After 2.5 years of living with Stage 3 melanoma my husband asked the melanoma doc to remove a small, itchy B-B size spot on his leg. Pathology returned the surprise bad news that it was cancerous and required a larger excision and a new full body PeT scan. Once again my darling husband had to tell me painful news: now we are living with Stage 4 melanoma.
How do you live with this terrifying news?
Sometimes, sobbing uncontrollably into Wayne’s chest, snotting up his t-shirt, while we just hang onto each other in grief, is the answer.
Sometimes, sleep is the answer. When I can finally fall asleep after fending off images of a future funeral, my mind is quiet. There is no stress. My mind and heart recover just a tiny bit from the concussive blow of a worsening diagnosis.
Sometimes, silence with the cat is the answer.
Sometimes, having my attention fully engaged at work is the answer. There is no cancer, or existential Thanatos worry, when I’m developing a training for psychiatric hospitals or verifying monthly outcomes data for CMS. There is creativity, order, a product to deliver and praise from my boss. I have control at work.
Sometimes, singing to music while driving because you’re avoiding listening to news because it just makes you feel furious and impotent is the answer. Especially if you live in The District where government news is, well, a shitstorm. Even if some songs make you cry.
Sometimes, research is the answer. What guidance exists in determining if we continue on Keytruda beyond 2 years or switch to 4 rounds of Yervoy? If we try Yervoy, can you return to use of Keytruda? What does it mean that there is “no evidence of disease” on the PeT scan but the doc just removed cancer the last three PeT scans couldn’t detect sitting just under the skin, on my hubby’s leg? How big does the cancer cell Donner Party have to be for it to show up on a PeT scan? What percent of the practice has this kind of occurrence 2 years into Keytruda (oh, only 3 other patients)? What does the science tell us about best next steps (oh, there is no current science to inform us- only anecdotal/unpublished/best guess by your provider discussions)? Well this is the good news/bad news about living on the bleeding edge of all the advances in the melanoma treatment community. People are living, a long time, so we’re focused in research on what combinations of immunologics and targeted treatments get us the biggest bang for our bucks. And that’s cool. So there’s no friggin research for where we are living now.
And that means, sometimes the answer to how do you live with melanoma cancer is that you spend time “not knowing”, and then shift to “being”. It’s a weird, lonely bubble, but it’s my bubble. It’s near Wayne’s bubble, but not the same.
Sometimes, talking with our Social Worker Oncology Therapist is the answer. Here, we honor the journey. We have shared dark humor. We talk and listen as infusion nurses come and go for 90 minutes.
Sometimes, singing with the band is the answer. I’m in a little trio with my husband and our best friend Greg. Our current naming iteration is Miss Clairol and the Cocktail Weenies. Playing and singing together, searching for harmonies, stretching musically, laughing at our clumsiness and finding the pocket for a groove are all pure joy. There is also drinking. We’ve progressed enough this month to inflict others with a rooftop 2-set performance where we were paid in grilled brats and beer. We are future oriented and working on a third set while identifying locations to play out next.
Sometimes, sharing our news at church or in our monthly Melanoma Research Foundation peer support group is the answer.
Sometimes, saying “Yes to the Dress” is the answer. Our youngest daughter just got engaged. All those episodes of bridal dress shows is paying off. Playing dress-up for real in my wedding gown makes it clear my arms are gorilla like compared to her petite stature. Helping my girls into my mother’s gown, fluffing an ancient skirt and looping over satin buttons was no longer pretend. My pride in their adultness made my heart swell. Now if we can only find the Dragon Fly Inn in Stars Hollow all will be perfect.
Sometimes, writing is the answer. I’ve been able to tolerate this in bits and pieces over the last month. Early writing was more profane than a call by “The Mooch” to a New Yorker reporter. I can’t bear yet to re-read it; the words are too raw.
How am I living as a care partner with Stage 4 melanoma? Sometimes, I’m not ready to say. But today I have some ways I can identify and share. How about you?