Renee Rocks

Right now, I have a number of friends and family members who are coping with cancer. It’s been 13 years since Michael’s initial diagnosis of Merkel cell carcinoma and 8 years since his death. Those numbers seem so hard to believe as memories of those days are still so vivid. My conversations with those still coping with the morass of cancer led me back to these posts that I was writing to describe our experiences from back then. Maybe a few people will find something that resonates…

After completing a cancer treatment, our local oncology department has a tradition of having the departing patient ring a bell to signify the end of an arduous journey. Michael just wanted to get away and head into his old life. I don’t think he really believed that this radiation had cured him and he was anxious to get to get back to school, feeling like he wanted to attack all the work that he so very much wanted to do. “I’m not done yet, he’d say.” But he rang the bell anyway. He was also given the option of saving the hard facial mask he’d donned thirty times. That went straight into the garbage. He said he never wanted to see it again and would never use another one, ever. I think it may have been the first time he’d admitted how incredibly hard it had been for him to be bolted underneath that thing all those days. I thought it was positively medieval although I understood its real purpose.

We were now in the waiting period between treatment and the next scan. During the fall of 2012, the worst side effects of the radiation diminished and Michael regained weight and strength. Always an avid exerciser, he went back to running and biking.

Those hard, scary months between May and August receded into the past, rapidly replaced by what had been our normal life for so much longer. But there were subtle differences that we were aware of every day. Now cancer was lurking in the corners of our world, shadowing us, no matter what we were doing. I suspect there are some people who would go forward feeling that they’d put the trauma behind them, papering over the bad memories as fast as they could. With a diagnosis like Merkel cell, that was virtually impossible for us to do. We knew there had been metastasis, albeit a small one. But that fact was impossible for us to completely ignore. Michael, always the quieter of the two of us, was better at acting like our world was unchanged. Not me. As long as we’d be living on a three month check-up routine, both with his surgeon and our dermatologist, I was like the dog with the bone, gnawing away at this mysterious invader, trying to get a handle on what might lie ahead for us. I was already undone by the first misstep in our road, the fact that Michael could have swapped his dermatology appointment for mine which had been over a month earlier. I’d made the offer to him to switch his with mine but he didn’t realize that anything scarier than melanoma was out there.

His lesion was small and very different looking than melanoma. When we learned about MCC, one of its benchmarks was the speed with which it grew. I’ll always wonder if that extra month would have made the difference in stopping the cancer from exploiting those 2 little metastatic lymph nodes out of all 66 that he’d had removed. Only two. I have to smack myself in the head and say, spilt milk. Can’t go backwards, only ahead. After that early quick research that I’d done after the initial diagnosis, my studying took on a whole new life. An English major, I hadn’t spent much time immersed in science although I did love biology and the natural world. Because my mom had been sick so often in my life, I’d learned a lot about what can happen in our bodies and had gone through breast, thyroid and bladder cancer, respectively, with both my parents . 

Knowledge was my antidote to fear and anxiety. This MCC beast was no garden variety cancer. So I buckled up and took the plunge into the real science you could dig for on the Internet. I used PubMed a lot to read about studies, experiments and theories. I read about clinical trials and joined groups whose topics were neuroendocrine cancers. I dug through every website that referred to Merkel cell. When I didn’t understand the scientific language, I looked it all up. Surprisingly, I started getting comfortable in what early in my life, had seemed an inaccessible part of the world. I also saw the names and locations of the doctors and research facilities that popped up regularly, the people who were focusing on Michael’s disease. This was a delicate time for us. Michael moved slowly in life while I tended to zip along fast. The amount of information I was accumulating would consume me as I cast about for answers. I needed to be careful not to overwhelm him and his very different approach to this nagging fear we had.

What seemed to work best was when I would come up with some practical things for him to do, like taking immune-boosting supplements and trying to get him to compromise about the crazy long hours he worked. That was a big issue between us. He was so in love with teaching that he worked every night until midnight or one a.m. and then got up at 6, generally arriving at school by 7 and staying until 4 p.m. He’d come home, take a short nap, eat dinner and start all over again. I argued with him about this schedule which I thought would be arduous for someone half his age. But he was stubborn and relentless and I attempted to keep my mouth shut to avoid stress between us. At least when I could. I knew he was mustering his resources internally for whatever lay ahead. He simply had a different style than me, not surprising after all our decades together. I was usually stamping my foot at the finish line while he meandered slowly along the road.

Meanwhile, fall moved along. He had a check-up in September and then the first big deal, a PET/CAT scan scheduled for November 8th. Having had no systemic treatment, this was scary, as any random cells that could have moved through his lymphatic system or bloodstream would have had an opportunity to grow. Such anxiety. We had to wait a few days for the results which was really hard. Life feels so out of control during those waits, which it always actually is, but this extra load felt so heavy. Eventually the surgeon himself called with the results, elated because the scans were clean. We were so relieved and yet, very cautious. MCC tends to return in the same vicinity in which it was first detected. Michael was being examined in his head and neck area. But he had a 6’4″ body with lots of room for nasty cancer cells to hide. I was not content. But for this time he was okay. He and I were learning to live in our moments, rather than planning too far ahead. We had our usual family gathering for Thanksgiving, Michael’s favorite holiday. We’d had to cancel a trip to Sanibel Island that we had planned for June, 2012, right after his diagnosis. We rescheduled it for June, 2013.

In December, 2012, we headed to Starved Rock for what had become an annual holiday trip for us and our kids. I don’t recall who went that year but we did and we savored every moment, from the hiking in the woods, to our favorite room in the lodge, to the big dining room fireplace and the homemade fudge. We swam in the big pool encircled by tall glass windows so you can watch the snow fall while you’re being beachy. We lolled in the hot tub. We came back to share our annual New Year’s Eve dinner with our family and friends at Biaggi’s boisterous restaurant. And then it was 2013.

Michael continued his 3 month checkups. I was still taking care of our grandson, so I didn’t join him for most of those 3-month appointments until a meeting in June, 2013, which included our entire medical team, the surgeon, the oncologist and the radiation oncologist. This meeting was an annual event provided for any patient who was still negative for disease after treatment. Interesting cases like Michael’s were routinely discussed at our clinic’s tumor board so that new perspectives and ideas could be shared. We had a new, younger radiation oncologist at this confab, as our original one required a kidney transplant and was off with his own issues. I’d had a whole year to do research and I walked into that room loaded with ideas and questions. Michael let me run point on this because I do well in confrontations. The conversation kicked off with our surgeon being pleased at Michael’s stability and progress. We even had a letter from our Dr. Chris Bichakjian, an MCC specialist in Michigan, who felt that since Michael was a year out from his initial diagnosis, his odds of surviving MCC were as high as 70%. But then there was me. I couldn’t understand the protocols for treatment. To me, a protocol meant that if you employed a series of measures, you could expect a cure, an absence of disease. But MCC was incurable. To me, that translated into the fact that if you were lucky and fell in the center of a bell curve, you could have certain expectations. But that’s not how cancer works for everyone. I was frustrated that Michael hadn’t been scanned since November of 2012. I asked the team how often melanoma patients were given PET/CT scans. They responded with “every three months.” If Michael’s cancer was so much more lethal, then why wasn’t he being scanned that frequently? Their answer was that only one post-surgical scan was recommended by the protocol. Around and around we went. I noticed that the new young radiation oncologist was sizing me up. His name is Dr. Sinisa Stanic. He finally proposed a compromise, a follow-up scan in November, 2013, a year from Michael’s last one. He said, let’s do this for peace of mind. I wasn’t exactly happy but this was better than nothing. I realized that doctors like staying in their proscribed lines. They need them to keep things stable, to give themselves a structure in which to manage what is basically the wild west, the individuality of a patient’s response. In my regular I was always pushing outside the lines, casting boundaries aside. I think that’s what advocates should be doing anyway. In any case, we scheduled scans for November 8th, 2013, an exact year from the last one.

School ended for Michael and we took off for Sanibel, at long last. I had the summer to care for my grandson who was scheduled to start day care in August at just under three years old.

He was ready and I was grateful to have been able to complete my commitment to my kids. In the meantime, my daughter was pregnant again and I would have a few months off before becoming a caregiver again. I had moved my mom into an assisted living facility and she was as okay as she could be.

I wished living together had worked out but the combination of everyone’s needs, including mine, was just too much. After our Florida trip, our whole family released our collective breaths and tried to enjoy being together with our relative good news. The next big event would happen in November. I was still in my mental trench, studying, learning more.

Michael was in his summer mode, exercising, gardening and tweaking his classes for the following year. Our relationship was strong and intimate, peppered by our life-long issues of different style and speed modes, but resilient. We made a good team and we moved forward.

Me and Michael, 1972, at the wedding of our friends, Pam and Rich. I wish the photo from that 1972 wedding showed more details of my floor-length …

The Way of the World

I wish the photo from that 1972 wedding showed more details of my floor-length dress, which for several years, was the one I wore to all the formal events in my life. The fabric was crepe, the soft kind, colored blue/gray, with watercolor-like yellow and orange flowers splashed like modern art in its haphazard way, from bodice to ankle. The neckline was plunging because why not? That style was flattering for my frame. Wearing this dress was one of the first things I remembered when I got a text message yesterday, from my friend Brian, who was informing me that our old pal Allan had died. These days, messages and phone calls like that are arriving more frequently. Aging will do that. The “way of the world,” as I wrote to my other friends, Maurine and Mark, with whom I was discussing this latest death. But back to the dress story.

If only I’d had the presence of mind to carry a camera with me to so many memorable occasions from what I guess I’d now have to call the olden days. Although I’m sure that someone, somewhere has photos of me, or Michael and me, stashed in a fifty year old album in perhaps a closet, I only have the mental snapshots of these gatherings from back in the day. I suppose I’m lucky to have as many as I do. My dress and I were invited to the wedding of Paul and Mary Jean, in or near Chicago, in what I think was mid-February, 1977. Michael was a groomsman. So was Allan. Their guy crew was boisterous, to say the least, primed to party well before the march down the aisle ever began. When that procession started, the wedding party was making their way, for the most part, quite successfully, to join the bride and groom at the altar. That is, except for Allan, who had passed his alcohol/drug consumption limit well before the main event and subsequently, crashed to the floor in the midst of everyone. A flurry and scramble ensued to rouse him and get him to his feet. Quite simply, he was heavily intoxicated. I’m pretty sure he didn’t make it down the rest of the aisle. When the ceremony ended, I remember Michael scooping me up, pretty high himself, and flush with the romance of it all. We’d been married the previous May, and despite five years of living together, were still in a honeymoon phase. At least usually…On this night I myself was mostly normal, never having been a big drinker or stoner, despite the celebratory event. I think I always felt best when I had my wits about me. And therefore I was selected to drive Allan, in his car, back to Urbana, 130 miles south, where I could drop him off at the McKinley Health Center, a student service at the University of Illinois.

Allan was always a bit of a hypochondriac. He carried a smallish leather bag, similar to a cosmetics carryall, only his was filled with prescription bottles and health supplements, none of which stopped him from hammering himself with drugs and alcohol. I keep thinking how that night we were all worried about whether he had epilepsy, but I’m not sure he was ever actually diagnosed with any medical disorder. In any case, I was really nervous about that drive, on a cold, wintry night with a person who was periodically awake or periodically passing out next to me in the front seat. Would we make it home with Allan in one piece, albeit a marginally okay one? Well, of course we did. I can still feel myself watching him as he stumbled toward the entrance of McKinley, on Lincoln Avenue, a bit wobbly but assuring me he could get himself admitted, to be held for observation for at least a day. An unforgettable experience.

I have more memories of Allan than that one. For a period of time we revolved into and out of each other’s lives. He was in relationships with some of my friends. He was a musician and our social group often attended his concerts. He had a dry sense of humor and sometimes could be quite caustic. One evening when he was again intoxicated, he made a physical advance toward me which was out of line and also stupid, as I’d been with Michael for years. Those are the images I remember most. Eventually he moved to Chicago, went to law school and had a life. Over the years I saw him infrequently, when we’d head to the city for visits with family and friends. But in truth, our friendship became more peripheral to my life as I was busy having children. And all that is entailed by that life change makes socializing with dozens of people, especially those who don’t live nearby, tough to manage. My crowd was thinning. Eventually Allan moved to California which is where he died. Although I hadn’t seen him in a long time, he still remains stitched into the tapestry of my life that extends out behind me. The fabric that still lies before me has a smaller population than there once was – that’s the way of the world.

I’m not new to the absences of friends and loved ones. The parade of my losses runs on a path parallel to the weavings of my life. My baby cousin Iris, dead when I was 13. My cousins Eliot and Dennis, both dead by suicide, in their 20’s. The tragedy of my beloved friend Fern’s death at 37, after being close for 30 years, can still wrack me with grief. My grandparents, parents, brother and sister, aunts and uncles are lost to me now. Julie and Pat, the women who along with Maurine, were part of my posse, all the way through college and well into our 60’s, are both gone.

Me with Julie and Maurine, Summer 2018.

And the most intense passing for me of course, has been Michael, eight plus years ago, after being my life’s love for 45 years. I’m not sure I’ll ever become completely accustomed to his sorely missed physical presence. The more mystical inexplicable feelings, sensations and dreamlike moments involving him are a welcome mystery in my little universe.

My job is to go forward now, aware that fewer moments are ahead of me. I try to squeeze the most out I can get out of every day. None of us gets to know our destiny which I believe is probably a good thing. With time, more Allans’ deaths will be reported to me by someone or other. Except for the little bits of us in each other’s orbit that I remember about him and have chosen to share, everything between us would be unknown or forgotten in this complex existence. But in the end, I don’t believe that matters much. The truth is, we are all just passing through. Whether we consent or not, that’s just the way of the world. I’m getting accustomed to it.

Robert Redford – 1936 – 2025. Has there ever been a more beautiful grin? When I woke up two days ago, I checked my inbox as I always do, before I …

Icons

When I woke up two days ago, I checked my inbox as I always do, before I swing my legs over the side of my bed to rise. I think I’ve developed that habit during recent years, to still be in the relative safety of my bed while reading the potentially scary headlines of the morning. That way I don’t get knocked off my feet by anything too awful. On this particular morning, a couple of emails announcing the death of Robert Redford at age eighty-nine were staring me in the face. In recent years, I’d seen photos of him as he advanced into old age. I knew that one of these days, this fit, athletic person would succumb to the inevitable, as is the way of the world for all of us living creatures. But I lingered longer over the announcement of his death than I do over most others, which are turning up at what seems to be rapidly increasing frequency these days. One of the hazards of aging. Anyway, he was one of the public icons in my little life. And while I thought about how unlikely that was, considering the men I usually find attractive, it was absolutely true. Fittingly, both of my kids sent me condolences within a short time that morning, knowing that for me, his death would be important. How did that happen?

My mom, Dorothy the dancing queen, is probably the original impetus behind my love of movies and actors. For as long as I can remember, she regaled us kids with tales of her passion for film, especially dramas and musicals, and told us of all her favorites, women and men alike. We were told her many stories of finding a nickel, or ten cents, which led her to sneaking off to the neighborhood theaters for some dreaming, a welcome relief to her otherwise regimented life of daily cleaning after school.

Maybe she attended one of the two theaters in these photos, or maybe she went to the Vision or the Harmony, which were located right on Division Street, close to her home. She loved the big song and dance numbers, and most especially the movies with a dramatic love story twist. Fred Astaire was her ideal dance partner and she felt sure that she could easily fill the shoes of Ginger Rogers or Eleanor Powell. She was light on her feet for sure, and for the longest time, she was the go-to dance partner for me and my younger sister. In another life, maybe those dreams could have been hers. And then, there were mom’s swoonworthy choices in leading men.

I feel like I always knew who these screen idols were, like the way you know the faces of family members. Mom talked about them all, and so vividly. Accompanying those handsome faces were their background stories, all the Hollywood gossip about their personal lives and complicated acting histories. Mom’s youth was short on adventure and exciting experiences. The celluloid world provided relief and entertainment for her.

Later on, she shared all this with her kids, an abundance of tales for us kids, mom’s eager audience. I was a willing participant. Her interests became mine, at least until I grew old enough to cultivate my own. One thing about my immersion in mom’s world that stayed with me was her obvious preference for brunettes. Until Robert Redford came along, I was never attracted to blond men. He remained the one and only exception to the crew I inherited from Dorothy, and the crew I developed for myself. And the truth is, that despite the fact that physical attraction is generally an element of crushes, I found myself always wanting a bit more than the obvious. I liked artists who had something more to offer than a pretty face. Redford would meet that criteria.

I’m reasonably sure that I saw the above-referenced Alfred Hitchcock episode when I was in high school, as well as movie “The Chase.” I’ve certainly seen them since those early days. But timing is everything, including the moment you realize that some random movie guy might become important to you. My Robert Redford moment happened in my sophomore year in college, the year that I first saw “Butch Cassidy and the Sundance Kid.” That year, 1969, was a big transitional time for me. My longtime high school boyfriend had broken up with me after we’d tried staying together while I was away at school. That fall, I was on my own, casting about for a different way of being me, letting go of the security blanket of being my high school self. I wasn’t exactly sure how much I actually liked that me, but I understood the rules of who I was. After years of getting there, it was time to try something else. Away from home that autumn, my mom suddenly required surgery on her thyroid gland. I knew that my dad was lying to me when he said she didn’t have cancer, in the hope that I’d still be able to concentrate on school instead of worrying about her. Earlier that year, my maternal grandfather had died. I felt like I was lurching into adult life with all these significant and decidedly grownup concerns. Still, I’d started dating random people, like I was supposed to do. Moving on, or branching out, it was called. On one of these dates, I went out with a redheaded boy, whose name I can’t recall, to see “Butch Cassidy and the Sundance Kid.”

We didn’t have a car so we walked a long way to the theater. I remember having trouble being interested in anything this guy was saying and being anxious to have the movie start. And then there it was, finally, the highly entertaining film with its two gorgeous male leads, some snappy humorous dialogue and an interesting, albeit historically inaccurate adventure tale. I’d been a Paul Newman fan for a while, but by the time the show ended, I’d fallen for this golden California boy with the killer grin. On the walk home from the theater, perhaps emboldened by the sarcastic banter of the three main characters, I criticized basically everything my date said to me that night. To my surprise he called me the next day to say no one had ever spoken to him quite the way I had during the previous evening, and would I like to go out again sometime? A firm no to him and a yes to Redford.

Later that year I saw “Downhill Racer” in which Redford played an individualistic, largely unsympathetic, and troubled skier, which I thought was a brave choice for someone who could easily trade on his looks as a romantic lead. All the more reason for me to like him. Between 1969 and 1972, in real life, I fell in serious love for the first time. I met Al, with whom I had a tempestuous relationship that involved multiple painful breakups and reconciliations. In late 1970, during one of those breakups, I briefly got involved with Dennis, the closest person to a Redford lookalike I ever had in my romantic life. In 1971, I met Michael, who became my best friend and the following year, my eventual life partner and ultimately husband, until death did us part. Michael was also my movie partner. We saw “The Candidate,” together, which was released in 1972, followed by “Jeremiah Johnson,” two of our all-time favorites. In 1973, “The Way We Were” and “The Sting” were released. “The Way We Were” rang all my bells as I identified with Barbara Streisand’s activist politics, and the ultimate schism between hers and Redford’s character, which reminded me of the sad ending of my relationship with Al. That painful passage took a toll on my emotions that left a permanent scar on innocent me. I still think of those times when I re-watch that movie. “The Sting” was just sheer entertainment, reuniting Redford and Newman for a rollicking good time.

During the mid-to late ‘70’s, Redford made some of my favorite films. They were “Three Days of the Condor,” a movie about the dark missions of the CIA, “All the President’s Men,” about the Watergate expose by the Washington Post, and “The Electric Horseman,” about the callousness of the insurance industry. By that time, though, I was getting more interested and impressed by where Redford was putting his energy outside of acting. He had developed into a passionate environmentalist and joined the board of the Natural Resources Defense Council, an organization committed to protecting the planet and every life on it, and the mission of fighting climate change. He would serve on that board for decades. Also in the late ‘70’s, he started the first Utah film festival, dedicated to showcasing and supporting independent filmmakers, which eventually became the Sundance Film Festival. He developed the Sundance Institute, the umbrella organization for the festival and which continues to foster independent voices and stories outside the Hollywood system. Redford had, to his credit, grown well beyond any one-dimensional movie star role. I admired him, along with other public figures who used their celebrity to work for causes that benefited so much more than their personal fame and fortune.

As an actor, I appreciated Redford in some movies that extended all the way into 2017. “The Natural,” “Out of Africa,” “All is Lost,” and “Our Souls at Night,” feature fine, nuanced performances by Redford, newly acquired wrinkles and all. I thought his relentlessly authentic appearance was a badge of honor in these days of Botox and plastic surgeries. And I greatly admired several of his directorial efforts, especially the brilliant “Ordinary People,” “A River Runs Through It,” and “Quiz Show.” Redford stretched himself personally and professionally. An impactful example of how to live a dynamic, evolving life.

I am full on into my adult life. What I’ve carried along with me through my journey forward are a number of icons who are like silent partners in my world, in the background, emerging intermittently, sometimes for entertainment, sometimes for comfort, sometimes for enlightenment. On the day Robert Redford died, I had five of his movies on my DVR. I always have some handy for an especially dark day when real life becomes too hard to manage. My mom is one of those icons too, not a public one, but private, hovering in the back of my mind, her influences still apparent to my grownup self.

And then there’s Michael, always a great sport about my movie crushes. And why not? He had his own favorite actresses, just like lots of we movie-lovers do. Before he became a teacher, Michael owned a record store which, in addition, to vinyl, CD’s, cassette tapes and the like, often received promotional items from the record companies. These included advertising specialties like T-shirts and posters. I could never quite figure out what we were supposed to do with all the stuff he brought home. Periodically he’d have items which were autographed which I suppose he thought might have a purpose one day. Sadly, he died before he ever had a chance to do whatever he had in mind. After some time passed, I decided to go through the over 2000 posters that had made their way into my basement. I unfurled them, one by one, out in the garage, to keep the dust they’d accumulated from blowing through the house. Most of them were a standard size, the kind you could frame and hang on a wall. But suddenly, I felt one that was heavier and longer than that. As I slowly unrolled it, what emerged was a 10 feet long picture of Robert Redford’s head, his beautiful smile so big it was almost scary. I laughed and laughed. That Michael. That Redford.

Recently, in my world, it’s seemed like there’s been a rash of life-threatening medical diagnoses among the people I know. They’re about equally …

Triggers, What Ifs and Glimmers

Recently, in my world, it’s seemed like there’s been a rash of life-threatening medical diagnoses among the people I know. They’re about equally divided between cardiovascular issues and cancers. We’re in the age range for these problems, at least most of us. I empathize deeply with these people and their loved ones. I try to help because I get how it feels. Hard and lonely. Thirteen years ago, my life changed profoundly, with my husband’s cancer diagnosis, a cancer we’d never heard of and which was classified as an “orphan cancer” because of its rarity. That diagnosis altered our universe in one second. These many years later, as I try to support my friends who are navigating their new situations, I often re-live the journey we began in the spring of 2012. In psychology lingo, I get triggered. Triggers are definitely a challenge. And then there all the what-ifs. Those possibilities still nag at me as I remember the moments when a questionable decision made by the medical people, could have made the difference in Michael’s outcome. These memories are still so vivid to me, especially at times when I’m trying to provide solace to a struggling friend. Such tough feelings to manage. And yet, over the years, there are also the helpful glimmers, those magical, not easily understood moments that temporarily stop us in our tracks with the pleasure of them, or transport us back to the best of times. They help to balance the tough parts of experience that are forever in the fabric of our lives.

You wouldn’t think that this computer model of Keytruda, the brand name for pembrolizumab, an immunotherapy drug that’s currently approved to treat over twenty types of cancer, could be an emotional trigger. And yet it is for me. Advertisements for this wonder drug show up on television commercials every single night where I live. Back in May of 2015, three years into Michael’s cancer journey, pembrolizumab was being used in clinical trials for melanoma, but not for his skin cancer. In January of that year, we had tried to get Michael into a drug trial, a drug also in the same immunotherapy family as pembrolizumab, which actually was for his lethal skin cancer, Merkel cell carcinoma (MCC). At the moment he applied, he had no visible skin tumors, a soft tissue requirement which caused him to be ruled ineligible for the trial at the time. What an irony. Michael’s MCC, once a small facial lesion, had metastasized into his bones, which were not considered accurate measurable targets for the success of a drug’s action. When we were told of his ineligibility, the oncology nurse actually said, “you need to go home and get sicker and reapply then.” What a slap in the face. Only a few months after being denied entry into the trial, his health was rapidly deteriorating, with cancer spreading throughout his body. He was sicker, all right.

Finally some tumors, indeed soft tissue, were visible on his head and neck. But by that time, going through the rigorous process of applying for a trial was out of the question, especially since it was taking place at a facility three hours from home. Michael was so sick, he was too weak to travel. His oncologist, finally completely frustrated with the system, made a desperate plea to the drug manufacturer for pembrolizumab, brand-name Keytruda, as a compassionate care prescription, sometimes given when a patient is out of treatment options. That request was granted and in June, Michael, at the edge of his life, began an every 3 week infusion regimen.

Although the first rounds of treatment caused an exhausting immune response, after two infusions, his visible tumors began to shrink. After three treatments, those tumors vanished. In August, a PET scan showed that the cancer in his bones had shrunk by over 50%. And by December, his next scan showed NED, no evidence of disease. A miraculous result. But then, out of the blue, a regularly scheduled blood test revealed extremely elevated liver enzymes. The doctor canceled the next infusion, concerned about potentially dangerous liver damage. We went round and round about withholding the Keytruda. The drug’s effect had been miraculous and now it was going away.

At the same time as this episode occurred, Michael had an abscessed tooth, for which he was taking a strong antibiotic and painkillers. Decades earlier, he had a liver enzyme flare after being treated with powerful pain meds for a herniated disc. The flare died back after he completed his treatment. How could we know which drug was actually causing this current liver flare? The Keytruda, the antibiotic or the pain meds? Maybe a combination. Yes we knew, he needed a liver. But we also knew Merkel cell would kill him. Eventually, we all agreed that after his enzymes receded back to normal levels, the doctor would do a half-dose drug challenge with the Keytruda, to see how Michael’s liver would respond. But shortly thereafter, this oncologist, our second one in three years, followed the path of his predecessor, our first oncologist, who’d left our clinic for a new job. Our new doctor, the third oncologist who replaced him, was a much more conservative and timid practitioner. No amount of cajoling could convince her to resume treatment, even as a challenge, unless Michael had new growths, inside or out. So there we were, knowing that the odds of surviving this disease beyond a few years were terribly low, in this new limbo of no treatment at all. Keytruda wasn’t a cure; rather it had a delaying effect on cancer growth. By now it was January, 2016. We went back to scans every three months, interspersed with begging to restart some infusions. I felt whatever is beyond frustrated.

But I digress. After Michael’s initial diagnosis and treatment in 2012, which unearthed the fact that his initial MCC lesion, located on his cheek, had spread to a salivary gland and two lymph nodes. The recommended treatment was surgical removal of all the cancerous tissue and 30 rounds of radiation to his head and neck. After following that protocol, two months later, he had one full body scan to look for any residual cancer. That scan was negative for disease. But cancer is sneaky. Especially Merkel cell. At subsequent skin checks, we asked why Michael wasn’t being scanned more frequently, like melanoma patients with metastatic disease. The answer was that for his stage cancer, no further scans were recommended. I remember asking, “how can there be a protocol set in stone for an incurable disease?” The doctors weren’t thrilled by my badgering.

Michael was the first patient at our local clinic to be treated for Merkel cell cancer. A team of doctors was assigned to his case, a head and neck cancer surgeon, an oncologist and a radiation oncologist. We got a second opinion from an MCC specialist in another state, with whom we met with for a consultation/evaluation. He was the physician/researcher who had written the protocol for the National Comprehensive Cancer Network. His tumor board agreed with the treatment plan at our local clinic. Meanwhile, our local oncologist recommended a follow-up course of chemotherapy after the surgery and radiation were performed. He was outvoted by the rest of the team, as chemo wasn’t in the protocol.

Finally, a year after his only previous scan, the doctors agreed to order another scan, for peace of mind, they said, one year after the first one. That scan showed that his Merkel cell had gone rogue, showing up in eleven bones in his body, with not a skin lesion in sight. He was completely asymptomatic. His surgeon didn’t believe it was really the same cancer until a bone biopsy confirmed it. But the surgeon was no longer the team leader. That honor now fell to the oncologist who would finally get to ply his trade – prescribing toxic infusions.

So I’ve gone the long way around the block on this reflection, leaping from 2015 back to 2012 and 2013. Now forward to January, 2016. Michael seemed to be holding his own as we cautiously proceeded through the year. The scans continued to show no evidence of disease. While we tried to enjoy this respite, anxiety was a constant companion. From late 2012 to late 2013, Michael seemed to be in remission. Then came the dreadful bone metastases. What else could be coming down the road? In September, Michael developed a terrible case of shingles which lurched across his chest and back. Neither of us was confident that his immune system had totally conquered MCC, with no treatments on board. And by the end of the year, new symptoms appeared. Loss of appetite and intermittent periods of confusion, along with no sex drive. More scans, more negative results. Baffling. Then Michael developed tremendous fatigue, accompanied by disrupted circadian rhythms and ultimately a flattened personality. I was literally calling the oncologist every day as my partner was becoming unrecognizable. It was January, 2017. I was driving Michael crazy by insisting something was wrong with him while he stubbornly insisted he was fine.

On January 31st, I finally persuaded him to come with me to the emergency room where I demanded that someone order a brain MRI. Shockingly, a doctor who listened to me carefully, believed me, and ordered the test. Not once, in over 4 years of dealing with MCC had any doctor ordered even a baseline brain MRI for Michael, a procedure commonly done in patients with metastatic melanoma. That evening, the results came in and we absorbed the awful blow of a diagnosis of carcinomatous meningitis, a brain filled with mushy cancer. Which of course was MCC. Each time that monstrous disease was left to its own devices, it re-manifested itself in a new and different lethal way. This time, the prognosis was 4 weeks. Michael, still wanting to stay alive, opted for whole brain radiation. And his oncologist at last offered Keytruda as a desperate measure. We stayed in the hospital for 32 days and nights before Michael was released. He survived for 17 weeks, longer than anyone imagined. He died at home, which was his wish, as well as mine, although it was an enormous challenge. In the end, he was gone and I remained totally alive, along with my litany of what-ifs.

Michael and I each had a dermatologist appointment in 2012. Mine was in late March, his was in late April. When we noticed the small, innocuous reddish spot on his cheek, I suggested that we switch appointments so he could go first. He didn’t think the little lesion looked as bad as other spots he’d had removed. So he waited. What if he’d gone a month sooner? Would the earlier removal have stopped the metastasis? In late July, 2012, what if Michael had taken the rounds of chemo the oncologist recommended which was rejected by the cancer team? If there were only a few cells floating around, undetectable, would the systemic treatment have wiped them out? What if Michael has been accepted into the clinical trial in January, 2015? We were told he wasn’t sick enough. Given his excellent response to Keytruda, would that other targeted immunotherapy drug have knocked out his relatively light cancer load at that time? Who knows? What if Keytruda hadn’t been halted for an entire year? If his liver enzymes had normalized, what if he could’ve gone years further without that dreadful brain cancer? What if, what if, what if? Over eight years have passed since Michael’s death. But here I am, still asking the questions whenever I’m triggered by a television ad or the emotional devastation of a friend or loved one coping with similar situations. In the midst of the last weeks of Michael’s life, as I sometimes wondered aloud about these questions, my son looked at me and said, “you know you can’t cure cancer, don’t you?” That took me by surprise and I have to admit I wasn’t exactly sure I couldn’t if I tried hard enough. Maybe the biggest what ifs of them all. Unless my mind goes, I suspect I’ll be rerunning this part of my life forever.

But as time goes by, my what ifs pile often has a more benign side than those involving the hardest part of my life. For instance, what if my parents had decided to stay in Sioux City instead of moving back to Chicago when I was seven? What if I hadn’t skipped a year of school? What if I’d been a more focused student? What if I’d had a camera when I went to Europe instead of having no photos but the ones in my head? What if I had been a conservative? What if I hadn’t met Michael? What if I’d been too shy to call him and invite him to my house so we could be friends? Those questions are a lot easier to handle than my angry cancer ones. And with time, I’ve learned to give myself a break every now and then to just let my brain rest and my mind wander.

I’ve realized that in the deepest, most essential part of me, despite all the hard and dark stuff, I have a positive attitude and strong life force. So in the midst of the jarring triggers and the challenging times with people going through their own painful times, I get those glimmers that are soothing, joyous, peaceful and flat-out good. They’re the songs that bring back a moment in time, laughing ones, poignant ones, sexy ones. They’re the times I’m swimming along and suddenly I envision Michael swimming toward me, his hair parted crazily in the middle with that smile he had, like the Cheshire cat from Alice in Wonderland. They’re the birds winging it through my yard and the butterflies sipping nectar from my flowers. They’re in the clouds and rainbows that never bore me, even if I’ve seen them all before. They’re in chats with my grandchildren and intimate conversations with my two kids. In these times of troubled friends, a troubled country and all the heaviest parts of life, I get these glimmers, every day. They’re keep me going. So now, for the moment, I’m done reliving the worst of times and hoping for a few glimmery dreams when I finally close this deep dive into the trigger. Whew.

It’s been a week. After a few pleasant days of lower temperatures and less humidity, the air is once again thick and stifling. For someone like me, …

Hell Week

It’s been a week. After a few pleasant days of lower temperatures and less humidity, the air is once again thick and stifling. For someone like me, who runs hot, the atmosphere is oppressive. Within seconds of being outside, I’m pouring sweat. I feel disgusting and look like I feel. When I try working outside, the mandatory layers of sunscreen and insect repellent add insult to injury. Sitting inside for the bulk of the day isn’t good for my body or soul. I’ve still gotten my swims in, but an hour in that sanctuary is not enough to balance all those other inside hours, when my mind seems to skitter from thing to thing.

But let’s get real. These physical discomforts are hardly worth whining about, especially in comparison to what other people are going through, in more places than I can count. After all, I’m not starving while dodging bombs and drone attacks. I’m not starving at all, because there’s no famine where I live. Rival drug cartels are not shooting up the streets in my neighborhood, making me fear for my life. I’m not afraid that vans filled with armed, masked men are going to track me down, throw me to the ground, tie my wrists with zip-ties and disappear to me to civil war-torn countries. At least not yet. Yes, I’m crabby because of merciless weather, but the fact is that I think I’m getting worn down by too much bad news. Every day I tell myself to stop paying so much attention to all the latest infuriating articles which show up in my morning email. I know it’s so toxic for me. And I think I actually have stopped reading and watching as much as I once did, back when the jaw-dropping first presidency of 45 began. Back then, in early 2017, even as it became clear that Michael’s cancer trek had finally taken its last dark turn, I was doomscrolling constantly, trying to navigate the shocks of that mad administration. Ha. What did I know? Here I am, eyes popping at every latest soul-crushing news story illustrating this seemingly inexorable march to the end of democracy, such as it is. Or was. All in just a few short months. Although I know enough about history to understand that what’s happening now isn’t forever, at age 74, will I still be around to appreciate the recovery from all the destruction? Unclear.

That’s the macrocosm. And then there’s the microcosm. The whole mortality question is certainly getting harder to ignore in my 70’s. In the past few days, four people I know, some more intimately than others, have all wound up in the emergency room and beyond, with cardiac and circulation issues. Swollen legs and insufficient blood vessels seem to be making the rounds. I find myself checking out my ankles a lot, looking for the telltale puffiness indicating water retention, which can itself be a sign of congestive heart failure. Sometimes you just don’t know when it’s your body’s turn to say your lease on reasonable health has just expired. Even more concerning is the condition of one of my dearest old friends, who’s waiting for his newly unearthed chronic lymphocytic leukemia to be staged. That cancer can be anything from a slow growing condition which can be survived for many years, to one that storms quickly through the body. The uncertainty is hard for him and his family, along with those of us who shared so much life together. Nothing about these situations is surprising or unexpected. But it’s still hard. In similar moments, my mother, who survived a couple of cancers, poorly controlled diabetes and numerous other issues, would periodically trot out her gallows humor and say, “look – you leave this life the way you come in – toothless, bald and alone. That’s it. Period.” One of those lines I think I’ll always remember.

In the hope of distracting myself from the weight of the current news and personal crises, I decided to watch “The Roosevelts – An Intimate History,” the film made by Ken Burns for PBS back in 2014. Seven episodes long and clocking in at 14 hours, I found myself utterly consumed by this fascinating wealthy family, with its multiple branches and participation in varying political parties. The three principal characters, Theodore, Franklin and Eleanor championed progressive domestic policies, navigated world wars, laid the foundation for most of the institutions under attack by today’s current administration, and remained influential in American politics for 80 years. I wasn’t completely uneducated about them when I started this series but I learned a lot I didn’t know. Imperfect as these people were, their obvious passion for improving the lives of everyday people was so inspiring. And different from now. I think this summary by a journalist best describes how I felt after watching it.

Hank Stuever, critic at The Washington Post, writes, “Let’s start with the end. When it’s over — when you make it through the marathon that is Ken Burns’s beautiful, seven-part documentary The Roosevelts: An Intimate History, … you may find yourself with a lingering, nebulous grief. You’re sorry it’s over. You’re sorry they’re over. You’re sorry a certain expression of American ideals is, or often appears to be, completely over.”

If escapism was what I was looking for, I can’t say I succeeded in meeting that goal with this particular choice. I was frequently in tears while watching this show, way more than I usually am in what I’d call my regular life. Crying has never really been a go-to emotional response for me. When people would talk about how cathartic a good cry was for them, I could never quite relate. I usually feel terrible after I cry, swollen-eyed and snotty, more often than not with a headache, and zero energy for anything other than sleep. My more customary response to the hard parts of life is getting angry and active, ranting around, or hurling myself into some tiring task or other until I burn off the bad feelings. But I guess I was overdue for the style I usually shun because crying it was. In the midst of it, I was kind of fascinated by this full-up well of emotion that needed to be released. I know that for a long time I’ve felt that my grief process about Michael’s death has been entwined with the pain I feel over the bigger picture, the profound alienation I feel from the MAGA universe and all that it entails. Throughout my life, I’ve always felt like I never really belonged anywhere, always somewhat out of step, even with ideologies, organizations or groups with which I had some natural affinities. But lucky me, when I almost instantly became best friends with Michael when I was just twenty, I finally felt like I fit somewhere. No matter the hard times, that comfort only grew over time.

Even now, with him gone, the powerful framework we built for so many years has still been enough to sustain me on my own. And yet. When I sat there sobbing over the Roosevelts, I realized that despite my resilience, I retain mental and emotional vulnerabilities that add dimension and depth to my fully adult self. Uncomfortable, yes, but I still believe that’s a good thing. For me, becoming a person incapable of ever surprising myself again would feel like death. I recognize that I can still have more going on inside me than I sometimes realize. That means there’s yet more room in this life for me to continue developing and to understand myself in relation to my ever-changing circumstances. Nothing new means being stuck. For me, being stuck is worse than periodic sobbing, whether I particularly like it or not.

I guess I have to chalk this week up to what I’ve continued to learn over the years. People are complicated and layered, with multiple aspects of personality and character operating inside them, sometimes in tandem and sometimes apart. Often, they are in the dark about themselves, intentionally or not. Not everyone is interested in looking back to trace how they got to here from there. But I always was. In my late 30’s and early 40’s, I was seeing a therapist who was helping me develop better management skills at coping with my mom after my dad’s death. Figuring out that the parent/child dynamic between us had been severely compromised for a long time, was knowledge that I was only vaguely unaware of – that is until this professional helped me think my way to the core of my problems. She presented me with options on how to confront difficult circumstances in ways significantly different from my previous style. And most importantly, she helped me realize that my mom would likely not be interested in my process and thus, never be able to put herself into my shoes. Recognizing that the only change I could expect was my own was significant. I didn’t want to be limited in the way that my mom was so I needed to accept responsibility for myself. My task was to break old patterns and get myself unstuck. One really great experience I had during my therapy involved bringing Michael along to one of my appointments. My counselor felt that having someone close to me participate in conversations about my issues allowed her, and ultimately, me, to view my problems from different angles instead of just my own. She likened this process to walking around a statue, being able to see it three-dimensionally, instead of just head-on. I learned a lot from hearing Michael’s perception of me during my conflicts, instead of only looking straight into a mirror and seeing myself. That lesson stuck with me. Stepping back from the moment and changing my own behavior helps me navigate the world. And there will always be the need to adjust. After all, I think that no matter how well we think we know anyone, including ourselves, there will always be surprises and secrets to discover. Hell week’s reminder and lesson learned.

The paintings by Hovak remind me that humans are more than what’s on the surface.

The sheen on my arm from the layer of sweat that appears every time I move during this heinous heat dome. For a person like me, who believes that …

Thoughts From the Heat Dome…and the Corn Sweat?