When We Were Legendary

I’m coming upon the five year anniversary of writing this blog. I’ve been revisiting posts from the past. When I wrote this one, I hadn’t been able to tell parts of my story with Michael. Since then, I did wind up writing the entire story of Michael’s cancer experience on this site. They are under the headings – “Be 278,” the book title I’d intended from the beginning. I don’t know how many letters I’ve written Michael since I published this in January, 2019, slightly less than a year and a half after his death. Probably about 500. I don’t write him as often as I once did, but when things feel too big or important, I still feel best after sending a missive his way. In my head I talk to him all the time. A lifetime habit.

2c7b4cf8-a778-45e7-aff4-d5953e90fe35Dear Michael,

The polar vortex is upon us now, howling outside our bedroom window, wind chill -30 degrees. I’ve left the thermostat at daytime level and water is dribbling from the faucets. My brain is whirling right along with the vortex. Today I spent some time looking at physics videos which explained wavelengths. I still feel your wavelength, right next to mine. I’m trying to figure out where your energy went, or rather where it is now. Is this the stuff of future science which will finally be able to measure all the sensations people have that fall into the category of inexplicable?a2328b1a-d619-4f53-87ba-699c054f27b3

Sometimes I feel like you’re Princess Leia popping out of R2D2, when her hologram said,  “help me Obi Wan Kenobi, you’re my only hope.” I think you’re out there like that, sometimes closer than others, making your presence known. Our kids feel you too. And  you’re in our house always, palpable although invisible, at least to the naked eye. Who’d have thought that a sensible person like me would think these thoughts?09c8a632-12bd-48fe-86b1-42035ba70f1c

Last night I read my journal from hideous 2015 when our world was crashing in on us. I have no idea how I survived that year, the relentless fear, the awful events piling on, one after the other. You were rejected from the major clinical trial for Merkel cell carcinoma in January. In February you had an enormous tumor sliced off your head, almost to your skull. Each day you got so much more ill and you were in dreadful pain. The doctors were wrong about too much and I knew it. They had such narrow views which they clung to because they didn’t know how to manage your orphan cancer. You were the first patient to ever be treated for it locally and all the far away doctors thought you should be in the clinical trial. You were terrorized, difficult to deal with and our differences were so magnified, I thought I would go mad. You, quiet and withdrawn and me, talking relentlessly and aggressive, trying to peel you out and away from death.f37354c0-0d5c-4030-802a-a17aad9081f6

And then my brother died in April. My mother’s dementia worsened. She was asking me where my father was, and her siblings, and when I told her they were gone, she cried and said she’d missed everything. a5c43574-bcf5-49c3-928a-322dfcc68e39 My relationship with my older sister ended back then, as did my friendship with our dear friends and neighbors. The cancers of you two husbands took us wives into opposite ends of the universe and we broke apart. You declined day by day until our local oncologist pulled a desperation move and acquired one of the immunological drugs off-trial as a last-ditch effort to save you. That was mid-June. The treatment was miraculous but exhausting as we crawled and clawed our way through each treatment.f5ebd063-0f2d-4b1b-b4fb-bb1749ea58e9

In July, my mother fell, broke her hip and was hospitalized for eight days. I flew up and back from you to her, from her to you, until she died on the 25th of that month.ab3d71bb-605b-410b-8a86-e07282007555

Then our beautiful Flash, the dog of my life died, only five days later. Three deaths between April and July. I was sure you were next. Rapid funerals and then back to trying to help you survive. Our kids were struggling, we were all struggling. I was exhausted after reading through the events again. And I thought last night, can I ever really write the book about your cancer? I’ve been trying for over a year. Maybe it’s not the right time.336cb7fc-9a8c-40a2-bdda-4616e7dee1e5 Maybe all these letters I’ve written to you since you died are really that book. I can’t say right now. When I write to you, I feel just like I did when I talked with you, often multiple times a day during our forty-six years of friendship, and certainly every night before we slept. Writing you feels easy and natural while writing the other book makes my words freeze in my head. When the second anniversary of your death comes at the end of May, my letter total to you will be about three hundred. I’ve laughingly titled this book P.S. I Forgot to Tell You Something. Maybe it’s really the cancer book, the one I titled : Be 278. That title came right after we got your diagnosis and saw on the Merkel Cell Cancer website that only 277 people were alive five years after detection if their disease was metastatic. That was you, my boy. You made it. We got our five years.133eb2a6-bc8c-4b12-a663-ebf2c6d4cd20

My head spins, trying to decide what I should be writing about. All your treatments? The moments where, had things gone another way, you might still be alive? The truth about clinical trials? All of those things feel too big.8a8a662d-bb8f-46a3-b97a-edeb5939e421

Instead, let me tell you about my day. I went to Lifelong Learners school for people over fifty – I’m taking one class about molecular biology, one about honey bees and alcohol, and the last about women and jazz in movies, later this month. The first two were both enjoyable. But I was thinking of how little diversity exists among the students and I feel like an imposter sitting with such a homogeneous group. I saw many retired doctors and professors. Do I belong among them? Seemingly. But the societal reflection of cultural stratification drives me mad. I know it’s complicated. I want it to be different. Nothing is ever simple for me. Not even taking a class for my own personal edification.

I long for simplicity but I guess it’s not how I roll. And I’m still thinking about reading that dreadful journal. Mostly, though, right now I want to sit back and stop remembering what it was like to feel and see your tumors in 2015. I remember everything, the growths on your head and the back of your neck and your clavicle. The one I felt in your left groin.

Watching the disease run through you was so terrifying. Why did your cancer have to be so visible? I haven’t looked at the photographs of its seemingly inexorable march for awhile. Back then, I know I felt my intellect was transcending my emotions because things would have been unmanageable for me if I didn’t do that. But right now, the emotional side is driving my bus. I want to be back in the before. When we were legendary.2e3bbe47-8736-4afc-8e07-5bd7a1b81bf8

When we took the 1970’s motorcycle trip to Ralph’s farm with our friends and we got the room with the single bed. And we didn’t come out for days except to use the bathroom and to get an occasional bit of sustenance because we were discovering ourselves as lovers after our months of friendship. We wound up being perfect for each other and we burned with passion and couldn’t get enough of us. Everyone else on the trip, including our hosts, made our hedonistic behavior part of the lore of that farm. The couple who were like ghosts, covered in sweat, physically entwined and so zoned into each other that we never experienced anything but ourselves for those days. Yes, when we were legendary.

That’s where I’d like to stay in my mind. Boomerang your wavelengths back into that space and be with me. I don’t need much more than that to fuel me and send me forward. I still feel us, glued together in that incredible time of discovery and unity. The mental, emotional and intellectual cataclysm that powered our friendship, the one that I still can’t figure out, was already in place. Then we made the icing on our cake. Endless cake. I still taste it and marvel. What happened? Now I am all about the absurd romance and “you’re the one for me” notions that I’ve always dismissed intellectually when I’m especially sage and thoughtful. I’ve never really believed that stuff. But evidently it really happens, because here I am in love with my dead guy, still wearing my wedding rings, talking to you every day in the ether.When we were legendary. We are still legendary.

I am crawling under the covers, listening to the wind trashing things around me, metal hitting wood, not knowing what morning light will bring. Frost covers the bedroom windows. But I am hunkering down in our place, warmed by the heat we generated for decades, still burning inside me. Legendary.ab40a756-a4bf-40e0-8ca2-27bd1bb30a2b


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