COOLIBAR
“There have been times in my life where being a human is hard. But there are also many times when grace, large and small, covers and surrounds me making the unbearable tolerable. That grace comes in the form of family and friends. I’m grateful for everyone who has manifested this grace when I’ve needed it most.” – Missy Rand, wife of Wayne Conners
By: Missy Rand
My name is Missy Rand. I’ve never had skin cancer, but I’ve lived through it. My husband Wayne Conners was diagnosed with Stage 3 Melanoma March 20, 2015. At the time we had been married for five years. We had four children launched into their adult lives and had moved to the DC area for an adventure. We formed a band with Wayne’s best friend and first band-mate from high school, Miss Clairol & The Cocktail Weenies, performing in Virginia/DC/Maryland. Life together was full of music, purposeful, and fun.
When he was diagnosed with melanoma I knew our life was going to change, but our partnership didn’t. We faced each day with a united front and lived with the cancer together. We always said to each other: I am for you. I am for us. When someone you’re living with is diagnosed with melanoma, your behavior has to change. I wasn’t going to make two different meals or schedule two different vacations. We were living our lives together, so we both made adjustments together.
One of the biggest ironies of our situation was that I grew up as a water baby and had much more sun exposure over my lifetime than Wayne did, but he got melanoma. Neither of us had ever worried about the sun or our exposure, but the minute he was diagnosed Wayne began to fear it. For me, if I don’t feel the sand between my toes, I become very crabby. We needed to find ways to get me to the beach and keep him safe. We bought more clothing to try to cover him up on our beach trips, hikes, bike rides, and mountain vacations. We did our research and were able to find the right kind of UV protection to keep us outside. The Melanoma Research Foundation (MRF) even connected us with Coolibar to get hats and clothing to try.
I was there for all the doctor visits, including when he underwent surgery to remove the initial cancerous mole on his scalp, before proceeding to infusions of immunological treatments, further surgery to target a recurrence in his thigh, and a 3-week hospitalization for a clinical trial using TIL (tumor infiltrating lymphocytes). Through all of this Wayne and I became immersed in the melanoma research and treatment fields, navigating insurance forms and expanding our knowledge base for labs and scans, even appreciating when the outcomes were normal, abnormal, and in need of immediate action.
One of the hardest parts was the watching and waiting. Wayne had regular oncology and dermatology appointments which included routine skin checks for any abnormal spots. I even scheduled monthly mutual skin checks into my Outlook calendar to make sure we never missed self-monitoring. As many people can relate, this phase can cause major ‘scan-xiety’. Before each appointment, we’d feel tension build about what we couldn’t see except via high tech scans and bloodwork labs. After some appointments we’d also have to wait for additional biopsy results. It was very stressful. Making music together helped manage the stress.
We needed people around us to help us cope with the constantly changing experience of living with this cancer. Early in our journey we discovered the Melanoma Research Foundation webpage and there we found a good blend of evidence-based information and treatment advocacy, but it was hard to locate a melanoma specific peer support group in Virginia. As Wayne was successfully progressing in treatment, we sought an opportunity to contribute to the melanoma community. MRF opened a training curriculum to help seed new support groups around the US. Following the training we founded a monthly support group for those living with melanoma and their care partners —Living with Melanoma Alexandria. We needed a ‘safe place to land’ and talk about the rollercoaster experience of living with this cancer, good news and bad. The group has continued to meet this need, going virtual since the Covid pandemic.
In 2018, I joined the MRF’s #GetNaked campaign. This was the first year MRF used models with lived melanoma experience. Part of my partnership with Wayne has been to do whatever was in our power to support, advocate, and impact the outcomes for persons diagnosed with melanoma. Others went before him in clinical trials which gave him, and members of our support group, the chance to slow the progress of melanoma in all forms, and a chance to hear our favorite four words: No Evidence of Disease. Because of Wayne’s diagnosis, we know our children and his siblings are at increased risk to develop melanoma in their lifetime. Getting naked so all your skin is visible for self and dermatologist assisted assessments is essential to prevent melanoma and allow early detection for the best outcomes. It was easy for me to be brave and #GetNaked for this MRF campaign. Wayne was in New York City on business the week my photo was larger than life in Times Square.
Hyperlink: youtube.com/watch?v=E7-svhM...
Wayne lived fully with melanoma that metastasized until December 30, 2019. Our family and friends continue to in the celebratory moments and the quiet daily connections where his absence catches our hearts.. He was a cat-loving introvert at heart with an expansive love for all kinds of music, a bridge-builder in his professional life working in mostly non-profit environments, a tender-hearted father, brother and son, with an infectious smile, and the love of my life. Even in difficult situations, he knew how to play to relieve tension. When his mom was in the hospital following a hip fracture, Wayne and his siblings took to dancing on rolling chairs in full surgical gowns, gloves and masks while waiting for surgery to end.
I continue to facilitate an online community for melanoma caregivers at HealthUnlocked and work closely with the MRF and other organizations to keep advocating for prevention and early detection. I value the importance of being a part of a community, whether you’re a patient or a caregiver. We need each other.
There have been times in my life where being a human is hard. But there are also many times when grace, large and small, covers and surrounds me making the unbearable tolerable. That grace comes in the form of family and friends. I’m grateful for everyone who has manifested this grace when I’ve needed it most.
It’s brave to live with melanoma. It’s brave to be a caregiver. It’s brave to love and be loved. It’s brave to be brave together.
