Cancer-Doctors-Grief Brain Salad

7319E8DD-BCA2-45C7-88F4-155DAE3B27FFI’ve been struggling with a dreadful case of writer’s block. I’m in the midst of four different blogposts right now. I write a few lines and hit the wall with all of them. One of them is about what Michael and I learned about doctors while going through his five years of cancer and treatments. I really want to finish it because I think what I have to say would benefit others for whom the future may hold a similar experience. I can’t get there.213CD8D0-312D-406F-82D5-7FB7E1BBDCDE Another focuses on more of the biographical and autobiographical information I hope to share with my family and their families, the lore they might forget, the lore they’ve yet to know. Michael had a full outline for his autobiography which he was never able to start. During the last part of his life, I interviewed him and got him to tell me some of his stories so that they’d never be lost. I was amazed to learn that there were some things I didn’t know, surprising because we’d talked to each other about so much during our life together. I knew that he had a few special words that he kept to himself-he was afraid I’d co-opt them and incorporate them into my daily jargon as I was wont to do. I want to finish that one, too.EF0ABE89-E3D7-4599-8DCD-E8AAC9031A87 Then there’s the one about all the different places we lived, photos included, that’s supposed to provide a(n) (I hate “an” in front of “h” even if it’s correct) historical timeline of the most interesting events that happened while living in each house. For a while when we were young, we moved almost every year. No wonder we stayed put in the house where our adult lives played out, the one where mine is still playing out. I want to finish that one. I really do. And then there’s this latest one, only a skeleton piece which has the miserable title, “Baby, We’re Not Going to Have Our Time.”8FD335D7-833C-44D9-89F3-2EE0F7C14831

On January 31st, 2017, lying in the emergency room, after his brain MRI results were given to us, that’s what Michael said to me. As tears poured out of us, we sat stunned by the diagnosis of carcinomatous meningitis, actually still Merkel cell cancer, but unfamiliar to the radiologist because of its rarity. On Friday, January 28th, 2017, we’d been told that Michael’s scans were negative for disease. I have an angle on that story but the fact is, the combination of all these trains of thoughts, all the required words necessary to write anything cohesive and orderly has just gotten to be too much recently.960FF62E-54CE-46CC-BAD5-A86E37E8C666

I haven’t exactly figured out why, but I have some ideas. Generally, I’d say that for as long as I can remember I’ve believed that no matter how big the obstacle, how daunting the task, how overwhelming the situation, I’d always find a way to bull through, push past, climb over, slide around or, whatever you want to call the method, overcome anything. Maybe the outcome wouldn’t be perfect, but I’d find the way to twist the problem into something I could work with, could live with, could conquer. I think my bar in life may not be as high as that of some people. For me, it’s been about finding value in being who I am, rather than being what I do. I already know I could’ve done more in the measurable, external ways. I never had a vocation – I had a job. I was good at it. But had I solved some of my youthful problems with self-discipline and focus, I could’ve been more. I’m ok with that. Money or the lack thereof, has always been a recurrent issue. I’m ok with that too. I figure, if money had been really important we’d probably have done something more about it than we ever did. There were circumstances in our lives that, had we chosen differently, might have made things easier. But given the choice of alienating the people who might’ve made our lives more comfortable but were dreadful human beings, and keeping quiet about our feelings, we picked the alienating road. I’m alright with that too. No inheritance in this organization, not even from the sale of a house. The choices we make, hopefully with our eyes wide open.63D9D102-5BC7-4F69-9A20-61C55D0F6380

I’m pretty good with the “who I am” bit. I was a good daughter, a good wife, a good mom and a good friend. I still am actively some of those things. I try to be a decent human being, on my terms defined by me. I’m hardly a saint. I’m a grudge holder and an unrelenting enemy, but not without reason. I always have a reason. Aside from that slightly vicious tendency, I think I meet my requirements for being a good person. FA02B15D-92B8-4C9E-A119-E9BF17349F9D

When Michael’s cancer was forced on us, after the initial shock, I gathered myself for finding the pathway against this new obstacle in our life. I focused all my intellectual power on finding a way to stop this disease from taking Michael’s life. I wasn’t delusional and I wasn’t positive there was anything to be done outside what the doctors told us. But I wasn’t constrained by the rules that govern the applications of medical standards of care. Being unencumbered by rules allows for casting a wide net, no matter what the focus. That’s what I did and I was so driven that I felt nothing was too big an obstacle. My task was like all the other other mountains I’d tackled in my life. I learned to read scientific articles and taught myself everything I could about Michael’s cancer. I contacted specialists all over the country and convinced them to treat me as someone with ideas worth trying. While Michael focused on trying to be alive, I reached for every possible treatment that could possibly prolong his life. And all the efforts worked. He lived much longer than the few months he was promised. But in the end, Merkel cell cancer was the obstacle I couldn’t overcome. I’ve come to terms with that, for the most part. In my capacity as an advocate and caregiver there were some walls too high for me to scale. Institutional rules and being powerless to control all the doctors blocked my efforts. I understand what happened but I’m still not at peace with some turns in our road.  I’m still mad. I’m still grieving. I still want Michael to come home.6934E389-DF7A-470D-9BA1-928E70903FB2

I don’t grapple with these feelings with the same intensity every day. I go up and down. I’m living a real life that’s current. I take classes and most recently delved into molecular biology, bees and jazz. I’m teaching myself about art, particularly the history of painting.  I’ve discovered so many new- to-me artists. I do love that. I joined a book club. I swim four to five times a week. I have art projects, knitting projects and seeds ready for this year’s garden.  I’m engaged with my family and friends. I’m concerned about politics and the state of the world. I worry about climate change. I’m sick of winter. The snow still falls.26DF7625-E65B-4F8C-B35E-F5C070D0EC18

At the end of these musings there’s a bottom line. I couldn’t climb the mountain. Michael’s absence has sucked away the quiet joy which was part of every day. His steady presence, love and understanding provided my anchor to this life. I don’t get to know if or when that might change. For now,  that missing piece of my life is frequently disrupting my ability to string a coherent essay together. Thoughts flit through my head that feel random and disconnected. I’m distracted. I also censor myself which is something I promised myself I wouldn’t do. I’m uncomfortable because I feel that people think I should be in a different place than where I am. Not everyone…When that happens, I get stuck and can’t write anything except my letters to Michael in which I still get to be all me all the time. I judge myself, feeling that sharing these seemingly unconnected topics in a disjointed way is not what writers do, not real writers. But who said so? Why am I trying to follow rules? I want to do whatever I please right now. I paid plenty of dues for a long time. I want to be done with rules.13C82A8E-1B78-445E-8063-B185A1798FE5

I don’t pretend to be James Joyce but he had the nerve to write Ulysses, a lengthy stream of consciousness tome because that’s where his mind was at the time. Maybe I can be a version of that for awhile, just letting loose what drifts through my head during those days when words fail, when all I can manage is wishing for something I can never have, when doing laundry and washing the dishes seem like huge victories. I’m on my own unpredictable timetable. I didn’t know what life after Michael would feel like. He used to ask me what I’d do when he was gone. I had no clue then and no clue now. I’m full of surprises, many of which I couldn’t imagine, no matter how many times we talked about what would happen to me. So here’s what I’m going to do now. I’m going to bust through this writer’s block. I’m going to be Leopold Bloom for a few minutes and purge some of the sludge mucking up my head. I’m just going to wander and meander a bit until I get over this big bump. It’s not Dublin. But that’s irrelevant. So here we go.3E79F1CB-A633-4304-86D1-8686FA6F5F2E.jpeg  I want to taste my mother’s specialties. She gave up cooking after my dad died. In a way, it felt like being orphaned. I want her stuffed cabbage and her sweet and sour cabbage soup. I want her fricassee, so spicy and delicious – I want to dip hunks of yellow challah into its thin, tangy juices. I want her impossibly melty chocolate cake with the citrus-y frosting that was a balance for the sweetness. And to devour her sponge cake which had coffee in it and stood six inches tall. I want her lemon meringue pie. I’ll always want that pie.8130176B-7B1E-47D8-A4A9-C6D997B556F2

I see myself at my grandmother’s table eating chunks of rye bread topped with apricot preserves, cantaloupe slices on the side. I hear her asking me to bring her a piece of bread in her thick Polish accent. I remember her calling prescriptions descriptions how she loved to look at pictures of sexy baseball players. I feel pangs of sadness as I can still see the pieces of paper on her dining room table which were covered with her careful renderings of the alphabet. I can’t believe she was illiterate.4EA3E005-9C73-46AD-A14A-FC972528C398

“I’m gonna fix his clock.” That is one of the ridiculous phrases my father said when he put on his menacing act. He was not wholly without courage. But as years went by, I thought he was mostly blowing hot air while internally, he was leading his fearful little boy life. Ironically, my mom, who seemed afraid of so many things, turned out to be the brave one. On our first wedding anniversary I gave Michael a chiming Seth Thomas clock. It stopped working years ago. I just had it repaired after decades of its silence. I fixed his clock. Oh, dad.

Random commercials pop up my mind. I don’t know why. The jingles that are tucked into some memory groove in my brain. Today I heard “there’s something about an Aqua Velva man.” Where did that come from? My dad and Michael  both used Old Spice. Old Spice means quality, said the captain to the bosun. Ask for the package with the ship that sails the ocean. Fresh as the sea, yo-ho, yo-ho. Well, I said I was going to just let it all out.

I think of Albert now and then. My first true love.  Every time I hear Your Song by Elton John I remember how terrible I felt when he told me that song reminded him of me. The trouble was,  I had it confused with Gordon Lightfoot’s If You Could Read My Mind which was about a doomed relationship. I wallowed in despair until I figured out the mistake. I never got a chance to feel happy about it until after we were finished. By the time I’d sorted out the mixup we’d broken up and gotten back together about half a dozen times. My innocence and trust were trashed by that relationship. In the end I think I returned the trashing favor. He came back for me a few years after the last breakup, matured and ready for commitment. I’d burnt my bridges and was already in love with Michael. EC5CFC52-D0CA-4A7B-B0DA-3D0EF159FC16 I remember the last time Albert and I made love in a house remembered locally for its architecture. We were so terribly young. I tried to communicate with him a few times in recent years. Fifty years later, he refuses to speak with me. I’ll never know why. We both went off and lived our lives. He was a success, at least from what I’ve gleaned through the internet. At my 50th high school reunion, most people were just happy to see that many of us were still alive. I thought he might feel that way. He and I shared something real and powerful. At one point we both thought we’d wind up married to each other. Two ships passing and all that other trite stuff, I guess. I have a couple of his highly entertaining pieces of writing about our relationship.

One was a fable about Stormy and Little Chicken. No doubt who was who – I was Stormy, the wild horse with eyes that alternately flashed and then went tender. He was poor Little Chicken. The humor and fear still resonate. Then there’s the one about the phony science experiment which measures the physiological reactions of its male and female subjects, two lovers who drive each other mad. They’re found dead in a lab, electrodes still attached, with cause of death measured in extremes of love and torture. Still priceless. I’d love to share those with him. But he’s closed that door and won’t look back. I can’t understand why but I guess it’s evidence that I was powerfully loved more than once in my life. I know that makes me lucky although sometimes it’s easy to forget.A12AC972-08A5-407A-B450-13A3002236C6 I’m re-reading One Hundred Years of Solitude. I do it every ten years or so. I sink into it, like a comfortable friend. I love it as much today as when I read it the first time back in the ‘70’s when it was published.

I’m watching mostly period pieces on television. Most have historical foundations although there’s no pretense of adhering to truth. They have lush costumes, violence and lots of romantic, passionate sex. They have no relevance to current affairs. I’m amazed by this choice of escapism. I’ve never read a romance novel. Some of the shows are based on books I’ve walked past for my entire adult life. I think of myself as a practical realist. Michael was the romantic in our relationship. I guess I’m filling the void by loving what he’d love. It’s kind of like wearing one of his old t-shirts. 113F3C22-5D8D-43D6-BFFA-244AE73EC6A8Recently I had a photo of us from 1972 screened onto the front of a shirt. Doing it was fast and easy. I’m resisting the urge to put our faces on all my clothes. I never thought I’d do this. I mocked people who did this stuff. I would never have worn an outfit that matched my daughter’s or any of that cutesy stuff. Surprise! Another thing I couldn’t imagine.Tennis Australian Open 2019, Melbourne, Australia - 16 Jan 2019

Roger Federer continues his 2019 schedule this weekend, playing at Indian Wells in the California desert. Just a few days ago he won his second tournament of the year in Dubai. I can’t keep counting on his play to get me through life’s challenging parts. I confess, these past two years have been more tolerable because he’s chosen to continue to play. The sport guy who donates millions to the poor.  Small pleasures.9A6895FF-C334-4BA4-A23C-CD2BB81B8913 I’m lucky to be so close to my kids. They understand how I feel because they lived with their dad and me and they felt the power of our relationship. They had their own intense feelings for him which they’re dealing with right beside me. They think that my “golden years”  pretty much suck. So they try to help. I’m a loyal Beatles fan. I had a pen pal from Liverpool when I was only twelve – I lived and breathed their music. I was lucky enough to see them perform at the Chicago Amphitheater when I was thirteen. In 1989, both my parents got cancer, Michael had a herniated disk and I was managing work, two kids and a lot of stress. My dad died in September of that year. In October, Paul McCartney was on tour and Michael got tickets for us through his record store. For some reason, I felt it would be disrespectful to go a rock concert so soon after my dad’s death. Over the years, it’s been one of the choices I regret and I work hard to keep regret out of my life. Recently, I saw that Paul was touring again. He’s almost 76 and this can’t go on forever. I toyed with the idea of going to the closest venue, but opted out due to the expense and other plans I’ve made for this year.

Today, tickets magically showed up in my email, courtesy of my babies. Of course they’re grownups but I’ll always think they’re my babies unless my cognition vanishes. I hope I’m gone by then. In the jumble of thoughts that are no coherent story, I’ll end with that vignette. One regret will be erased forever. I’ll take it, with gratitude. May my next foray into the writer world be more focused and coherent.0DEE05EB-FE78-4FB6-9204-51034A989098

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