“The analogy I chose to focus on wasn’t a battle or fight with cancer – it was a dance with treatment – and neither of us were always the best dance partner.”
Story has been provided by Melanie Adams
Story has been provided by Melanie Adams
As a blonde haired, blue eyed, fair skinned girl born in the 60’s, and a lifetime lover of the outdoors, my melanoma diagnosis shouldn’t have really been a big surprise, after all, I have had more sunburns in my life than I care to admit. A faithful sunscreen wearer today, I wasn’t always. It is almost with horror that I recall having competitions with my big sister as to which one of us could pull off the larger intact sheet of skin following our sunburns. Today I preach (loudly) about the importance of sunscreen and wear it as part of my routine…. a bit late to the game I would suggest.
For a number of years I had been watching a mole at the side of my torso and even joked it was my hidden ‘beauty mark’. It had been changing but I paid little attention to the ABCDE’s of melanoma. That is until the day this growing ‘beauty mark’ began to itch and bleed. I knew instinctively something was not right and went directly to my GP.
Clinical perspective December 2016: Superficial spreading melanoma of the right flank, post biopsy wide local excision and axilla lymph node T3a, NO, 14 mitosis/mm2, 2.4 mm depth, non-ulcerated, Clark level IV.
Personal Perspective: Phew, dodged that bullet. A couple of scars to remind me of the ordeal and carry on – this time with sunscreen! Back to my family and career I love and just look forward.
Clinical Perspective June 2017: Patient suffered recurrent disease involving right flank. In transit metastasis, BRAF positive. Surgical resection completed and new staging of T3B. “With the recurrent lesions showing up shortly after her initial primary surgery, this certainly indicates the aggressive nature of her disease. Patient was offered systemic adjuvant treatment. Standard treatment is to use Interferon. BMS adjuvant clinical trial is about to open up and I will bring back the patient to discuss once ethics board has approved patient information.”
Personal Perspective: Well this was a bit of a shock and I think this was the first time in my life I ever experienced anxiety. Waves of fear, nightmares, and a crazy imagination took me places I certainly didn’t need or want to go. What I knew intellectually versus what I was feeling were very misaligned. Enter meditation, nutrition counselling, yoga, forest bathing… anything I could muster to feel I had some control of what felt uncontrollable (I am most definitely an A type personality). I was carried by an incredibly strong and loving husband (and dare I mention equally as handsome!), our beautiful positive children and so much love from friends and family.
After taking on exhaustive personal research and speaking with many medical professionals a decision was mad. In September 2017, I began a yearlong clinical trial of biweekly infusions comparing Nivolumab OR Nivolumab plus Ipilumab with the trial objective to conclude which protocol will extend progression free
The trial protocol would last one year with biweekly infusions and would take place in the chemo unit of our cancer centre. It was at this stage I enlisted my mighty network of friends and family for support. When asked “what can I do for you?”, I pulled out my description of the patient sitter – which included the drive to and from the hospital, morning snack, a creative lunch and something entertaining to keep us busy for the day long adventure. Over the 26 infusion dates I had so much fun with this. The role of the patient sitter became a bit of a competition and every visit was different and something to even look forward to. Our biweekly lunches became the talk of the unit and my patient sitters were happy to share their effort with patients and nurses in our pod on each day.
At around week 16 I experienced a setback which took me off treatment for six weeks. Aside from some of the more manageable (albeit uncomfortable side effects like the rash, joint tenderness, vitiligo, fatigue, GI issues) my kidneys and thyroid had become a concerning issue and I was then prescribed prednisone to settle the kidneys down and the hypothyroidism was treated which I understand will be a lifelong managed medicated event. As soon as the blood markers and my physical symptoms were acceptable we began again. That was really the worst of the year and in hindsight quite manageable.
I have always taken the view that in life unfortunate things will just happen. How we weather them, move through them, manage them, and overcome them is the choice we have. I needed to move through this to move past it, and I chose to do it with a sense of humour (often dark) and as much grace as I could muster. Our children would be watching closely as we navigated this, it became a wonderful opportunity to demonstrate our philosophy of life. Biweekly infusions, specialist appointments, scans, blood work all became our new norm and carried a strangely predictive rhythm in what had become our unpredictable reality.
We took turns stepping on toes… the tango is now over and I took a dramatic dip off the dance floor and pray that I will not have to repeat the performance. In fact, I am writing this overlooking an incredible view of the St. Lawrence from the Charlevoix where I am enjoying a week long celebration with my preferred dance partner, my husband. Together we are changing the music and working on our happy dance.
The universe is a mystery and if you watch closely you will see it presents you with many gifts, even when they look like they are wrapped in dark clouds. I am now one week past completing the year long trial. I have remained NED. I take great comfort in knowing that as part of a trial I will continue to be watched closely and I will even look forward to my oncology appointments, my clinical team have become my extended family. I regret I never mastered letting go of the scan anxiety.
I ask the universe to take me in her arms and that I am a miracle of science that will see this recital over for good, but knowing if this music begins again, I am well rehearsed and know the routine. I will embrace my husband, children, family and friends and lead them in the Happy Dance. Cue the music.
Melanie Adams is the CEO and strategic leader of a hospital foundation who has dedicated the past 20 years to working with philanthropists and health care leaders improving capacity, access and raising research funds to improve and save lives – she is incredibly grateful to be on the receiving end of the magic philanthropy delivers!