You've probably noticed that most of my posts since Wayne died at the end of 2019 have been sharing of technical information from studies. It's very difficult for me to talk publicly about my grief and heartache. But today I'll try, just a little.
Living with melanoma for me has always been about adaptability. What is known today changes tomorrow. This is true for individual response to diagnosis, treatment course, family impact as well as scientific questions, second opinions and political will for social change to address prevention and treatment for all kinds of melanoma.
Information comes at me all the time, just like for you. Learning and absorbing, processing emotions, and translating for family, church and friends, takes energy at a time when there is constant assessment of where to best dedicate energy when if feels like there will never be enough.
And the time. The time with our loved ones living with melanoma.
The time is, and will never be, enough.
I miss everything about the rhythm of our lives together.
Each month brings its own fresh set of loss, of another bottom dropping out. This month is Melanoma Awareness month and Mental Health month. May 18 is Wayne's birthday. Last year he turned 60 and was barely out of an intensive hospital based TIL clinical trial. We missed our daughter's graduation from Virginia Tech. This month would have been our 10 year wedding anniversary. What joy we had that day with our friends and family! How fortunate we felt to have found the love of our life in one another.
We would have a trip planned to celebrate, just us, over Memorial Day weekend like we have every year. Somewhere new. Somewhere to explore with lots of walking, taking our time, eating local foods, cocktails with dinner, and lots of snuggling and hand holding. It's not better for me that no one is getting to plan trips or cookouts or family gatherings this year. I'm sad. I don't like it. I'm lonely and anxious and soul weary from doing the hard things.
Generally speaking, my brain is functioning better. I've been back at work for 3 weeks. I've packed our condo and moved. I put together a training and delivered it for MRF Hill Day. The cat gets fed twice a day. Clothes get washed.
But I can't unpack more than a box a day. I cry at least once a day. The grey, cold, windy weather matches my internal disposition. Thank God for Miss Scarlett's furry companionship. If my sister didn't keep planning "supper club" twice a week I probably wouldn't eat that great. Seeing my mom makes me take a shower, but I haven't mustered the energy to return my hair to its "natural" red color. I feel inbetween my own existence, missing our children, talking to them by phone and in family Zoom meetings, but still feeling apart. I'm irritable without words and don't really want to talk about it anyway.
I miss my husband. I miss my best friend, sounding board, organized, funny, read-aloud to me while I'm cooking, eclectic music loving, tender-hearted, smart, good daddy and brother, thoughtful, partner. I haven't been able to really listen to or sing music without him and can't bear to part with his instruments from our band. There are one dimensional wisps of him everywhere, but not him.
He is gone. He was not in our condo. He will never be here in this new apartment over the salt marsh. He will never get to retire with me, or travel the rest of our list, see the rest of the children marry, hold a grandchild or hear them tease him as El Funkanator Grande. How can I bear to sing again without his harmony beside me?
So I'll try to focus on the other parts of May this year: Mother's Day, Lauren's PT boards, a negative outcome for Haley's corona virus test, fetching the last load to move to Alexandria, writing a journal article for work, getting a delayed crown on a tooth, learning to use an instapot. I'll try to finish the condolence acknowledgement cards and thank folks who donated to MRF in Wayne's memory enough that we can fund 2 medical student grants this year. I'll watch the ospreys in the salt marsh nest to see when the babies fledge. I'll pray for the health of all of us and the economy to stabilize. Like I hope you will, I'll #GetNaked for a skin check,
I'll keep doing the hard work of grief, finding a new place for Wayne in my life.
Peace,
Missy
Frozen in Fear
New member — husband stage IV melanoma
SO stage 4
