It’s said that experience makes the best teacher. If that’s true – Support Volunteer Julie is ready to teach a masterclass.
She’d noticed blood in her stool and went to the doctor in 2008. Their “It’s probably nothing, but let’s play it safe. I’d like you to make an appointment for a colonoscopy” discussion soon took a turn. Rather than nothing, she was diagnosed with Stage 4 colon cancer that had metastasized to a large tumor on her liver.
It was a dread-filled moment. “For me, Stage 4 was the same as death. There’s no more stages after that.” She plowed ahead. Thanks to an extraordinary medical team, chemo, surgery, more chemo, more surgery and mop up chemo, she was declared “no evidence of disease” in 2009. Since then, she’s battled through two recurrences, including multiple surgeries and even more rounds of chemo.
Through it all, she’s maintained her upbeat outlook on life, gratitude for her support system and a determination to help others facing the same challenges. As a Support Volunteer, she’s providing hope and support for patients across the nation.
“Not a day goes by that I don’t feel like the luckiest person in the world. Many of my loved ones who were alive and well when I was diagnosed have since passed, yet I’m still here. Survivor’s guilt is real, but I wholeheartedly accept the fact that I have unfinished business here on earth, that not even I know about.”
She offers four tips for dealing with colon – or recurring – cancer.
Be a champion of your own care.
“My surgeons and oncologists worked together as a team – and I was part of that team,” Julie recalls. Her first journey through cancer left her feeling empowered. “I became a lot more assertive and directed how I wanted things to go.” In 2012, she asked them to remove a spot they’d been monitoring on her lungs. “It wasn’t really growing, but it was weighing on me emotionally. When they biopsied, we found out it was related to my colon cancer.”
She is resolute in her belief that patients can benefit from working with a team of professionals, relying on each to bring the experience and expertise of their specialty. “Your oncologist is your expert in your chemo plan. But if it’s in your liver, the liver specialist knows livers and the lung specialist knows lungs. I’d go to Taco Bell for tacos, but not burgers.” (Authors note: Post-pandemic, we promise to introduce Julie to better tacos.)
Her second tip flows naturally from the first. Ask. Ask. Ask. “Never hold back your questions, because getting answers can be therapeutic. Sometimes, if we don’t ask questions, we let our minds run away from us.” The simple act of gathering more information can help relieve some of the upset and anxiety. “Fighting cancer is such a scary time. It’s easy to fall into bad assumptions. Questions help manage those assumptions.”
A self-described “eternal optimist” who is “large and in charge” and a natural caregiver, cancer taught Julie an important, if difficult lesson. Let people help. “I wasn’t very good at accepting help. I take care of everyone else. If I were to go through a hard time again, I’d be vulnerable enough to let others take the lead. I was such an actress, and it was exhausting. No one expected that of me except myself.”
Her first instinct as a mother was to tell her children that everything would be ok and that they just needed to focus on their school work. “In hindsight, I could have said ‘this is not normal, so let’s not pretend it is.’ My efforts to ease other people’s burdens – in ways they weren’t asking me to – was exhausting. I should have validated and acknowledged that what we were going through wasn’t normal.”
When she did let people help, the comfort was palpable. Diagnosed at the height of the financial crisis, she was blown away by the generosity of friends and strangers who stepped up to donate vacation time and contribute to fundraisers. “I continued to work, but I missed eleven weeks for surgery, three days every other week for chemo. That generosity meant I kept my house. It was such a huge peace. With the fight I was already focused on, I didn’t have to worry about where we would live.”
Keep perspective. Look for possibilities.
As someone who would “do a million surgeries to avoid chemo,” the prospect of 12 rounds of chemotherapy was especially daunting. Julie’s surgeon helped her find much-needed perspective. “Don’t view it as 12 chemos. View it as one chemo at a time. Break it up into little tasks. If you look at 12, it’s too much” That worked, and after each chemo, she’d head back to the office where a big red marker was waiting to scratch off her latest small victory. “One at a time made it manageable. It was a mental game, but it worked.”
Today, she sees her role as a volunteer in a similar way, helping patients find their own victories, finding hope in possibility. “I want to be that beacon of hope for others with a stage 4 diagnosis. I venture to guess that there are many people like me who think stage 4 is synonymous with death. And here I am 12 years later.”
“The statistics are not high. But the problem with statistics is that they focus on probabilities. But I don’t want to focus on probabilities. I want to focus on possibilities. My doctors were real, they didn’t sugar coat, but it was combined with such confidence. I asked the tough questions. Anything is possible, so you might as well be focused on possibilities.”