6 Ways to Change Your Mindset About Your Stage IV Diagnosis

May 10, 2021
6 Ways to Change Your Mindset About Your Stage IV Diagnosis

 
      Written by Christy Lorio

      Reviewed for Medical Accuracy by Jake Prigoff

  

I turned the big 4-0 last February. While some people experience anxiety about turning 40, I was too preoccupied for that: I was in the middle of a second chemotherapy round for stage 4 colorectal cancer. The only anxiety I experienced about being a year older was the realization that I was nearing the age my dad was when he died.

My mom surprised my dad with an “Over The Hill” party for his fortieth birthday, but 40 wasn’t middle age for him. At 47, he was diagnosed with stage 4 colorectal cancer and died a year later.

Dealing with cancer is hard no matter what the stage is, but stage 4 presents a particular challenge, especially when you're told treatment will never end. It's jarring to think that I’m potentially at the end of my life when I look and—usually—feel like I’m in my prime.

I was diagnosed at 38 years old with a primary tumor in my rectum and metastasis to my brain. Prior to my diagnosis, I was in the best shape of my life: I worked out three times a week, ran 5k races, and I went back to school to pursue an MFA in creative writing. Two and half years later, I’m on chemotherapy for life. Despite multiple surgeries, chemo, and radiation, the cancer is now in my lungs; every time I get off chemo, my tumors grow or a new one pops up. 

I graduated in May and am now enrolled in a second MFA program, this time for studio art. School is an investment and a promise of a better future; while my cohort dreams of gallery shows and teaching opportunities, I’m crossing my fingers that I live long enough to finish this three-year degree, much less enjoy the fruits of my labor. 

My oncologist thinks I have many years left in me, but no one can pinpoint what my life span will be. Instead of growing despondent over an uncertain future, I’ve figured out some coping mechanisms and strategies to help me with both short and long-term goals in order to have a meaningful, purposeful existence. 

Rethink the way you view treatment.

With no end to treatment in sight (at least not yet), I’ve had to learn how to rethink chemo. Since I can’t look forward to ringing the bell, I try to minimize chemo. I currently get treatment every other week and go home with a chemo pump for 48 hours, which adds up to to six days out of the month. When I look at the big picture, six days a month isn’t bad. And I remind myself that while chemo makes me feel sick, it’s also keeping me alive.

Find distractions.

On chemo days, I find ways to distract myself to make the time go faster. I play music to drown out the whirl of my chemo pump. I cook dinner when I feel good enough to do so. I make long phone calls to friends, FaceTime my niece, and use the time to edit photos and get to writing projects that I’ve been putting off. Documentaries on the couch or mindless video games on my phone work too. As long as you enjoy the distraction, that’s all that matters.

Remember that words matter.

“I hate that chemo pump.”
“My life sucks.”
“My situation is horrible."

Every cancer patient has said something along these lines before, and it’s understandable and only natural. That said, I’ve come to realize that negative banter only exacerbates a bad mindset. It hasn’t been easy, but I’m working on banishing those phrases from my vocabulary in order to maintain a healthier outlook. I allow myself to experience negative emotions, but I closely monitor my vocabulary. After all, our subconscious picks up on negative words; negativity tends to pile up and send us into a downward spiral of despair.

Create (realistic) goals.

Give yourself short- and long-term goals. One of my therapists told me to plan to be healthy, with lots of wiggle room. I try to focus on the immediate, like getting through chemo one day at a time. I’ve found that setting goals during treatment has kept me physically active and engaged. For example, I started roller skating while in treatment two years ago. Since then, I challenge myself to get better and even took some roller skating lessons.

That said, if you’re too goal-oriented, it may be self-defeating. I’ll never be the runner I was before my diagnosis. Now, when I feel good enough to run, I focus on the joy I get from moving instead of how fast (or slow) my pace is.

Manage expectations.

Right before my dad died, his kidneys started to fail. A surgeon told my mom that, after a surgery, dad would be back on the golf course by the weekend. He died that week. I don’t want to blindside myself or my family the way that surgeon did to us.

I was optimistic about my outcome upon my initial diagnosis. Since I am relatively young and otherwise healthy, I was sure that I would finish treatment and cancer would be a thing of the past. Unfortunately, my cancer came back just a few months after NED (no evidence of disease), and I went through cancer treatment a second time. I had a four-month break from treatment just to find out that cancer was still wreaking havoc on my lungs and I would have to enter treatment a third time. I remain hopeful for NED again, or at least a break from chemo, but I don’t torture myself hoping that I will be cancer-free when that possibility grows slimmer over time. It’s important to keep your expectations manageable.
 

Find your way to peace.

I wish I didn’t have cancer. I wish I didn’t have to endure the suffering that comes with side effects. It saddens me that I might not live long enough for my niece to remember me. But it does me no good to live in denial or fight it. I’ve made peace with my diagnosis, and I accept it. That doesn’t mean I like it, but it’s far easier to swim with the current than against it.

Making peace is a work in progress; as soon as my health status levels out, something new crops up, like finding out that I had a brain recurrence and getting an unrelated melanoma diagnosis within days of each other. (Come on universe, just stop.) I’ve learned to be my own best advocate in order to sustain myself through unsettling news. I ask for what I need, both from my medical team and from my loved ones. I know it’s cliché, but learning to appreciate the little joys in life instead of lamenting what I’m missing out on also helps. 

Online support groups have proven to be invaluable resources; I’m active in several, including ones for my specific cancer, for young adults, and for metastatic patients. I attend cancer patient and survivor conventions, and I read books and articles written by survivors. Just a few months ago, I finally admitted to myself that I could benefit from prescriptions for my anxiety and sleepless nights. Self-advocacy also helps me gain some control over my situation and brings me comfort in knowing that while so much is out of my control, it’s still my life.

Finding your way to peace is possible, however you choose to do it. Above all, remember that you’re not alone in this. It’s still your life—not cancer’s.

 

Christy Lorio is a writer and photographer and, since June 2018, has been living with stage IV rectal cancer. Christy currently works as a freelance writer and is a photography teaching assistant while working on an MFA in Studio Art at The University of New Orleans, where she also earned an MFA in Creative Writing. In her free time, she enjoys roller skating, hiking, and FaceTiming with her niece.

Sign-up to personalize your cancer journey – free, always.