“Well at least you have the good cancer!” someone exclaimed after finding out I’d been diagnosed with breast cancer at 39, less than 2 months shy of my 40th birthday.
“The good cancer? How is any of this good?” I wondered. Sure, I was curious to see what I’d look like bald and was secretly excited to express myself with fun headwear, but I didn’t need cancer for that. I could have done that on my own.
You see, the fall of 2019 was supposed to be the season of new beginnings, at least according to my plans. For years I’d been dealing with debilitating endometriosis pain and the fall out of a desired career in music therapy due to a shoulder injury. However, two things had happened earlier that year:
- I’d finally found an instrument that I could play painful; and,
- A hysterectomy had resulted in a painful abdomen.
Life could now be lived and not just endured. At the top of my list was a music festival in the States and a 40th birthday trip to Iceland with my friends. There was just one little hiccup that I needed to deal with.
While putting on my backpack one day, I felt something poking out near my left armpit.
“A cyst”, I figured. I’d had one before. Besides, my hormones were still out of whack from surgery.
As it turned out, cancer had its own agenda, one that trumped mine. It substituted a birthday of northern lights, snow-capped rocks, and hot springs, with my first day of chemo. I’d hardly call that good.
From the outset of treatment, I was determined to deal with cancer “the right way.” I’d “stay positive” just like the breast cancer mantras instructed. I didn’t want to let it spoil my future dreams, so I looked forward to the day I would return to work cancer-free and celebrate with my coworkers. I was pretty sure they’d throw me a better party than cancer had. Cancer was just a minor detour on my path, a nuisance that I’d be rid of in 9 months.
Indeed, I even started to believe I had the “good cancer” since it has some of the highest survival rates. According to the Canadian Cancer Society, the 5-year net survival rate for breast cancer in women is 89%. Some of the early stages boast of a 5-year relative survival rate of 100%. The stories I was told of this friend or that relative beating breast cancer supported these statistics. Some enough I’d be among those stories my friends assured me.
Because the initial biopsies had indicated spread to the lymph nodes, my treatment plan would start with chemo, followed by surgery, radiation, and finally hormone therapy. I’d be cured and could reinstate my ambitions.
Unfortunately, my story doesn’t end with the cure for which everyone hoped and prayed. Cancer didn’t care whether I did everything “right” or was finally getting to realize my dreams after years of setbacks.
During surgery more lymph nodes tested positive than expected. Restaging scans revealed 3 spots on my bones. While an inconclusive biopsy allowed me to continue with radiation, the medical oncologist spoke the words no one wants to hear: “metastatic cancer – incurable.” Three words that replaced my dreams of travelling and furthering my musical endeavours with dreams of funerals, coffins, and eulogies. My funeral. My coffin. My eulogy. (And a bunch of smelly flowers that I’m allergic too.)
“Nobody better write in my obituary that I ‘lost my battle to cancer,’” I remember saying to my social worker. “Everybody dies at some point. Why do I have to be a loser?”
I wasn’t incompetent. I wasn’t unloved. I wasn’t unsuccessful. Sure, I still had cancer. Will always have cancer. But even if cancer is the cause of death, does that mean I lost my battle?
I need only look at the faces of my Wellspring friends to know that isn’t true. Wellspring has taught me that cancer isn’t what it seems. Sure, it is ugly and painful, but there is also life. Where there is struggle, there is also courage. Where there is heartache, there is also love.
I am thankful that amid COVID, Wellspring pivoted so quickly to online programs. My art therapy group became like family: each week we’d virtually enter each other’s homes, chatting about boating, cats, roosters, gardens, blood counts, and other seemingly mundane topics.
I also met an incredible group of people in a music therapy group. Through music we have established a connection that all the miles between us cannot break—threads of life stories woven by the vibrations of our voices. Sometimes I play my hammered dulcimer for the group, the melodies resonating under the weight of unmet goals.
“But you are fulfilling your dreams of being a music therapist,” said Catherine, the music therapist. “Just not in the way you envisioned.” I smiled. Cancer does have a way of flipping the agenda.
Unbelievably, 4 years have now passed since I first heard those dreaded words “metastatic – incurable.” Thankfully, my new treatment regime has resulted in disease stability. I returned to work in January 2023—with help from various Wellspring programs—and am working full-time hours. I have energy to pursue my hobbies. However, with every three-month scan, the thought arises: “Is this the time that I’ll be told my cancer is no longer stable?”
Originally my story had a beginning-middle-end: diagnosis-treatment-survivor. My friends could comprehend that. However, conversations ceased to be straightforward after the oncologist’s reluctant metastatic declaration.
“When will your treatments end,” someone asked.
“Never,” I replied.
But never wasn’t good enough.
“Never? Don’t say that. You can’t think like that,” came the reply.
But it wasn’t me thinking like that. The oncologist had explained that my cancer had exited the curable realm, at least as far as we understand cancer today. The goal of treatment was no longer eradication but control. I would take my new medication – a targeted therapy – every day for 3 weeks, then take 2 weeks off. Repeat ad infinitum until scans showed progression, at which time we’d pray a new treatment was available. Where my original chemotherapy had an end date – a countdown to 0 from 8 cycles – I would now count up in 5-week cycles. I lost count at 20.
Unfortunately, my friend didn’t, or couldn’t, understand this. A few months later when she asked again for an end date, I’m glad I didn’t say “when I die.” Sometimes the truth hurts. Sometimes God doesn’t grant you the miracle that you’ve prayed for. Sometimes it’s just easier to remain quiet.
What my friend and those “good cancer” promoters don’t realize is that breast cancer survival rates are based primarily on those much older than me, those who have the opportunity to catch their cancers in earlier stages through routine screening. Women diagnosed prior to 40 make up less than 4% of all breast cancers and often have more aggressive cancers and poor outcomes due to later stage diagnoses. While I don’t know the survival rates of this 4%, currently fewer than 1 in 4 women with metastatic breast cancer will live beyond 5 years, a stark contrast to the 9 in 10 women diagnosed with earlier stages. While I pray and the oncologist hopes that I will be one of those coveted “1 in 4”, the statistical odds are stacked against me.
I have much to be grateful for – my disease spread was caught early, and my treatment has resulted in disease stability – but that must co-exist with some hard truths. I will live with cancer and scans and uncertainty for the rest of my life, however long or short. The thought of “losing my battle” with cancer also caused me to question my actions throughout the initial treatments. Did I not fight hard enough? Was I not brave enough? Were my thoughts not positive enough? Was it my fault? Was I not enough?
I have learned that life begets death, but death need not rule my life. As long as I’m breathing, there is music to be played, trails to hike, and people to meet. Yes, cancer might have a say in my future, but it will not get the final word.
One Response
Thanks Tracy …. I appreciate your thoughts. Having received a diagnosis of high-risk multiple myeloma last November, I can relate how one’s life makes an abrupt change of direction; immediate and long-term plans are cancelled or ‘placed on hold’ pending results and stability of treatment. Our children and wonderful friends and neighbours flash into focus with a support system I never fully appreciated.
While you describe your desire to help others through music therapy, know that your keen ability to write is a gift you share with others.