly tossed off its blanket of sleep, and I thought, “This can’t be happening.” My next thought was, “I have six children between the ages of three and 18. One of my kids has autism and Down syndrome. I don’t have a choice. I have to fight.”
Before I was diagnosed with stage 4 colon cancer, I’d been neglecting my own health. I spent most of my time in the car, driving my kids to activities and school, delivering groceries to customers via Instacart, and eating fast food on the go. I’d been rushing around, too busy to bump my needs from the bottom of a never-ending to-do list of laundry, housework, meals, homework and always more laundry.
If I could go back and talk to myself six years before then, when I was having unusual GI symptoms that a gallbladder removal didn’t fix, I’d tell my younger self, “Go back to your doctor. Say something. Tell her the gallbladder procedure hadn’t removed the symptoms. Get the colonoscopy she recommended instead of the sigmoidoscopy that wasn’t as comprehensive but cost less. Speak up. Make the time, because you’re worth it and your health is priceless.” But my husband had argued I’d already spent too much time and money on my health problems, so I stayed silent.
Now, lying in the hospital bed, my mind spinning with fresh bad news whirling in a cloud of fading anesthesia, my mission was clear. A week later, I was meeting with my new oncologist and I would learn that I could never have surgery again, not even if I had a ruptured appendix. “It won’t help you live longer,” he told me. “You’ll be on chemotherapy for the rest of your life.”
I started aggressive chemo and got genetic testing and biomarker testing, not just to look for a genetic marker such as Lynch Syndrome, which is associated with an increased risk of colon cancer, but to help my doctor plan treatments with more effective outcomes.
They weren’t going to wait around to get the results, however. The biopsy showed my cancer scored 95/100 on the aggression scale. It had wrapped around my internal organs like a film and had reached both my breasts.
As I endured treatment, I reinvented my life. I started meditation. I practiced yoga. I made time for walks and exercise. I kept a daily gratitude journal. I surrounded myself with positive friends and family. I realized how profoundly I had been neglecting myself. I had so much repressed anger bottled up inside of me.
Julie and her six children, 2024
I started counseling and learned how to better care for my body, mind and spirit. Instead of burying my emotions, I now speak up. I left my unhealthy marriage and am proud of myself for not giving up. Whatever time I have here, I’m going to spend nurturing my authentic self. I have a great support system of church, friends and family, and online support groups like Colon Town.
My chemo side effects are unusual but tolerable: drinking cold water feels like swallowing knives, and touching cold surfaces feels like touching knives. But I honestly have never felt healthier. The neuropathy in my toes, another chemo side effect, doesn’t prevent me from walking 5Ks to raise money and awareness for lifesaving cancer research.
My genetic tests showed my cancer wasn’t because of genetics. I was surprised, since I had a cousin who died of colon cancer at age 41. This alarmed my sister, who went out and got a colonoscopy and had urged me to get one at the time. I was 45 then, and at the time the screening recommendations didn’t start at 45 like they do now, so I thought my sister was overreacting. My cousin was a smoker, I thought. And I’m so young. At the time I didn’t know colon cancer can strike at any age and is in fact increasingly common in younger people.
There was a lot I didn’t know before, but I’ve spent this time educating myself about my disease, my health and my treatment options. I’ve learned there are now surgeons who specialize in removing cancer that’s very advanced.
In fact, I recently saw one at Smilow Cancer Hospital with Yale Medicine who said I’m a candidate for surgery because I’ve been stable on chemo for two years and seven months, and I’ve been walking two miles every day. I still have hurdles to clear before that could happen — six more rounds of chemo, a CT scan, a PET scan and a blood test after the chemo. But if the surgeon is satisfied with those results, I could have exploratory laparoscopic surgery in mid-November. If that goes well, the surgeon would remove my primary tumor, do a colon resection, remove my appendix and remove my lymph nodes in the pelvis and near my aorta. This procedure could help me live longer. That is my top priority: Being here as long as I can for my six children.
My 6-year-old asked me, “Mommy, what am I going to look like when I’m 10?” I realized I might never know. At church, I teared up when I saw a 10-year-old who looked like my daughter. I don’t want to miss my kids’ milestones, and I’m determined to live long enough to see them grow up.
In so many ways, I feel healthier than I’ve ever been. I’m exercising, going to therapy, volunteering at church and living a life in balance now, with my values in alignment. I’ve learned so much about nurturing my mental and physical health after my cancer diagnosis. Most of all, I’ve learned it’s never too late to put your health first.
This educational resource was created with support from Merck.
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