Two and half years ago I was a healthy 52 year old Irish lass, happily married with four young adult children ages 20, 22, 24, and 26, teaching nursing at our local community college. I had never been ill, never really been a patient. Cancer was certainly not on my radar…. it does not even run in my family.
This is my story.
In February 2014, after finding a growing bump in my hair/scalp I was diagnosed with Stage 3 melanoma…a weird location for a girl with a full head of hair. The biopsy results were serious. I immediately had aggressive head and neck surgery wherein a 2 inch circle of my scalp and 14 lymph nodes were removed. The scalp part was replaced by a skin graft from my thigh.
At the time of surgery, I received a ton of information which I could hear but not comprehend….and I’m a nurse. I searched the internet and nearly went nuts. Doom and gloom. In a moment of absolute despair I found the Melanoma Network of Canada online. Desperate to talk to someone to, I emailed for peer support. Twenty four hours later Annette Cyr linked me to peer support and Sue Cox called. Sue listened to my entire story and provided an overview of the latest and upcoming research. She gave me information and hope. I had found someone I could relate to. I carried on.
Because 2 nodes were positive, I then received 20 rounds of aggressive radiation to the entire back of my head. Daily I lay face down with my head in this weird Spiderman mask bolted to a table and shoved my head into a radiation machine. I permanently lost all the hair on the back of my head. I was a funny looking site with a long head of hair on the front and nothing on the back. Reverse mullet!
Post radiation, I was started on a drug trial using Ipilimumab. …to “mop up any aberrant cells that got away” said the oncologist. I had some troublesome side effects – red raw eyes, sore joints, sore belly, and lots of rashes. Multi-system inflammation. It also made my skin super itchy… Itchylimumab I called it. Anyway we stopped the drug for a while and I went on steroids. Six months later, melanoma showed up in my thyroid gland and some chest lymph nodes. I had failed the trial. I was shocked to hear the melanoma had returned as I was feeling really good by then. In fact I was skiing the day before I got this bad news….metastatic melanoma.
I was urgently switched to another trial using Nivolumab at Princess Margaret Hospital. After 8 weeks of initial treatment, I had a fantastic response. So I continued to receive Nivolumab every two weeks in Toronto at PMH for the next 6 months. Nivolumab was very easy to tolerate….really no side effects other than thyroid shutdown, a minor issue easily managed by medication, and vitiligo, random loss of melanin throughout my skin. After 16 rounds of Nivolumab, the doctor felt treatment could be discontinued. I was in remission. So I rang the bell at PMH – even had a bell ringer dance party to celebrate my good fortune with my family, Team Graffi, and friends. What a party. Until then my doctor had firmly suggested I not travel outside of Canada. However in spring of 2016 he gave me the green light to go abroad. I grabbed my best hats, sunscreen, and health insurance and headed to Australia with my sister. It was absolutely thrilling to snorkel the Great Barrier.