A little over two years ago, I was watching Michael changing in front of me. I knew he was really sick. But we were befuddled. He’d had a clean PET/CAT scan right before Thanksgiving so we were unaware of a covert, stealthy Merkel cell cancer recurrence that was traveling up his spine and crossing into his brain. Things moved fast. I’d noticed a few odd things in December, 2016. He had a rare episode of terrible vomiting after eating one of his favorite meals of mussels and scallops with linguini. There was a moment when I was making mashed potatoes in the dead of winter and he suggested that I bring in some chives from the garden to flavor them. What could he have been thinking? His behavior was riddled with irritability. He had loss of appetite. His circadian rhythms were off – he started going for walks at night instead of during the day.
He started slipping away. He was angry at my incessant nagging about his eating and drinking. I finally got him in to see our radiation oncologist who diagnosed the wasting condition, cachexia, common in heavily treated cancer patients.
He prescribed medications for symptoms. But Michael wasn’t taking any treatments. By the time we got home that afternoon, I was calling back saying I disagreed with the diagnosis. We were sent on our way to oncology. The oncologist was very thorough, very cautious and very wrong. She ordered scans and blood tests which showed negative for disease. We were told Michael was cancer-free on Friday, January 27th, 2017 and he was given appetite stimulants. We crawled our way through the weekend. Monday was a difficult day. Michael wasn’t hungry and barely ate, consuming about 500 calories. I was following him through the house, trying everything to get him to eat. By evening we were on each other’s last nerve. He went upstairs early, feeling annoyed. I felt terrible. I went up to see him and apologized, explaining that I was just trying to help him maintain himself. I told him I loved him, kissed him goodnight and went back downstairs to watch the news, to distract myself from my growing terror. About half an hour later, Michael appeared and told me he felt confused. When I asked why, he asked me if I’d just left him. When I replied, of course not, he broke down and cried. We huddled together on the couch while I comforted him and got him to drink a bottle of Ensure.
We decided to watch the news together, an activity which was familiar and usual. The focus that night was on the Muslim ban and the screen was full of demonstrators at airports across the country. Michael gazed at the television and asked what was happening. When I replied that what we were watching was a response to the Muslim ban, he asked, what’s a Muslim ban? This question from my current events and history obsessed husband? We went to sleep and when I woke early Tuesday morning, I used all my persuasive powers and leaned on Michael’s trust in me to convince him we had to go to the hospital to search for a real answer to his problems.
On January 31, 2017, we headed to the ER in a desperate attempt to get a proper diagnosis. That day he had his first brain MRI. By late afternoon we were told he had central nervous system lymphoma which had infiltrated his brain meninges and was invisible on PET/CAT scans. This was another error. What was there was recurrence of the Merkel Cell cancer which kept popping up in him after 5 years of treatment. So few patients with metastatic Merkel Cell lived long enough to get that presentation so the radiologist couldn’t identify it. A hearing problem he’d complained about for weeks earlier was caused by tumor tissue. He’d been taking antihistamines for what was purported to be fluid buildup. What a shocking transition from a diagnosis of no cancer to brain cancer in just 4 days. He was immediately admitted to the hospital where we spent the next 32 days. He was given 4 weeks to live, absent treatment. Most people would have gone directly to hospice. Michael lived for 17 weeks. He took hideous whole brain radiation, a barbaric treatment, and eventually, was put back on Keytruda which had been stopped a year before. I’ll never know what would’ve happened if he’d continued that drug which brought him back from the brink of death in 2015. He became more incompetent but still remained himself in deeply essential ways. When I played him music that was special to us, he was responsive and aware. He refused to give up the possibility that he might still survive and showed the stubbornness which was one of his classic characteristics. Still, he mourned his own loss and thought in terms of how much he’d miss his family, his life and all things left undone. We loved him hard and he loved us back. He was a beast. As his brain was overcome by diseased , he lost his ability to utilize technology. When I’d try to stimulate his mind, he kept referring me to the “red notebook” which he said had the answers to all my questions and which I eventually found. It was packed full of thoughts and plans and dreams. He’d written an outline for an autobiography, one he’d never be able to write. I decided to interview him, so he could share his memories and know that his experiences wouldn’t be forgotten. Oh, the stories he told. How he could still access those tales made me marvel at the strands of memory that are deeply tucked into our brains and which, when woven together, make us who we are. Even if that brain is inundated with disease. It’s my labor of love to make sure his stories are codified for the future. Since the beginning of time, human beings have made an effort to be remembered. The following words are for our children and grandchildren. They are my version of Michael’s petroglyphs. They’ll know him forever. And so it begins.
Michael’s Autobiography Outline
1) Early life
2) Da Kids
3) Record Service years
5) High school hijinks
6) The Revolution
9) Diving and Skiing(Water)
10) Life in C-U
11) Grammar school and Junior High
12) Me and Renee on the road
13) Cars and Bikes
15) The Crook
18) The Pretend Hero
19) Boys’ Trips
20) Barnacle – One of Michael’s peculiar nicknames for me. “The partner I never dreamed of, the smartest person I ever met and probably the most loyal.” That’s what he told me while I interviewed him. Sigh. Lucky me.First, I’ll share the stories he was able to tell me. Then I’ll try to fill in his outline from what he told me during our life together. Here I go.
When Michael was about 2 and ½, he had pneumonia. He was living in Shaker Heights, a suburb near Cleveland. He said he lived in Shaker Heights twice as a little kid. They lived on Tamalga Drive. He was sick enough to be hospitalized. His parents left him alone in the hospital. He woke in the night and climbed out of bed and was wandering around. He wound up in the surgery area. The staff put him back in his bed and restrained him by his hands. This was his first real memory and it haunted him. My poor boy.
Michael and his family lived in Fairport, New York for awhile. Since his dad was a salesman, he moved a lot in his early years. He remembered that he had an awful case of mumps there with both his cheeks hugely swollen. His parents bought him a giant box of Nestles’ chocolate bars to make him feel better. Hard to chew and swallow, though. He remembered that the backyard there had a big brick grill that was built into the ground. So the Mr. Grill thing and his barbecue skills were stimulated early.
When Michael was 4 or 5 years old, he lived in St. Paul, Minnesota. He remembered a canal and that his nursery school was located next to it. I suspect the canal was actually the Mississippi River. He thought all the boats floating by were very cool. There was also a freight line near his house. His dad used to take him to the freight yard to look at the trains. Sometimes they walked through the yard to watch the fast freights roll through. Maybe that’s what fostered his lifelong love of trains. Michael also remembered that they lived in a small house – behind it was what he referred to as a “giant wood.” Maybe it just felt that way because he was little. He thought it was very scary, but went exploring there. He called it the two-headed woods. I have no idea why. Maybe the trees made it look that way.Story 4)
Michael loved clouds. One of his favorite pastimes was staring up at them, looking for animal shapes. I don’t think there was ever a time when he didn’t see one. Half the time I had no idea what he was seeing. But that was ok. He believed they were there.
When Michael went to visit his maternal great-grandparents, they took their very expensive Ming vase and hid it in the attic since they were sure he’d destroy it. They were so wealthy that they had upstairs and downstairs maids. There was a button in the dining room under the rug and when someone needed anything from the kitchen, they’d step on the button to summon the staff. Hard to believe. They also had a chauffeur who lived in the basement. Michael used to go down there to talk with him. Fraternizing with the help at an early age. This chauffeur loved to eat Eskimo Pies, chocolate-covered vanilla ice cream squares. He save all the shiny silver and blue wrappers and built a tall pile of them which he held together with a rubber band.
Michael’s maternal grandmother remarried after the death of her first husband. Her second husband owned a farm in upstate New York. Michael remembered being able to sit on a tractor there and going for a ride. That maternal grandmother was born into a family who lived in Erie, Pennsylvania. They owned a clothing business. More on them later.
When Michael was 4 or 5, his family rented a house during the summer in Cape Cod. The house was on a country lane – down the lane there were farms and cows and open fields. One afternoon, the family got on a little boat and went into Boston. What Michael remembered most was stopping for sandwiches. His was butter and jelly and he thought it was delicious and exotic. A little boy memory. In the house on Cape Cod there was a basement. The owners had a rocking horse down there. Michael snuck down there and brought the horse into the yard where he played on it all summer.Ludlow School – Shaker Heights, Ohio
Back to Shaker Heights. When Michael was 5, that’s where he lived, in a small house on Euclid Avenue. Upstairs on the second floor, there was a secret entrance to the attic. Michael could get it open if he climbed on a toy chest near the door. Forbidden fruit. Michael attended kindergarten at Ludlow School, the same one that his mother attended, even being in the same room she was in at his age. The room was shaped like an octagon. He got in trouble in that grade because he couldn’t draw a heart.
On top of that, he had a lisp which required speech therapy. The center of town was called Shaker Square, a transportation hub. His parents pinned an identifying note to his jacket and he caught the bus by himself at Shaker Square to attend his speech lessons. A kindergartner alone. Typing this makes me want to cry, even though I’ve heard the story many times. Being quiet was a lifelong Michael trait that became understandable after learning about this tough challenge for a little kid.
In first grade, Michael was living in Wilmette, Illinois, a northern suburb of Chicago. His family lived on Lake Avenue, which was a very busy throroughfare. He rode his bike to Harper School down a narrow street behind his row townhouse, to be safe from all the traffic. One day when his parents were out of town, he was riding his bike when he crashed into the back of a parked car. He went to school anyway. At naptime, a girl next to him started screaming because apparently he had blood dripping all over the side of his face. His parents were out of town so his babysitter, Mrs. Woodhead, took him to the hospital where he got stitches. When his parents came home they were freaked out because his whole head was bandaged. He also remembered that Mrs. Woodhead kept asking him about whether he’d had a BM. He didn’t know what a BM was-his parents called them uh-oh’s. Figures (editorial comment).
Still at Harper School in first grade-Michael was best friends with three boys, a kid named George, one named Jimmy Bell and another named David Parkhill. Together they formed the ABC’s Woman Hater’s Club. He said the club didn’t last long. Editorial grin.
So there we have it -the first installment of Michael’s memories, written exactly as he spoke them to me, with a few opinions of my own tossed in for perspective. There are more stories to share but I can only do this in small doses. Watching someone so ill dig deep into his confusion was a remarkable experience for me. Unforgettable.