Johnny Blue Skies (aka Sturgill Simpson) is set to release a new album in a few weeks. I’d like to imagine he’s doing it just for me. After the last few months I’ve had, I need new music. I need a concert tour. I need that high that is found in the front row.
I’ve lived some lows of late. The lows of lows started last October when some shadows were first seen on my lungs during my cancer surveillance. One scan was followed by another was followed by another was followed by another. The new year even started with a surgery which left me with 2% less of a left lung and a confirmation that my ocular melanoma had indeed moved beyond that flat tumor in my eye. More scans. More tests. More lesions outside my lungs.
I knew from the beginning of this ocular melanoma journey that the chance of it spreading one day were the same odds as a coin toss, but I was intentional about influencing the odds. I changed my diet. I started running. I made good sleep a priority. Yet this rare cancer can lay dormant until – it doesn’t.
The fear, the anxiety, and the fatigue have been hard. What’s even harder is fighting back tears when you see your 11-year-old son’s face in the rearview mirror or hear your daughter’s voice quiver over the phone when she tells you she loves you. There are no needles that hurt my heart more.
Yet I have always said that I was going to love this cancer away, and I’m not stopping now. I’m starting over with the best doctors and tumor boards in the nation, spanning 400 miles across five states. They all keep telling me that I am a challenge, but I prefer to be called “extra special”. I’m ineligible for the only FDA-approved treatment for ocular melanoma metastasis, and unfortunately, Duke also turned me down for a promising clinical trial because, well, I’m extra special. But what they all did agree upon was a plan for a specific immunotherapy that I am beginning tomorrow at Duke.
My Dream Team doesn’t end with my medical team. When my husband promised in sickness and in health, he meant every word. My saddest days have been those where I have wiped his tears, not mine. Like I have always said, he is my best yes.
We’ve also been open with the kids about my cancer. Some ask a lot of questions. Some don’t – and both are okay. They have helped around the house, shuttled kids, ran errands, and filled my kitchen table with the faces I love most in this world. I hope they will one day know what each of them are teaching me about courage, determination, and willpower.
I’ve learned a lot from both my mothers as well – the one who gave birth to me and the one who called me daughter when I married her son. Both have loved me as the best of mothers know how. My mother made sure I needed for nothing after my recent surgery, and my mother-in-law delivered several of her homemade soups which have been known to cure many an ailment miles around.
My sister and sister-in laws have also shown up for us when we needed them most. They have shipped snacks for the kids’ lunchboxes, spent hours on the phone with their brother, and even stepped in to go prom dress shopping. I am sure that my sister now considers me her new full-time job. She and my brother-in-law accompanied me to Duke whereupon she brought seven (yes, seven!) pages of questions for my care team. She went full FBI researching my doctor, but I stopped listening when she said he was a fellow Tarheel. That was all I needed to hear.
They both also traveled with me to Philadelphia last week where I think my sister may have earned a PhD in genetics. She has researched, made calls, and memorized every scan result – one time even accurately pointing out that a doctor was mistaken about lesion measurements before he called me to correct his assessment the next day. As much as I have berated her over the years for being so uptight, she has been nothing but a source of positive energy for me in recent months and has really shown me the real power of a sister’s love. She is married to a saint of a man who has always felt more like a brother.
My friends, my church, and my work family have visited, texted, and called. They have sent cards, packages, food, and flowers. They, and their mamas, have prayed over and all around me. There were some voices that my heart just needed to hear again, especially the ones that are good at bridging time and space. Healing works from all directions.
My girlfriends even surprised me with special group t-shirts at our annual post-holiday party, each blinged out with a sparkly disco ball. Most people don’t know that we all own the large disco ball that once glitzed up the Rollerdome, our favorite local weekend hangout growing up. When it came up for auction a couple of years ago, not a one of us blinked an eye when my husband jokingly asked if we were all going in to bid on it like a beach timeshare. Ummm, yes! We were all in. That disco ball came home with us and now goes where we all go. I can’t wait to play foosball under those spinning mirrors once again.
And I have to say that my fellow “omies” have been a tremendous source of information, support, and encouragement. After some not-so-great scan results, I messaged one of them who had been exactly where I found myself years earlier. I have read her text reply every single day since – “You are in good hands. Trust the process. It is going to be ok.”
What’s next? Tomorrow I get a first dose of my superpowers. They may come with some not-so-good side effects, but maybe I will be among those who can say it wasn’t that bad. I am going to rest. I am going to finish a big grad school assignment, and I plan to be at work Monday morning because it is the happiest place in town. I am going to pray and continue to lay my worries and fear and hope in the hands of the One who first loved me. I will soon be spinning Johnny Blue Skies’ Mutiny After Midnight on vinyl, and with fingers-crossed, grooving to every tune live from a front row somewhere. I am just going to love this cancer away one day at a time – and those days add up.
Fields of Poppy 