How Cancer Treatment “Treated” Me: A Graphic Story

March 8, 2021 · by · 1 Comment
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Cancer and fun rarely go together in a sentence but when creativity, curiosity, and a community gather to combine words and images to capture our complicated, cancer-related experiences – it is fun!  And healing – even though the topics being explored – death, diagnosis, brutal treatments, and side effects, and countless losses, are heavy and hard -being invited to explore our emotions and express our experiences is exhilarating. I’m grateful I was able to attend the one workshop led by Ziggy’s Wish held late last year online. Their organization’s mission is “Turning Complex Projects into Accessible Stories,” and they are a great team to work with.

For most of my life, I’ve found respite in writing. But it’s been hard to find words since I was diagnosed with ovarian cancer in the summer of 2019. There were the shock and the fear, of course, but also the intense and consuming medical interventions that changed my life, and schedule enormously and immediately and required me to learn a lot about ovarian cancer, cancer treatment, and the seemingly endless treatment-related side effects. I was knee-deep in survival mode and on information overload and that was just a few months before the COVID pandemic complicated life, work, and healthcare.

It was impossible to slow down and center myself enough to reflect back or gain any perspective. I was spending most of my time fighting for my life.  So when  Ziggy’s Wish invited survivors to create graphic stories, even if we don’t consider ourselves artistic, I signed up for the one-day workshop.  Our only task was to combine words and images to capture a moment, a feeling, or an aha in whatever way we wished. There was so much freedom in this format.

I got to think about how cancer treatment had treated me.  My graphic story/photo essay is the result. It’s vulnerable to share something that is personal, raw, and in a new-to-me format. But it captures parts of my cancer experience in ways nothing else has so I will. And here is a link to the work of the other participants.

Cancer turned me from person to patient, from healthy to pained -from letters and a name to numbers and a treatment plan.
It was thought to be a torsed cyst until 12 hours after surgery when I found out it was stage
3 ovarian cancer. It had been misdiagnosed as a urinary tract infection, a stomach bug, and a cyst. When people say ovarian cancer is “the silent killer” I want to scream. Women aren’t silent. We present to doctors, nurses, techs, and hospitals and we are not heard or seen. I had imaging which showed a canteloupe-sized tumor that was missed (see above). I said, over and over, “It feels like something is right here” pointing to where I felt pressure and was not listened to, heard, or believed.

Served or silenced by medical-model science?
75% of us will be diagnosed at an advanced stage where our chance of being cured is 15 to 30%..
This is the day after surgery where instead of having a cyst removed, I lost my fallopian tubes, ovaries, uterus, omentum, and dozens of lymph nodes. I had “jelly belly,” bruising, pelvic lymphedema, obturator nerve damage, as well as an allergic reaction to the adhesive tape.
The five-year survival stats are grim.
High-grade serous ovarian cancer is the most lethal gynecological cancer and survival stats have remained mostly unchanged in the past 4 to 5 decades.
I tried to smile and act angry and strong but really, what I was thinking is that the past trauma in my childhood is the flame that lit the bomb that went off in my body.
Every time I asked if there were options for myself or family members about prevention, diagnosis, early detection, and treatment, I got bad news.
No early detection.
No screening.
Poor prognosis.
85% of the time, after chemotherapy, #ovariancancer “recurs” and becomes incurable..
I was warned to stay off “Dr. Google” and “Mr. Google” as though facts and stats -rather than cancer itself or the lack of effective treatments – would be more than I could handle.
My loved ones surrounded and supported me.  Cancer has some perks and to know, before your actual death, how loved you are is a gift.
I read everything I could get my hands on. I searched Google scholar every day for treatments, cures, alternative, novel, and aggressive approaches.
I refuse to choose between traditional or alternative treatment options. I combine both to improve my odds because I want to stay alive.
Most of us will end up with recurrent ovarian cancer requiring multiple cycles of chemotherapy.
It’s hard to feel healed by a “medicine” tagged with a hazardous warning sign and requiring nurses to be gowned, gloved, and masked so no drops get on them.
Poked. Prodded. Needled. Tagged. Drawn.
It felt like the cancer was being treated but I wasn’t.
This is my “cancer collection” of hospital bracelets representing the countless days, hours, and procedures done week after week, month after month.
The medical team told me I’d lose my hair 17 days after the first chemo but not that it will come with a rash, pain, and need special shampoo to prevent infection. I will never again take for granted eyebrows, eyelashes, and nose hair.
 “I can do it myself – with help,” is something my daughter used to say. It became my chemo mantra (thanks to my friend, Heidi). II can’t yet talk about my fear of leaving my daughter behind.  I am grateful to my partner, friends, and family for being there for me when I was scared, weak, and absorbing the reality of having metastatic cancer. Those who loved me lifted and carried me and were the tidal wave of support that buoyed me. And knowing they will be there for my daughter if I die too soon, is a comfort. All the people who love me lift and carry me. They are a tidal wave of love that buoy me.
You actually need a prescription for a wig – a hair prosthetic – to get insurance coverage.
It was hard to be bald and without eyebrows and eyelashes because even strangers looked at me like I might be dying. My aunt sent me the best hat hair wigs from Amazon.
There is no scale for the level of exhaustion cancer treatment induces. At times, it was hard to hold my head up.
My blood levels and blood volume went down. Chemo caused “chemo brain,” neuropathy,  and crushing fatigue. I wore good-luck bracelets given by friends to remind me others had lived through what sometimes scares me to death.
Science has failed females. The standard of care fails 85% of us. The standard is a failure. It failed my Nana who had the same disease 31 years ago. Little has changed since her death.
Holding onto humor was hard. Friends and family sent flowers, socks, t-shirts, and masks I wore on infusion days which helped.
I was literally BLANKETED with love from friends, family, and furry companions.
Those who loved me worried and had heavy hearts. Still, they sent flowers, cards, food, and even a weighted heart pillow I’d hold when headaches kept me from sleeping or when I sobbed.
NED means no evidence of disease. It’s the best we get when we can’t be cured. We all chase NED.
Only a small % of us will reach remission. Our lives are a tug-of-war between life and death, gratitude and fear, NED and recurrence/progression.
Cancer is not all bad though my life has completely changed. Cancer takes and takes and takes. But it also gives. I’ve become a joy-stalker who hoards gratitude and constantly mindful that I’m still alive. I love and laugh more deeply. I showed my partner my old hair used in one of the photos and he commented on how graphic it was. I said, “it’s a graphic story so it’s o.k.
Art heals, and as the sweatshirt says, “needs to explanation.” I get to be the author of my story. I don’t “fight” against cancer just to stay alive and grateful. We don’t live forever but love does and those are the things I focus on.

If you are touched by this topic, and the graphic storytelling approach to dealing with cancer, there’s a moving short film about this workshop below.

Tailored Treatments for Cancer: The Graphic Short Story Workshop from Ziggy’s Wish on Vimeo.

To read more about Ziggy’s Wish, go here. And to see the graphic stories produced by the workshop participants, go here.



You Matter Mantras

  • Trauma sucks. You don't.
  • Write to express not to impress.
  • It's not trauma informed if it's not informed by trauma survivors.
  • Breathing isn't optional.

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