It’s “our” story, because my husband Bob has been with me every step of the way. I could not ask for a better partner in life.
Story has been provided by Michele Christl
Story has been provided by Michele Christl
A fortunate round of golf with my dermatologist, Dr. Marnie Fisher, in the summer of 2014 was followed with the removal of a mole on my shoulder that was diagnosed as melanoma. A further wide local excision by my plastic surgeon resulted in a Stage 0, melanoma in-situ diagnosis. No further treatment required except annual check ups. Whew! Dodged a bullet…or so I thought…
While on holiday in November 2016, I felt two innocent, little bumps under my skin near my old incision. Upon our return, my plastic surgeon removed the bumps and wished me a Merry Christmas. Then came the call to come back in, and on December 12th we learned the diagnosis of metastatic, malignant melanoma. Ugh. My husband Bob and I were in total disbelief and in shock. We immediately asked what the next steps were – CT scans, brain MRI, SLNB, much bigger surgery, skin grafting, pathology and staging. Merry Christmas!
We got home and Skyped our family to share our news and cancel our plans to fly out west for Christmas. We had a new priority. Since it was the holidays, we were getting appointments well into January and February that sounded like an eternity to us. So, we started to work with the office managers, schedulers and nurses to help us move our dates up. It was not time to be shy. We called everyday to get in on cancellations and made ourselves available at the drop of a hat. By the end, we had all our scans, tests and surgeries completed by late January. The SLNB was clear and my surgery was successful in removing the entire tumor with clear margins; however, the tumor was actually located within a lymph node on my shoulder- Stage 3C.
At a time when you are paralyzed with fear, sharing your diagnosis is a difficult and personal choice. We chose to let a few dear friends know and asked them to share the news with others; and especially to anyone who may be able to help. The level of support overwhelmed us. It’s amazing how social media keeps us connected, and it was through one of these connections that a friend thoughtfully introduced me to Annette Cyr, one of the MNC founders.
What a remarkable and generous woman. She called and walked me through my diagnosis, helped me understand my next steps, what resources to use and how to prepare for my first oncology appointment. Annette also suggested that I attend an MNC hosted Patient Information Session in Toronto where I could learn more about the advancements being made in melanoma treatment.
My oncologist, Dr. Butler recommended the clinical trial comparing pembrolizumab vs. Interferon. While qualifying as a candidate, we found a mass on my right breast that would require a partial mastectomy. “You’ve got to be kidding!”. It was a recurrence of a phyllodes tumor removed in 2013. Fortunately, the tumor was benign and I was healing quickly. However, the clock was ticking as you only have 27 weeks from your melanoma surgery to start the trial. Then we find out that my hemoglobin is too low!
I have a blood disorder called thalassemia minor that for me is asymptomatic, but results in low hemoglobin around 93-97. The trial requires 100. Somehow, I have to increase my hemoglobin to 100 within the next 2 weeks! So I ate liver & beets everyday and we power-walked to the hospital for blood work. 97, then 93 and then 99…ugh! On the very last day to qualify, I stopped all fluids for 24 hours, took a 30-minute sauna, power-walked to the hospital and took my final blood test. I still remember when my clinical nurse Ruth called — OMG you got to 100 exactly! We met the qualifications for the trial, but we still had to be randomized. It seemed like this roller coaster would never end! On May 12th – exactly 5 months from the day I was diagnosed, we got pembrolizumab.
A week later, we started the routine that would dictate our time for the next year. Every 3 weeks we have blood work, see the oncologist and have treatment the next day. Throughout our whole experience, we drew strength from the love and support of our family and friends; and doing a lot of head-clearing, soul-searching power-walks.
So when the MNC Strides for Melanoma Awareness hit our email, we knew we had to jump in! Again, we reached out to our network and asked for their support to donate to our walk as team “Bochele” (a combination of our names). We set a team target of $5000; and asked anyone to join us! We were not prepared for the outpouring of generous support, and we hit our targets in the first 3 days! Our numbers kept growing …and we raised over $16,000! It was a very emotional experience.
It is tough dealing with a cancer diagnosis -all the tests, appointments and uncertainty. At times, you can feel like your life is out of your control; but we feel that you always have control of the things you can influence. Early on, we took control by working to move our dates up, we were polite and patient with all our nurses, techs and staff; and punctual for all our appointments. We keep educated about my cancer and developments. We kept up our exercise and paid more attention to our diet and sleep.
We managed to make some family and golf trips in between all the madness. And fundraising for the Melanoma Network through their annual walk, gave us great satisfaction with the hope their awareness programs may save someone else from having my diagnosis in the future.
I only have three treatments left, and there is anxiety that comes with that too. However, we remain hopeful and thankful. Thankful for family and friends; and for the amazing work of PMH, Annette and the hard work and progress of MNC. Lastly, I am most thankful for my Bob.
Team Bochele at Strides for Melanoma Awareness 2017 – Team Photo.