Sifting Through The All The Feels

Dad, my daughter and me

Yesterday was the 33rd anniversary of my father’s death. This photo was taken a little less than two months before he died, in what was a brief cancer experience lasting only from June until September. Dad was a finicky guy, unwilling to go through the many degradations of cancer treatment. After only one round of chemo, he opted out. Oh, 1989 seems like another universe. That year was packed with so many significant events which came on the heels of two dreadful suicides, one my young cousin’s in 1987, and the other, my oldest friend in 1988. I knew I’d changed internally after surviving those two traumas. Moving forward, I had no idea that the following year, both my parents would be diagnosed with cancer within five weeks of each other, following my second stint as Michael’s campaign manager in his successful run for alderman. Four years earlier he’d lost his first attempt by only two votes, but we were smarter during the 1989 try. On the heels of his election came my parents’ illnesses. A few weeks later, Michael’s long-aching back gave out. After three weeks of his writhing in pain in our bed, me sleeping on the floor to give him room to toss and turn, I woke him one morning and announced I was done with this mess in the middle of working, helping my mom and dad, dealing with our kids and feeling a lot like Edith Bunker from the television sitcom “All in the Family.” We got him dressed, into the car and went straight to the emergency room which contacted his orthopedic surgeon who arranged for a laminectomy surgery the next day. My dad was in the hospital at the same time, being rehydrated. While we waited for Michael’s room, I wheeled him to see my dad – Michael looked right at him, didn’t recognize him and peered at the person in the next bed, trying to figure out what happened to dad. An extraordinary shock. After a storm the day after Michael’s surgery took out a huge oak tree on our parkway, sending giant branches through our brand-new roof, I felt tougher than a piece of petrified bark. What a succession of nightmares. I was 38 and thought nothing could could penetrate my thick skin after experiencing so much of life’s cruelty. Of course I was wrong. I’ve survived much more since then, but have been shocked by the sudden rush of unexpected feelings that pop up unbidden, demanding responses. I’d thought I was prepared for anything.

The interior of “What’s Cookin,” a restaurant on North Lincoln Avenue in Chicago that we went to countless times as a family, when visiting my parents before they moved to our community.

Between 1972 and 1986, Michael and I drove to Chicago frequently to visit family and friends. We used to laugh about how my parents, living in a city with a plethora of gastronomic delights, tended to eat in the same half-dozen restaurants over and over. One of them was What’s Cookin’. Of course the owners and staff grew to know them, so when we showed up, our party always got seated fast. A big basket of bagels, bialys and soft challah bread was brought to our table, along with a tray of various pickles. The place was homey and we loved it. After my dad died, Michael and I continued to go back to the city periodically. On one of the first trips back, we decided to eat at What’s Cookin’. I think that was the first time I learned about the deep emotional ambushes that can catch you off-guard. All I felt in that familiar place, with its familiar smells and sounds was my father’s absence. I barely got through our meal, on the verge of tears and so terribly bereft. We got out of there and never went back. I think it went out of business but I don’t know when. After that incident which I tucked away in my mind, I often wondered what else would come my way that would unexpectedly undo me emotionally.

Apple Pork Festival – Clinton, Illinois
BroomCorn Festival – Arcola, Illinois

Years ago, in the decade before we had kids, one of the ways Michael and I would entertain ourselves on weekends, was to hop in the car to go exploring. We found state parks, small lakes and interesting little towns with bars that served great food. We also ran into random festivals about which we knew nothing. We listened to bands, ate fair and carnival favorites and perused flea markets that were part of the event. Michael looked for old tools, baseball cards and 45 records, while I bought okd books and started a pottery collection that I’m sure no one in my family wants at all. But we loved those days. We tried to take our kids along with us when they were little, but they got bored and tired. Eventually we quit going as life got busier and busier with the kids’ sports and music events taking up so many nights and weekends. When we finally had time to ourselves again, we decided to revisit those festivals which over time, had grown bigger with lots more visitors and attractions. When Michael was in his cancer years, he was well enough to attend these events a few more times. Those normal moments were so exquisite. You’d think we were off on a grand world tour.

Since Michael died, I’ve had that What’s Cookin’ moment in my head. How would I feel if I did this or went there? After a lifetime of sharing experiences, there aren’t many places in my community, the surrounding area or Chicago that don’t remind me of him. Lots of times the memories unearthed are sweet reminiscences that fill me with bittersweet feelings that are fine, manageable and kind of like your favorite bathrobe or sweatpants. They just feel good. Slowly during the last five years on my own, I’ve gotten back to almost every special place we shared multiple times, with no traumatic emotional moments. But I can be working in the garden, headphones plugged in when one note of one special song pops up and suddenly I can barely stand, dissolved in waves of grief that emanate from the deepest part of myself, so deep I can’t comprehend it.

This album by CTA, eventually to become Chicago, was released in 1969. “Beginnings,” one of its cuts, didn’t make a dent in the music charts back then. In June, 1971, the song was released again with “Color My World” as its flip side. This combo zoomed to number 7 on the Billboard Top 100 list, just in time for me to meet Michael that summer. By April, 1972, we were living together for what would be the rest of Michael’s life. We spent hours lying in bed, talking and listening to whole albums, not playlists. This one stimulates volcanic responses which I have to ride out like a surfer, trying to catch and hold a wave. I’m somehow still in this emotional vortex, somewhere in my being.

Beginnings

When I’m with you
It doesn’t matter where we are
Or what we’re doing
I’m with you, that’s all that matters

Time passes much too quickly
When we’re together laughing
I wish I could sing it to you, whoa oh
I wish I could sing it to you

Oh oh oh oh oh oh woah oh oh oh
Oh oh oh oh oh oh woah oh oh oh
Mostly I’m silent, hmm
Silent

When I kiss you
I feel a thousand different feelings
A cover of chills
All over my body
And when I feel them
I quickly try to decide which one
I should try to put into words, woah oh
Try to put into words

Oh oh oh oh oh oh woah oh oh oh
Oh oh oh oh oh oh woah oh oh oh

Only the beginning
Only just the start
Oh oh oh oh oh oh woah oh oh oh
Oh oh oh oh oh oh woah oh oh oh
Oh oh oh oh oh oh woah oh oh oh

On the road to Clinton this past weekend.

For my birthday this year, back in May, my son and daughter-in-law gave me the promise of a day of my choice, perhaps a trip to Chicago to catch a museum exhibit and then dinner at my favorite restaurant. At this point, my adult family members are all more interested in sharing experiences than in acquiring more stuff. For some reason though, every time we thought about going off to do something, an obstacle arose. A schedule conflict, rotten weather, just one thing after another. Finally, we got down to this past weekend, when the Apple Pork Festival was happening in Clinton, Illinois. I haven’t attended that event since 2016. I had a sense of reluctance about it, the kind connected to the potential for a negative emotional reaction when all the memories of my past times with Michael might erupt.

Strange as it may sound, I’d already had a trying challenge with the retirement of Roger Federer two nights earlier. We all seek our relief from the stresses of our daily lives. Watching Federer play tennis for the past 24 years was one of mine. That’s longer than the average distraction and one that’s carried me through tough times. Recently, I’ve had more deaths close to home, as is typical for people in my age group. Watching Roger’s emotional send-off was a bit like another one. But I know that in this life you have to adapt and move on, rather than getting mired down in what was. So late Sunday morning, off we went, adding my two grandsons to the mix as part of the outing.

I’d been there so many times before that the locations of everything unspooled in my head like a labeled map . As we entered the site, I was glad to feel no sense of sadness or despair but rather excitement about getting a funnel cake and sharing that experience with my daughter-in-law, who’s European and had never tasted this slice of Americana. Music was playing from the bandstand, also located in the same place as in the past. The tunes were mostly familiar, Allman Brothers, Pure Prairie League, Marshall Tucker Band, a lively mix on a sunny cool afternoon. Everyone was in good spirits, enjoying the atmosphere and each other’s company.

I only have one major place left unvisited, where Michael and I went for many years, sometimes with our kids and sometimes on our own. I’ve been thinking about it more and more often lately, mostly about all the great times we had there and about how much I’d like to see it one more time. I still can’t predict what stimulus might make my grief, now a normal component of who I am, come bubbling up when I least expect it. I guess that’s what living really is, being surprised by what feelings show up when you’re not prepared. At least I’m not just lying on my couch with a case of the vapors, eating bon-bons. That would be a disservice to me, everyone around me and especially to Michael, who wanted to be alive for every second, no matter what happened. Just still sifting through it all, day by day.

The Good, The Bad and The Realistic

Where I swim daily when the outdoor pool closes.

I was in the middle of writing the blog with the title above but I felt compelled to modify my original text. An incident occurred toward the end of my time at the pool today. For all the years I’ve been swimming there, a group of older women have been part of the daily crew. Women ten to fifteen years older than me. Over time, a few have died while others developed physical issues which now preclude them from this activity. One of the elders still at it, Ruth, is 86 and quite remarkable. She moves fast and despite some bumps in the road, has been a daily participant until recently. In the past few months her blood pressure has gotten iffy and she needed to get a pacemaker. She normally swims in the hour before me but today when I arrived, I knew she was still in the locker room because her car was in the parking lot. Ruth moves a little more slowly these days. At any rate, I was doing my after-swim stretches and chatting with another friend, when one of the other regulars swam over to us, saying there was an ambulance in front of the building. He couldn’t see who was being tended to in the lobby. I can’t see anything without my glasses but my friend who is taller than me, and who’s got better vision, said it was Ruth. Swimming was almost over anyway so we got out of the water. I decided to wrap myself in a towel to go straight to the lobby to be with Ruth, to offer help. Being alone with two EMT’s in front of a gurney is daunting for anyone, as well as lonely, She appeared to be suffering from vertigo as she’s had a few spells of lightheadedness lately. She’d also had her flu and Covid booster together, only two days earlier. Her son had been called and was on the way. My other friends came to sit for a bit. Eventually Ruth was driven home by her son as there are no real treatments for vertigo and she already has an appointment scheduled with an ear-nose and throat doctor on the books. One of the other friends and I arranged to get her car home. Later that afternoon, my closest buddy wrote to tell me she was glad I’d stayed to help out. I responded to her message with the following reply: “You know me – I never met a crisis I didn’t love.” As soon as I wrote it I was struck by the meaning of that comment. Through my life, I evolved, driven by both the need to be prepared to deal with crises, and the motivation of fear, to become the go-to person when life gets tough. I’m still thinking about how that happened. Now back to what I’d started writing, as both pieces are tied together and make so much sense.

Me – three months old

I don’t remember a single thing about myself at three months old. I’m in my eighth decade now and whatever I know about my baby life is what I heard from parents. Apparently I rarely cried, even when I had a diaper rash that turned my bottom fire-engine red. My mom said she wanted to nurse me when I turned my head toward her, but the doctors gave her drugs to dry up her milk and bound up her chest. When I became an adult, I told her that rejection was the source of any problem I’d had in my life. I think I was only half-kidding. I was generally cheery. I slept so well that most nights, my parents were scared that I’d died. They’d had different luck with their babies one and two.

Me – 6 months old

When I look at my eyes in these photos, they look happy, bright and engaged. What’s in us when we’re first starting in this world? Who knows? One day, I expect that humans will have ability to view a reel of everything that’s happened from their birth forward. Perhaps that’ll be a great adjunct to therapy. I’m a great believer in therapy, always likening the need to tune up a car, to the need to tune up your mental health. But that’s a different story. I have toddler memories, just some observations of the dog on the floor in the kitchen, next to me, watching dust sparkle in the light from the window, and observing my mom moving around and talking.

I have other memories from a bit later, being teased by my brother and sister who were, respectively, eight and over five years older than me. They made me toddle toward them at one end of my crib, moving away quickly just as I arrived and then doing it all over again. Not too much scary stuff. I think that my first few years must’ve instilled a strong sense of being loved and treasured in the deepest part of myself. By the time I hit ages four and five, though, I’d discovered fear and uncertainty, likely brought on by my mother’s hospitalization for a surgery. That brought her mother to town to care for us kids.

My grandmother

She was loud, gruff and she hurt my hair. She made pigtails which stuck straight out the sides of my head with teeny rubber bands that yanked at the roots. My brother snuck me into the hospital to see my mom, all drugged up and unbelievably, lifting her gown to show us her lengthy, bloody, vertical abdominal incision. That experience shook my foundation. I think I was already casting around inside myself at that early age, for what I’d have to call strategies, for coping with all the potential bumps in life’s road. I was no longer feeling safe. I suppose lost innocence is always tinged with some regret, but the truth is, those bumps arrived so quickly, regret isn’t a big part of my emotional equation. I wanted to be ready. I was what people call an “old soul,” stretching myself beyond my chronological age to make life better, mostly for people other than me. Ultimately I suppose I figured their benefit would lead to mine. I remember doing my best thinking at the top of a jungle gym like the one below, on the playground at my school. To this day, I can’t understand how I could climb so high when little, only to be fearful of heights in my later life.

Photo credit – Pinterest

One of the good things about being an old soul is that this constant self-analysis hums along below the surface of the face you present to the world. I wanted to be clear about myself, to know who I really was internally. I needed to feel a sense of control which seemed necessary in the uncertain scary world. That doesn’t mean I always liked my personal discoveries or that I always shared my truth with other people. But I learned to not let myself get away with much. I didn’t hide from me, didn’t lie to me, and was always trying to get to the heart of the issue. Any issue. And just to make sure I was keeping myself real, I wrote mostly every thought I had in my journals. That’s the bad part. I don’t get to pretend I didn’t think something or feel something, or to be either falsely proud of myself or falsely embarrassed by anything, because it’s all written down, right in front of me. I stayed in touch with the real me, warts and all. This came in handy for responding to the unexpected experiences that come along in life. I was the constant, with no huge unnerving surprises in my responses. Michael told me more than once, that I was the most singularly unchanged person he ever knew. I couldn’t decide if that statement was a compliment or an insult. I think it was a kind way of saying I was a control freak which I admit, works for me. After trying to stay ahead of the fear that haunted my childhood, I turned out to be a practiced, dependable sort, good in a pinch, able to maintain perspective with a pretty even disposition. I’ll never know what was built in from my beginning that got me here. Nor do I know what might be that event which undoes me. But I do believe I know a few things.

I read “The Worst Hard Time” years ago. An incredible story of life in the dreadful dust bowl years which, within that context, the title is true. In my world, however, I know that there are countless “worst hard times,” on both small, intimate scales and huge ones. When I was a girl, I thought the worst thing that could happen in my life would be the death of my parents. Over time, that fear receded. Everywhere, there were disasters so much bigger than a loss like that. There were wars, famines, mass murders, assassinations and natural disasters. I figured that out. I was just a tiny mote in a great big universe where all kinds of people suffered all kinds of tragedies. I still use that type of thought process to stay balanced. Not being able to do much about the large-scale crises made me focus on how to do something on a more manageable level. I learned how to be the person who sticks around to help when there’s an immediate problem. More importantly, all that internal probing and writing helped me stay calm in the middle of a crisis situation at hand. I can be calm and even-keeled during an emergency. I can go toward a problem instead of hiding or going the opposite direction. Somehow or other, after years of practice, I turned my vulnerabilities into strengths. I consider that circuitous route I took to be a good thing.

My brother’s wedding day

In the photo above, taken on my brother’s wedding day, there are thirteen members of my family. Today, only three of us are alive, me, my younger sister and one cousin. My parents, my grandparents, my aunt and uncle, my older brother and sister, and my young cousin are all dead. Other cousins, close friends, and lastly and most importantly, my lifelong partner, at least 45 years worth of my life, are also gone. Somehow or other, I remain, still living and managing to lead a decent life. From the good things to the bad, I have also become realistic.

Trump rally – Qanon salutes from audience – Reuters

The overall state of the world today feels like the worst hard time to me right now, exacerbated by the absence of my partner, who made shouldering the load so much easier. Now I think of the tough, scary things on the small personal scale, the deaths of many friends, coming in clusters these days as we reach more fragile ages, coupled with the political climate in which a popular autocratic movement, which limits human rights and is fraught with nativism and racism, seems like the worst hard time. Add in the climate change disasters, the violence and mental instability in the culture, and those miserable nightmares certainly enhance the sense of the worst hard time. The war in Ukraine and the threat of nuclear weapons thrown in that mix? I’m remembering the air raid drills of my childhood and wondering how we got back there? I watched the Ken Burns series called “The U.S. and the Holocaust,” which echoes with the same prejudicial attitudes I’m hearing now, attitudes that stretch back centuries, not simply the 20th century. Everyone should watch that series. Why are so many still back there?

Photo – Holocaust Encyclopedia

Realistically, I can’t do much about these weighty problems. I can vote and encourage others to vote. I can march. I can donate money to causes which are diametrically opposed to these throwback movements that would eliminate democracy. I don’t know yet what will undo my lifetime crafting of maintaining my stability when hard times come crashing in, uninvited. Will it be when I’m no longer healthy and able? Will the outside world finally shove me over the edge? Michael and I always felt that the one thing which would be the impossible for us would be the loss of our child, either one. Thankfully, so far, I haven’t had that most terrifying challenge. For now, I guess that all I can do is keep going toward the problem, wet bathing suit or not. I held Ruth’s hand while we waited for her son. I wrote an obituary for my old friend with no family of her own, because I’ve written my share before. One little act at a time, a good thing that came from the bad things that made me practical and realistic. Except I sure wish I could get Michael back. I can’t figure out any remedy for that one.

Be 278 – A Cancer Journey – The Brief Retirement – Chapter 5

With Michael’s “clean” May, 2014 scan in the books and the next one scheduled for August, we turned ourselves to the task of trying to live a normal life within the constant awareness of the cancer cloud that was now our ghostly companion. Michael had turned 65 and was finally Medicare-eligible. In the United States, the financial aspect of cancer is a whole other companion that makes its presence known in the midst of the physical and emotional struggles.

Every day of the infusion process, coupled with the cost of the chemotherapy drugs, amounts to a staggering number of dollars charged. Without insurance, you are definitely bankrupt and perhaps ineligible for treatment. With insurance, depending on what type you have, you can still go broke. In Michael’s case, the out-of-pocket costs were challenging. The terminology applied to chemo as a specialty drug, which meant extra payments in terms of his prescription plan, was definitely infuriating. The implication was that chemotherapy was a luxury choice. But the costs didn’t totally break us. With a cold eye toward the money part of cancer world, we chose a Medicare supplement plan, Part F, that would cover the portion of treatment that basic Medicare would not. That would include future infusions. One worry off the list.

Then we turned our attention toward how to treat time. The daily nonchalance of planning ahead had effectively been stripped from our life. Thinking about plans for the future was over. We were grateful for the reprieve from treatment but were keenly aware that every healthy day was a bonus after the previous November’s dire prognosis. We knew the cancer was still lurking at the cellular level in Michael’s body. Both of us were grieving the loss of our long-anticipated retirement. His family tree was populated by people who lived long into their nineties. I’d always thought it would be me who died first. In any event, we both thought we’d have at least a decade or two ahead of us. That future was gone. Our post-chemo trip to Florida had been magical. We both felt like as we long as we stayed there, we could block out all the scary real life issues. There had to be a way to get more moments like those. We made the decision to cash out part of his life insurance policy, pay off some bills and hit the road, whenever his health allowed it. We would squeeze our retirement into every spare minute we could wrest away from his disease.

But first, we had some issues to deal with at home. A close colleague of Michael’s who was diagnosed with gastric and esophageal cancer the previous September, was failing rapidly. He’d asked Michael to assemble a music playlist for his memorial which Michael was happy to do. But he wept for his friend and also for himself as he anticipated a life cut short, too early. Too early. When this fellow teacher died a scant week later, we attended that memorial which fell on my birthday. Both of us felt like so many eyes were on us as Michael still stood tall, while his friend had succumbed to his cancer in only ten months. A difficult, painful day loaded with glimpses of the future. But when?

We also helped our daughter and her family out when she had surgery on a cartilage-damaged knee. Being there for them in our normal parental roles felt normalizing. We babysat for the grandkids and contributed meals and other comforts. For short times we could forget the anxiety lurking in the background and just be.

I was still spending time on research, poring over scholarly articles, writing doctors who were principal investigators on pending clinical trials, and searching for news on any promising treatments. I even started gathering documents and scanning photos to prepare for a slideshow that I’d need for Michael’s celebration of life. My intellect and my emotional sides ebbed and flowed daily as I tried to simultaneously stay present while preparing for what I felt was the inevitable. A harsh way to exist, but the best way for me to keep my head above water.

We decided to make our next retirement trip a drive to the Outer Banks in North Carolina. The St. Pete’s Beach trip was a way to get Michael’s toes back into his beloved Gulf of Mexico, a place packed with many happy memories for him. Now we were headed somewhere neither of us had been before, still with the water component we both loved, but a place which for me, was one I only wanted to share with him as a first-time experience. My eagerness to go was obvious and Michael didn’t want to disappoint me. But I learned that his heart wasn’t really in it.

June 24th, 2014

We’re here in the Outer Banks on the northern beaches of Corolla. It is truly beautiful here. I enjoyed the drive down, especially through the Blue Ridge Mountains which are majestic and ethereal. But the drive was very long and seemed to really take it out of Michael. His affect feels negative although he says he’s having a good time. He sleeps a lot which has always been true, and most especially since his chemo. But I worry that it may be a sign of his disease returning and it puts a damper on my spirits.

 

June 26th, 2014

Today started out better. We got up for breakfast, swam, read and sunned. In the afternoon we took a two hour hummer beach ride to see the wild horses of Corolla. We came back sticky and covered in sand. We had a conversation which devolved into an argument because it was clear that Michael is doing this trip for me rather than us. I feel like this was ill-conceivedit’s hard for me to enjoy myself if he isn’t as happy as me. He suggested that we do some sightseeing which made me feel better than I thought I could, but still, this is not the same kind of trip as our St. Pete’s Beach idyll. A disappointment. Id hoped for one more perfect interlude before facing the next scan in August. I wish I had more clarity about what he’s thinking…he still can be so damn quiet. 

July 3rd, 2014

So we are home. The last few days of the trip were very fine with wonderful weather and much lazing by the pool and the beach. We ate at every restaurant on our list and even got the famous homemade Duck doughnuts which are fresh every morning and topped with the treats of your choice as you watch them being completed. Driving home was quite the long trip but so beautiful. The weather was perfect and the Blue Ridge, Alleghenies and Appalachians were glorious and majestic, dazzlingly green and lush. For awhile you can forget climate change and deforestation. Even cancer.

We came home tired and a little disoriented. We celebrated the 4th of July with friends. We tried to establish a daily groove, but the next scan was looming large and was hard to ignore. Michael became dark and somewhat flat. We worked in our garden, went to movies and exercised.

 

 

Then, for the second time in as many months, we were faced with another death. Our longtime neighbor had been struggling with a lethal leukemia for six years. He’d survived two bone marrow transplants and was constantly threatened by GVHD, graft versus host disease, a rejection of donor marrow. On July 9th, we were outside in our driveway when our friend’s son came racing out his front door, shouting that his father was on the floor, unconscious and covered with blood. The wife and mom in their crew was abroad at a family wedding, having felt secure that our friend was in stable condition, certain that he’d be fine in her absence. He failed suddenly and declined in less than 24 hours. Michael, my daughter and I were at his bedside, alongside his sons when he died. I felt that I was at a dress rehearsal. Absent his wife, I made arrangements with a funeral home and helped prepare for the bereft widow’s return. The following two weeks were consumed by helping assemble the funeral arrangements. That gathering took place on a blistering hot rainy day at the end of July. In the midst of the furor, Michael, in a burst of gallows humor, decided to make a cremation mix CD for his own end of life. I was a bit taken aback but thought better of it as I recognized that in our own ways, we were trying cope with what seemed inevitable, especially in light of the two cancer deaths that were so close to us.

August arrived with a bang, a literal one. As we were rolling through an intersection, a young student in a large SUV ran a stop sign and barreled into the side of my car. No one was hurt but starting the month with a crash felt like a bad sign. After all, the scan had happened only the day before. The accident felt like a bad omen. The days until the scan result appointment dragged, as did the long time we ultimately had to spend in the waiting room. When we finally saw the doctor he told us that three spots were lit up and active on the scan, one on each hipbone and one on the spine. He wasn’t sure of what the next step should be and amazingly, encouraged me to push on with my research and seek more opinions while he would continue to monitor Michael with scans. I wrote the most famous doctor in the country who was focused on Merkel Cell cancer and was amazed to receive a quick, personal response. 

RE: Michael P. – Metastatic Merkel Cell patient – relapse post-chemotherapy.

Dear Renee,

I will discuss this with Dr. Erica Shantha, a research fellow working with me, & we’ll try to get back with you with sone thoughts.

Paul

I immediately began sending more inquiries to doctors across the country to track down treatment options. Some of the physicians and I were now on a first name basis. I felt surreal much of the time, as if I was operating way beyond my pay grade but I did it anyway.

August 17th, 2014 Ever since the scan results, I’ve been racing full-bore against time, trying to find a place for Michael to be. A place that will offer some hope for more time. I have researched and researched until my eyes feel like they’re falling out of my head. After calling and emailing and reading and thinking, we finally have an appointment at the University of Chicago with an advanced cancer specialist named Dr. Salgia. I know nothing of his work other than that he has a good education pedigree. I don’t know if he has any tools in his arsenal that are different from anyone else’s. He is not on the list of Merkel Cell folks who think Michael’s best chance is a trial with a PD L-1 inhibitor that is yet unnamed. And that trial is far from home. As I look at Michael next to me, now strong and robust, it is impossible to understand that this poison is taking over his body. I practice thinking of his absence but it is too hard. Our journey forward is unimaginable. He has told me beautiful things these last weeks. Last Friday we went on a staycation at a hotel where we napped and lay close together. That night, at a wonderful dinner, he gave me a pendant he’d designed months ago with a local jeweler. It is engraved in his own handwriting, my life, my love, my heart. Gut wrenching but beautiful and a treasure to hold forever.

 

 

 

A few days later, our garage is broken into and Michael’s beloved and long sought-after bike is stolen. He feels broken, defeated. But we decide to replace it and damn the expense. He finds an identical one in Iowa and will drive there on the weekend to pick it up. But first, we drive to the University of Chicago, looking for a new plan.

Spider, Joy and Roger

My satin Roger pillowcase
My autographed Roger photo

Today, August 15th, 2022, Roger Federer announced his retirement. He’ll play his last professional matches at the Laver Cup in London on September 24th and September 25th. Then he will leave his career and move on. I’ve known this was coming. After all, he’s 41 and has bern struggling with knee injuries the past couple of years. Back in August, 2018, I wrote this blog. I was in the midst of seeing him play for the first time in real life in Cincinnati, Ohio. In September of that year, while in Chicago for my 50th high school reunion, I saw him again, at the United Center, playing in the Laver Cup. Lucky, lucky me. Michael, a great gift giver, gave me the satin Roger pillowcase, which made me laugh. But now I have it ensconced on my bed. He also gave me the signed photograph, along with my first Federer cap. Who wouldn’t adore a partner like that who indulged your fanhood without teasing? When I re-read this post, Roger was still swinging away. But now he’s reached the end of his incredible career and will go on with his family, his charitable works, his businesses and of course with tennis as perhaps its greatest ambassador. I shed some tears this morning. But I’m glad for everything he has no clue he gave to me.

D9279920-C8D1-4CF0-AFF0-F7BCF72C6095The other day I watched a spider crawling up the shower wall. The walls are solid marble or fake marble, but nonetheless, slick when wet. The little thing would make a little progress, slide back down and then start over at a new spot. The same behavior over and over. It was still struggling away when I got out of there and moved on to the next part of my day. But the image of its efforts remained in my mind. An epiphany popped up. I realized that I’ve essentially been doing the same thing as the little spider since Michael died. Making some progress in trying not to drown in grief, slipping back down the wall, and then trying another spot that might be less slick. 

While pondering this little metaphor, I realized that long ago I’d unwittingly set myself up to have a particularly terrible time with grief. As a teenager, I somehow got myself into the mindset that the really good times were the ordinary moments that a person experiences in everyday life. I saw lots of momentous events come and go. Many of them were overrated and disappointing. There was so much pressure in trying to create a perfect event. In my life I saw people fighting over lackluster parties, weddings and funerals. Nothing ever turned out according to plan. I remember the graduations which were so fraught with expectations that fizzled as the graduates had anxiety attacks and family members jockeyed for a place of importance in the success of the graduate.

2A0D1F9E-20B4-4903-A3D1-20DEF738EE67On my eighth grade graduation day, my baby cousin died and my parents couldn’t even attend to see me march in my sister’s prom dress, with my honor roll pin in the middle of my dangling blue and white ribbons. I’d barely turned thirteen. But I was thinking away, trying to figure out how to squeeze a little joy out of every day, rather than counting on the big life events for happiness, for joy. I was going to demystify the big deals and go for the small ones.

I became skilled at finding the nuggets of good, some tiny, others larger. How about a cloud? A flower? A painting? Perhaps a bird or a beautiful insect. Putting my feet in waves at the beach. Eating when I was insanely hungry. A song. An unforgettable line from a book. A scene from a movie. An embrace. A dizzying kiss. A loving pat on the ass. This was the stuff of true joy. Not all those things I was taught to wish for, to dream of, to set as my goals. My joy was inexpensive and easily accessible. Sometimes a few seconds were enough. An hour was stupendous. I developed my theory about coping skills. I knew that life was constantly challenging, that everyone had to cope with unexpected or unanticipated problems. So what was logical to me was that the people with the best lives were the ones who’d developed the best coping skills. I would be one of them. And the little daily joys were paramount in helping me cope. I spread the word to my family and anyone else who would listen. The itinerant lecturer, as my beloved son wryly tagged me.

And the truth is, I was right. That skill set served me well the bulk of my life. I could adapt fast and twist a negative to a positive just by glancing around my environment. I made a great first responder to all bad news. The queen of silver linings.

During Michael’s five years of the cancer rollercoaster, we squeezed what we knew would be our limited retirement into every moment of good health. We traveled as much as we could and saw grand geological vistas and beautiful oceans. We saw wild horses running on the beach and dolphins leaping into the air. We ate delicious food. We savored holding hands in the movie theaters while we shared popcorn.

We listened to live music and ate funnel cakes at funky festivals. We went to museums and saw powerful art. We worked in our gardens and read books next to each other. And we lay in each other’s arms every night. All the coping skills which made the tough stuff of life more manageable. We did the best we could.

Since he’s been gone, I’ve felt flattened out. I’ve done some fun things. I’ve spent time with my loving children and grandchildren. I’ve had my close friends get closer and be present for me. I’ve traveled and appreciated natural beauty. I’ve taken classes and gone to concerts. I’m out there in our garden which still looks so beautiful. But I haven’t felt joy. All those small things I found to create havens on the darkest of days added up to what joy felt like to me. I stopped looking for the big events long ago. Putting my feelings into such weighty and tenuous events was the opposite of joy to me. And I’ve missed the feeling. Michael’s constant presence was the underpinning to my zest for life. I didn’t really understand that. I knew we had what we called big love. From our very beginning to his end, we were enveloped in each other and nothing, not the worst of times or disagreements,  ever touched the powerful intensity of what held us together. I still ponder that bond every day. I even stole the title of a book about Claude Monet I read recently,  which accurately described how we felt for each other – the mad enchantment. That comes close to the description of us. But that lives in a private space in me. I can go there when I want to and I can feel us. But what about now?

I have many passions and interests. I like spectacles. I love the Olympics. I love the Triple Crown even though I worry about the horses. I love awards shows.

I also love Roger Federer, the GOAT, the greatest of all time.

EB2162F2-50D9-4760-B96D-01ECD4D2A467I’ve watched Federer play tennis since he was a boy, mostly because I’ve been watching tennis for a long time. There are few sports I don’t like. Over the years I’ve had so many people tell me they think it’s odd that I’m so interested in all the competition and negative energy that’s so often present in the sports world. I get it. I see it. But I love sports anyway. I got started by loving to play sports myself, even though I was embarrassed and humiliated by some of my skills. When I was a kid, I was teased about my ability to hit a softball and toss a football. The boys called me “moose.” The Chicago White Sox had a lefthanded player named Moose Skowron – hence the terrible moniker. In eight grade, a lot of kids wrote to me as moose in my autograph book. When I showed it to my son,  he cried at the meanness of people as he imagined me as a young pained girl.

But I stayed interested. I sat with my father when he watched sports on television and I learned a lot about all of them. And I went further and found favorites of my own. I was so happy that my kids were both great athletes and spent happy hours watching them excel.

But Federer. As he evolved and matured, I marveled at his athletic grace and beauty. So light on his feet and so natural. He worked on himself and erased his early bad boy behavior and became a calm, contained presence on the court. A welcome relief from some of the “enfants terribles” who are so prevalent among the many players. Best of all, he grew a social conscience. With the millions he earned he started a foundation which is dedicated to educating impoverished children. This year alone he’s started over 80 schools in Zambia. If you look him up online, you can see pictures of him sitting in the dirt with children crawling all over him. He plays with them and stands in front of chalkboards teaching them. Federer.

My family and friends tease me mercilessly about my devotion to this famous stranger who exemplifies so many good qualities to me. They call him my boyfriend. I know who my boyfriend was and still is – my Michael. But…

2B0A553A-40F0-4E26-BE58-1384274B42F4During Michael’s last months in 2017, Federer was returning from a six month layoff because he’d had knee surgery. In January, 2017,  he was returning to competition in the Australian Open. He is considered old for tennis now. He was 36 then. Michael had gotten clean scans from the doctors but I knew he was sick. After 45 years of living together, I knew him well enough to recognize a problem. But I couldn’t prove it. We were arguing. At odds. During the Australian Open, I sat up late through the nights to soothe myself by watching Roger play. And miraculously he won. My happiness carried me through the beginning of Michael’s end which began at the end of that month.

Michael died in May, 2017. Suddenly I was alone in our home. But coming up in July, there was Wimbledon. Federer pulled off another miracle and won that tournament too. His success helped bookend the hardest months of my life. 228837D3-9907-4E61-B628-E4A91F733211

This year, I was casting around for something to anticipate, some pleasure to distract me from my absence of joy. On a whim, I thought, what if once in my life I could see Roger Federer in person? What would that feel like? I decided to buy tickets for the Western Southern Open, a run-up tournament to the U.S. Open that Roger had won several times. He’d skipped it last year but I figured, what the hell? If not now, when? A four hour drive from home? You bet.

I anxiously waited to see if he would decide to play the tournament. He’s picking and choosing, now 37 and not likely to take as many chances with his body as he did years before. It could be this one or Toronto. He chose this one, in Cincinnati, Ohio.

I arrived here on Saturday night and Sunday went to the tennis venue to watch a few early round matches, but also to see Roger practice. I’d been told that the practices were almost more fun than the matches. I carefully found his practice court and planned my strategy of arriving early enough to be close to the fence which keeps the public at bay. With knees due for replacement, I needed a strategic plan.

I arrived at the site to get near the front and experienced the hot, sweaty crush of his many fans, jostling for a good view. I spent over 2 hours on legs that felt like lead. But I was determined that this was my one shot and that mind over matter is a thing. I kept my eyes on the entry gate. And it suddenly swung open and he appeared.

Is there such a thing as levitation? That’s how I felt. There he was, in my real life, breathing the same air as me. And then I had the pleasure of watching him swing his racket and float on the court which is what he does. I have photos and videos to prove it. I was there. And I felt joy.

I still feel it. Tomorrow I’ll get to see him play a match right in front of me. I’ll keep that with me the rest of my life.

And more importantly, I’ve learned from a little spider and a famous tennis player that I can modify my skills for life as its demands require me to do, in order to experience more of that joyful feeling I thought was gone forever. Different joy. But joy nonetheless. I don’t know what comes next. But a little more hope has inched through my internal seal, through the door I thought might be closed forever.EDCE89ED-151D-4182-9241-C6F7A5C72204The Colors of Joy – Arran Skyscrapers – Penny Gordon-Chumbley

Webs, Threads and Other Mysteries

Orb-weaving spider in its web

Toward the end of every summer, the orb- weaver spiders appear around my house, rapidly creating fantastic invisible webs which only become clear in bright sunshine or moonlight. Most often as you walk down the steps or between shrubs, you suddenly feel a thread, surprisingly thick, that splats you in the face or tangles on your arm, harder to break than one would imagine given the smallness of its creator. When it rains, or on occasion during an early snow, massive webs, previously unnoticed, appear and glitter in their incredible complexity. Years ago, one web completely covered the bed of Michael’s big red pick-up truck, prey stranded in disparate sections, as if stored in a pantry as the next meal. Sometimes you’re lucky enough to catch a weaver in the act of building, an opportunity to observe up close, an engineer of amazing talent. Of late I’ve been thinking of the unseen webs, along with those being explored by scientists below the surface of the earth, their size and complexity quite marvelous and thought-provoking.

The largest living organism on earth

For example, we have what is commonly called the “humongous fungus.”

“The humongous fungus is a single fungal organism found in Malheur National Forest in Oregon, and it belongs to a species called Armillaria ostoyae. These fungi can get pretty big, but the humongous fungus in Oregon is an individual that covers an area of three and a half square miles or 9 square kilometers. At that kind of size, you’d imagine that the humongous fungus would be easy to spot. You’d be wrong. That’s because it’s almost completely underground for most of the year. It only pops up when it comes time to reproduce.” From Discovery.com

Photo by Creative Commons

Then there is the fascinating microbial world connecting trees below the ground, an interactive world being studied by scientists.

“Trees, from the mighty redwoods to slender dogwoods, would be nothing without their microbial sidekicks. Millions of species of fungi and bacteria swap nutrients between soil and the roots of trees, forming a vast, interconnected web of organisms throughout the woods. Now, for the first time, scientists have mapped this “wood wide web” on a global scale, using a database of more than 28,000 tree species living in more than 70 countries.From Science Journal.

Image – Arizona State University

When I read about these natural phenomena, I can’t help but think that these patterns of mutual lifelong beneficial relationships are not confined to what’s happening in the ground beneath our feet. The human organism, still full of mysteries, has been shown to be significantly more complex than one would suspect from a cursory physical examination of the body. For example, we now know that DNA and cell exchange occurs between mothers and their fetuses.

“Fetal DNA can enter a mother’s brain and remain there for decades, according to autopsies of female brains. During a pregnancy, cells from mother and fetus can cross the placenta and survive for decades in the skin, liver and spleen – a phenomenon called fetal microchimerism.”- New Scientist.

Gut -brain axis. Image – Live Science

Additionally the science about the connections between the health of the gut and the brain has deepened our understanding of the delicate physiological balance necessary to maintain good health. Top that with the remarkable ability of our bodies to take on the biological characteristics of our partners and you have a complex series of webs functioning below the surface of us humans. “Insights into the gut-brain crosstalk have revealed a complex communication system that not only ensures the proper maintenance of gastrointestinal homeostasis, but is likely to have multiple effects on affect, motivation, and higher cognitive functions. The complexity of these interactions is enclosed in the denomination of “gut-brain axis.” (GBA) National Institute of Health.

X-rays of human couples – Photo by Vuing.com

Couples influence each other’s mental and physical health. Recent studies have demonstrated notable spousal concordance in gene expression patterns, cellular immune profiles, and inflammation. Furthermore, couples’ intestinal microbial communities – or gut microbiotas – and health behaviors are also more similar to each other than those of unrelated partners, providing common pathways for shared disease risks. From Psychosomatic Medicine Journal.

So what about all this stuff? How did I go down this rabbit hole of connections and continuities in nature? Although I’m often fascinated by these topics, I think I really started thinking hard about them last week when I was stunned with the news that one of my old friends, Pat, someone I’d known for over 50 years, had died quite suddenly. In my life, I’ve been fortunate to maintain contact with people I’ve known since I was a small child. Some people eventually fell away, but others remain connected to me no matter how much time or distance is between us. Along the way, I met more people, especially in college in the 60’s and 70’s, people with whom I shared a profound sense of community built around our shared political beliefs, and a vision for a future based on a set of principles out of step with the class, racial and sexual stereotypes of the past. In that heady time, we built families, outside the biological ones from which we came. Not everyone with whom I shared that part of my life stayed in my daily world as years passed, but a surprising number did. With tremendous good fortune, we maintained contact, ultimately aided by the advent of technology, but even before that game changer, with a concerted effort to incorporate our ideals into at least part of our adult futures. My friend who died was part of that family. Although we didn’t have the same continuous contact that we did in our youth, we were always in touch and could easily pick up our communication no matter how much time had passed. For years we all vacationed together with our kids, our parents and each other, whether in pairs or single.

Photo from our extended family vacations – 1995
1995
1995
1995

Pat’s death was shocking as all unexpected deaths feel to survivors. Within a few days, the old network of our community, held together like a clutch of sturdy threads regardless of time and space, emerged from the past decades. I found myself talking with people I haven’t seen in years. An email network for sharing interesting articles transitioned into communication about the realities facing everyone as we coped with this death. I was out of town, but still we engaged with each other. I wrote a blog. I wound up writing her obituary. Through this last week, I’ve continued to think about this web of people. For me, these thoughts are part of a continuum about the powerful connection I still feel with Michael, now gone for over five years. I’ve gotten used to the idea that feeling his presence near me is a real thing, when at no point in my life, did I ever think that there were possibilities of links between the living and the dead. I’ve never been religious, although I have my own version of a spiritual life. I feel my parents’ presence frequently and I suspect there are more surprises ahead of me in this unknown realm of possibility. I’m intimate enough with my kids that I can feel them without conversation and I have that odd awareness with other people too. I choose to believe that some day, after I’m long gone, these otherworldly sensations will be made explicable by scientific explorers with technology beyond anything I can currently imagine. Why not? As doctors applied leeches to people ages ago, hoping to release the sources of their illnesses, could they have conceived of MRI equipment that could see the body’s tissues in remarkable detail? Unlikely.

9/11/01 – Image – New York Times

In addition to Pat’s death, the 21st anniversary of 9/11 loomed. Like most people, I have indelible images of that day in my mind, along with the other historical moments that sear themselves into our brains. An old friend of mine who became a journalist, and who married a journalist, were covering that story for the Wall Street Journal. Her husband walked into the billowing debris to get first-hand information about that disaster. His lungs were severely damaged and he was hospitalized for a long time. Eventually he was well enough to go home but the rest of his life was a challenge for breath. He died in August of 2020 at age 67, the same age as my husband at his death. His widow, my old friend, was traveling in Europe last week, which I knew from social media. She saw the news of Pat’s death from afar and wrote me to ask what happened. She wanted to contact another mutual friend with whom she was close. I was amazed to hear from her and yet, not. Way back in 1972, when she was studying journalism, she took several black and white photos of Michael and me, as part of an assignment. I treasure those photos which are an incredible gift of a place in time, when camera phones didn’t exist and so many moments were never recorded. Below are a few of those photos, now 50 years old. I’ve always remembered her for that photo shoot.

Michael and me – 1972
Me – 1972

The 9/11 weekend was mixed with moments of fun and happiness, a baby shower for my son and daughter-in-law, who are expecting a baby daughter in early November. She will be my third grandchild, and the first girl in her generation. In addition to local friends and family, my cousin and her family came here from Ohio for the first time in almost three years. After the shower, all the family had dinner and precious time together. The next morning, 9/11, we went out to breakfast before everyone went their separate ways. We discussed the event and shared our different experiences of that time. The rest of my day was quiet.

The first thing I see every morning

Monday morning, I woke up and checked my phone for mail or messages. I was surprised to find one from my traveling friend who was in Italy. She was with her daughter, as part of the trip’s purpose was to strew some of her husband’s ashes in Turin. He was of Italian descent and together, they’d had wonderful trips to his ancestral home. She was writing to tell me of a series of experiences she termed “otherworldly,” coincidences that so powerfully evoked her husband that she felt like she was losing her mind as they just kept coming. She’s read enough of my social media posts and blogs to know that much to my amazement, my relationship with Michael continues beyond his corporeal absence. I think she felt that I’d accept what she was feeling with no judgment, which is correct. Although I have no concrete evidence of the invisible strands that have both astonished me while they provide intense sustenance, I now believe in them. As I poke through the science I mentioned earlier, I hope that someone will figure this out one day. I’ve grown comfortable with being somewhat off the usual beaten paths and totally understand the need to be believed and validated. I was happy to oblige her. I know that for me there’ve been times when some people treat me like an alien because I’m so comfortable in this odd cosmic universe. It’s been quite a week. I expect I’ll be exploring and thinking away about all these mysterious ideas until my brain stops working. Meanwhile, I’ll leave a photo of trees that clearly are expressing respect for each other’s individuality while sharing resources and community. Why not us?

Photo – Natural History Museum

Be 278 – A Cancer Journey -Chemo World

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This rather non-descript lobby hides the portals into the radiation and infusion centers which are now part of our calendars, part of the new routine of our lives as we move through the phases of cancer treatment. Michael has already been through thirty rounds of radiation to his head and neck in the effort to contain what appeared to be a highly treatable Stage IIIA Merkel Cell carcinoma (MCC.) But the radiation only provided a delay for the insidious cancer cells which eluded his only post-treatment PET/CT scan a few months after completing his protocol. We learned that those scans only detect tumors larger than a centimeter. So any teeny monsters can just hang around, plotting their next moves.  In the ensuing year following that one lonely scan in November 2012, while being examined every three months in the general area where his first lesion had shown up, the MCC chose not to be predictable, to follow its typical trajectory of metastasis. No new skin tumors. Instead it moved surreptitiously through either his lymphatic system or his blood, which one we could never know, and deposited itself on his bones, seen commonly in only 10% of MCC cases.

Merkel cell carcinoma is a very rare disease in which malignant (cancer) cells form in the skin.

At the time, given that there were only about 1500 cases diagnosed annually in the U.S., the bone presentation was impossible to wrap our minds around. And it crept in without causing any symptoms. No pain anywhere. If we hadn’t begged for another scan, I’m not sure if the two-three month prognosis we received in November of 2013 wouldn’t have been even worse.

The radiation suite was on the first floor of the cancer center on the east side of the building. After the 30 targeted treatments to his head and neck, Michael had the classic loss of taste and appetite and burning of the skin which was expected during this type of exposure. Eventually his thyroid gland succumbed to the rays and he required a supplement to compensate for that alteration in his body. Then he appeared to return to normalcy. An illusion.

For

We were done with the surgeon and done with the radiation oncologist, at least for the moment. We were now in the medical oncology department. Chemo world. The chemo infusion suite was on the clinic’s second floor, where the doctors’ offices were, along with a number of “procedure” rooms. That title sounded deliberately ambiguous and scary. Before any chemo was administered, a blood test was done in advance to make sure there were enough red blood cells, white blood cells and platelets available before the hammer of treatment dropped and did its indiscriminate destruction of anything in its path. A meeting with the oncologist to analyze that bloodwork, and to address any other concerns was the first order of business on day 1 in chemo world. During that visit, we’d ask our questions and be given instructions about what to expect when, along with prescriptions for adjuvant therapies to help stave off some of the worst side effects of whichever particular cocktail was on the menu. And so began the meds for the anticipated nausea and the steroids to help reduce inflammation and increase appetite. Because of the strength of the chemo cocktail, an order for a Neulasta injection was ordered and would be given the day after a chemo round ended. That drug was intended to stimulate blood cell development in the bone marrow after the devastating effects of the treatment. We were told that there would be six rounds of this cocktail, administered for three straight days, every three weeks. After the first three treatments, another scan would be done to see if there was any response to the drugs. If there was, the next three rounds would be given; if there wasn’t a response, chemo would cease.

These were the facts we were trying to absorb. Suddenly we were living back on the edge, an edge we thought we’d pulled away from for over a year. I went back to read my journals to see my exact thoughts from that time:

December 2nd, 2013

Today, I feel deep despair. Tomorrow is the first day of Michael’s chemo. The idea of watching him be poisoned is shrouding me in blackness. Knowing how he will detest this process and how the degradation of his body will hurt him is unbearable. A part of me feels that he should try this, although I rapidly squash the tiny rays of hope that come uninvited. It is mostly that he seems too young and vital to just surrender himself to this evil cancer; there is no other course but to allow this toxic shit to make its efforts. But standing by and watching him suffer is too hard for me. I know this will change and that there will be things for me to do when he needs me. Yet, I feel my toes curling on the edge of a steep and jagged cliff, looking down, down into the type of abyss that has frightened me my whole life. Always clinging to the ground and trying to stay stable, that’s me. But I’m being dragged along here and I can’t run from it. What is left in my tank? I feel empty.

Michael’s first day of chemo arrives. We meet with the doctor who checks his vitals and labs before he orders the carboplatin and etoposide cocktail. The clinic pharmacist mixes the drug doses based on Michael’s weight. We head into the infusion suite where you can receive treatment in a large open room with other patients, or in a small private room. We always ask for privacy and are lucky enough to get one every time. The treatment begins with a nurse setting up an IV because Michael has opted out of getting a port which would allow the meds to be administered through the same place every time. I think the idea of having to see this sealed hole every day is more than he can bear. He wants to be able to forget what’s happening for short periods of time and he couldn’t do that with the port in his upper chest. I think the port would be easier but it’s his body, not mine. And our different approaches to life will be apparent as we navigate this experience, as we’ve navigated our whole life together. We’ll figure it out. The nurses are warm and comforting. One in particular is the go-to person if inserting the IV into an uncooperative vein is particularly tough. The treatment is a three day process. We go in around 10 am and start with an anti-nausea drip. Then the IV has a flush and we wait for the bags of chemo fluids to come up from the pharmacy. They are calibrated to drip in at a particular rate. The ticks of the machine counting and clicking becomes a soundtrack for treatment. The days can be very long. Meds can be delivered late. Nurses get tied up with other patients. Sometimes we’re there for seven hours. But we come prepared.

Michael and I have been too busy in our daily lives to watch many of the highly rated television series that we’d heard about so we decide to catch up while spending three straight days in the cancer center. He brings his laptop with him and we start plowing our way through the shows we’ve missed. When the sweet nurses come in to change his med bags they ask us what we’re watching. Things are a bit awkward if they appear at a moment when Dexter is plunging a knife into someone’s chest but, macabre as that may seem, it’s a distraction from thinking about MCC. We try watching Breaking Bad, but after a few episodes, Michael nixes that series as the main character has lung cancer. Too close to home.

There are three weeks between treatments. After round one, we are coming up on the winter holidays. For many years at this time, we’ve traveled to Starved Rock, a beautiful state park with hiking trails, bald eagles, and a lovely lodge with a big indoor swimming pool and hot tub. We’ve traveled there with both of our kids and over time, with their friends and sometimes with only ourselves. We decide to go, not knowing if this will be our last time to share that place of memories. Michael’s hair is already gone and his platelets are marginal but we trundle off with our daughter, son-in-law and grandson. The little guy has a cold and being in the vehicle feels like we’re in a germ factory but we’re living one day at a time.

The first night goes well, but it becomes clear that our grandson is feeling worse. While Michael is trying to push the thoughts of his illness below the surface, I am becoming increasingly hyper-vigilant and paranoid about random germs and the possibility of infection. At dinner, he orders a steak that is so rare it may as well have hooves and I begin rattling off the dangers of eating any meat that’s not well-done. Michael gets so angry that he gets up from the table and stalks away. This conflict will be revisited many times as I aggressively try to protect him from opportunistic infections, while he feels I’m too pushy and overbearing. Trying to find the balance that fits both our needs during this impossibly stressful situation is tough. I try reminding myself that in difficult situations, people tend to become more like themselves than ever. No one is changing personalities so life becomes a television show with a nifty ending. The powerful intimacy between Michael and me is strong but so are our very different approaches to problems. Chemo world highlights those and we have to struggle through our unwanted conflicts to remain a tight unit. No one can prepare you for these developments – you negotiate them as they arise and try to hurry as the clock always feels like it’s running down with no time to waste on stuff like steaks.

Round 2 of chemo takes place over Christmas. The cancer center is closed so we are sent to the cancer floor in the hospital for infusions. Being there is oppressive and deeply sobering. The inpatients are very ill and feel like our future instead of our now and we both want to get out of there as fast as possible. Michael finally gets a cold and I worry incessantly. But despite the respiratory issue and a lot of fatigue, his steroid, prednisone is having a positive effect on his appetite so he has no weight loss and happily, no nausea. But there is no way to know whether the treatment is being useful or not and the pressure is hard to take. Michael gets quiet and I try to allow him that. He is facing death and I am not. I turn to my journal.

January 14th, 2014

From 9 am to 2 pm, I was sitting next to Michael while he was being pumped full of carboplatin and etoposide. Now I am having a pedicure. I’m trying to be mindful of the fact that I’m alive and that my body is full up with stress. This week is insane. Three days of chemo through Thursday. The next two nights, our grandson will stay with us because our daughter is having her baby on Friday. I don’t know who to worry about first. I run around with Purell and Lysol wipes and sprays, making everyone wash their hands and stop blowing their noses into tissues that are randomly discarded. There’s so little I can control. Today the doctor showed us Michael’s diagnostic PET scan. It looked like someone had dipped a paintbrush in black paint and flung it all over his bones. We’ll know nothing until the scan after this, round three of treatment.

On January 17th, 2014, our new grandson was born. After November’s dreadful diagnosis, we weren’t sure Michael would be here to meet him. The round of chemo earlier in the week hit him like an avalanche. I’d dropped our oldest grandson at daycare that morning and went by myself to the hospital to be the first to meet the new baby besides his parents. So different from welcoming our first grandchild together. Michael eventually came to get his Neulasta shot and see the little one but his mood was dark and his fatigue profound. I knew he was thinking about not being around to watch this baby grow up. He went home and returned for awhile later, pulling himself together to hold the baby. The kids gave this new little boy “Michael” as his middle name. As my daughter’s last name is hyphenated, Michael will be around for decades to come, long after the original is gone. 

On January 29th, Michael has the PET/CT scan which will show whether his nine chemo treatments have had an effect on the widespread MCC bone lesions. These scans make us fraught with anxiety and in addition, are quite peculiar for Michael. Because he’s 6’4″ tall, he has to be scanned in two parts as his body is too long for the equipment. He is exhausted and his blood counts have taken a beating despite the Neulasta injections. We have to wait until February 4th to get the results, to find out whether he is done with chemo or whether there are nine more infusions to come. While going through this process, I have taken a deep dive into researching all the science I can find about Merkel cell and about potential clinical trials and other treatment options. I can’t just sit with only one possible alternative that stands between him being alive and death. I realize that our community oncologists are not scientists or researchers. I also learn that clinical trials generally require that all other treatment choices must be exhausted before a person is eligible. This is my new job, researcher, while Michael copes with the toxicity of his meds.

The scan results come in and the news is better than we expected. Some of the cancer has disappeared. Other spots in the spine and femur look worse but the oncologist says that the Neulasta shots cause a lot of bone marrow activity which produce confusing images, so he is recommending the next three rounds of chemo. He thinks that Michael may need transfusions to get him through, especially as we’ve learned that he’s apparently had a low platelet issue underlying everything else. But to me, this means 9 more weeks of life. The first infusion of round 4 happens that very day. From my journal: We are not a tragedy. I know that. Holocaust victims were a tragedy. Syrian children are tragedies as are Sudanese and millions of other ethnicities on whom horror and genocide are perpetrated every day. We are one unfortunate little drama. I know life is still filled with beauty. I know I’ll be interested, even when I’m lonely.

The fifth round of chemo is more punishing and wrests a deeper price from Michael. His fatigue is profound and he’s developed a reddish-black sore on the inside of his lower lip. A smaller response than other patients have, but nonetheless, difficult and hard to watch. This strong, endless partner of mine brought so low. I am unable to imagine his absence after 42 years together. I suspect I will feel like this until his decline is so staggering that I’ll finally understand that it’s best for him to leave me. The impossible. The cessation of dreaming. The absence of hope.

And then finally, it is March and the last three infusions are happening. We are old hands at this alternate reality now. We usually are in room 5 for the treatment. I know where to get the heated blankets, the water and the snacks. Michael’s veins held up and he only needed Deb, the magic nurse once, to start his IV. Somehow he’s avoided transfusions. We’ve gotten current on our tv shows and some movies as well. At last, this chemo world is ending. We’ll have to wait several weeks until the beginning of May, to let his body settle itself after the assault of the toxic treatment, and then he’ll be scanned to see what worked or didn’t work. The scan is the day after our wedding anniversary, perhaps our last. I’m still researching and we are also desperate to squeeze something in the way of retirement together into our lives. On April 2nd, 2014, we drive to Indianapolis and board a plane for Tampa, Florida, en route to a fancy resort/hotel right on the Gulf of Mexico at St. Pete’s Beach. When we arrive, I am renting a car and looking at Michael who is pale and wiped out. But we’ve done a good thing. The trip is restorative, for both of us.

April 8th, 2014

I was really scared on our travel day because Michael looked so pale and exhausted. But each day, he has improved, has real color in his face and has relaxed so much. We slept late and ate brunch and then sat and read or walked on the beach. Michael eats a hearty bowl of clam chowder every day at the restaurant on the beach – the clams are a high-heme food to help restore his blood count. We doze and stare at the beautiful Gulf. Then we amble somewhere for dinner and afterwards, we lie in our bed, have sex, watch television and hold each other. We have managed to shove away the disease for this brief period. When grief and terror creep in, I am using all I have to push them away. I know when we go home tomorrow, everything will rush back in and this bliss will eventually slip away. But its sweetness and ease make it one of the best trips we’ve ever had, as with our heightened sense of being alive, we totally soak in every moment. Maybe it’s our last trip. I have no idea. But I won’t ever forget it.

We head home and make our way through the next few weeks. On May 1st we have a melancholy anniversary dinner. Michael gives me three CD’s he put together for me called “Love Songs for The Lovely Renee.” I cry at the care he gives me in the midst of his confrontation with mortality. The next day he is scanned and we struggle through the weekend to his Monday morning appointment with the oncologist. The doctor tells us the scan is clean. We are off the hook until August. Chemo. Check. Moving forward. 

One Phone Call Away…Farewell, Pat

A rainbow showed up while I watered my garden this morning

Ordinarily I don’t write two blogs in a day. But today is an exception. As I’ve moved inti the latter part of my life, I’ve become increasingly aware of the fragility in which we all exist. My losses have been excellent teachers. I have a lot of personal experience at knowing that in one second, a phone call can come and suddenly your life is forever altered. Today was one of those days. I woke early this morning. I was finally going to use a couple of gift cards my daughter had given me many years ago, for the two of us to use at a swanky resort and spa in Wisconsin. The trouble was, we could never find the time to get away. The last time I’d been to this place was in November, 2008, when my family and my neighbor’s family plotted a getaway for me and the wife and mom in that family. Both she and I had been through grueling caregiving experiences with our husbands. They were both still alive. So were we, albeit exhausted and bedraggled. But I didn’t want to go on this surprise trip. Michael was scheduled for a CAT and PET scan on the day we were to leave, his first one in a year, following a big surgery and 30 radiation treatments to his head and neck. I wanted to be with him, even though I couldn’t be in the same room. I was incredibly nervous because I felt that he should’ve had more frequent scans since his last one. I left reluctantly, knowing I was prescient. His scan results were awful, marking the beginning of his end, which thankfully, was still a few years away. I’d been to this place with him, with my daughter when she was a college student and with my mom and sister. Recently I realized that time was getting away from me and with my daughter’s blessing, decided to use the gift cards for a brief luxury treat for my sister and me.

Before we hit the road, I wanted to water my garden, fill my bird feeders and suet feeders , and take care of my dog. Your basic, let’s-make-sure-everything’s-alive-when-you-get-home morning flurry.

I made my way through the garden, glad to see new hibiscus blooms, noting that there’d finally been enough rain to encourage fungi growth. Then I made my to the flower beds, telling everyone to hang in there until I returned.

I’d showered but with all the running around, I was sweaty and couldn’t wait to sit down in an air conditioned car to drive away. I managed to get a few shots of the beautiful day we had for travel.

We were cruising down the highway, listening to music and chatting, when my phone rang. I saw the name of my oldest, most intimate girlfriend who I’ve known for almost sixty years. We went through elementary and high school together and ultimately, became college roommates. We’ve never been out of each other’s lives, even vacationing with our families and many others who were college friends. We talk regularly so I wasn’t surprised to see it was her on the phone. I answered and we exchanged a few words when she suddenly said, “this is not a good news call.” I asked her what had happened and she told me that our friend Pat, who we’d known over 50 years, had died last night. She was found unresponsive in her home and was never revived. I was utterly stunned, as was my friend. Fifty years ago the three of us had headed off to Europe for an adventure together. She was part of the group who participated in those annual vacations. We’d been through a lot together. An educator in Chicago, she invited Michael up to teach some of her students. She came to his celebration of life. We didn’t talk all the time but we stayed in touch. I’d wondered why I hadn’t heard from her recently. And now she is gone. Once, the three of us and our friend Julie were quite a formidable foursome. Now there are only two of us left. This is what aging is like – anyone can vanish at any time. She wasn’t elderly, just 72, or close to 73. Below the national average. Bad news is one phone call away. When we hung up, I called my kids and my friend Brian. My trip was still happening. I am still alive.

So I am at this beautiful place. I swam. I took some photos. I thought of Pat and so many parts of our relationship. My job is to live and have a meaningful life. I am trying to do that.

I exchanged a few texts and emails with some old friends. I thought some more. At dinner, I had a margarita, rare for me as I’m not big on alcohol. I had dessert, too. I was toasting Pat with these gestures which for now is all I can do. Later I’ll learn if there’s anything else that would be significant. At this moment, I’m sharing my trip with my sister and being aware of life. Hanging by a thread, but too hard to always think of it that way.

Me
My sister

Pat, you worked so hard your whole life and were committed to improving the lives if others. With no kids of your own, you were all the kids’ favorite aunt. I wish you’d had a longer run. I hope you rest well. Farewell, old friend.

Be 278 – Chapter 4 – The Cancer Bomb

Michael and I stepped off into 2013 with our new regimen in place. We were concentrating on figuring out how to adapt to the knowledge that he was harboring a potentially deadly disease that could rear its head at any time. Simultaneously, we were trying to practice real mindfulness, squeezing our best possible days out of the present. After his radiation treatments, he was examined regularly for any signs of tumor tissue on his scan. I was grumbling at his doctors, dissatisfied that he had no future scans ordered, the way melanoma patients did. If Merkel cell was worse than that where were the scans? The doctors said it wasn’t in the protocols. I argued that there can’t be real protocols for an incurable disease. I decided to bring it up at every appointment. 

Some years earlier, I had gotten trained in the art of lymphedema massage, a technique used to relieve backed up lymphatic fluid which occurs when lymph nodes are removed and the fluid creates swelling. Michael’s swelling was in his face and neck. I’d had some practice doing this for my mom years earlier when she’d had many lymph nodes removed during her mastectomy. I felt glad to have a hands-on way to be helpful in relieving some of his discomfort. In early June, when school ended, Michael and I had our long-delayed trip to Sanibel Island, cancelled the year before. Then I surprised him with a birthday gift, a journey to Panama to have a “boys’ trip” with our son, who was working on his PhD there. A biologist studying the physiology of tropical birds, our son hadn’t ever had a private trip with his dad. We’d had plenty of family vacations, but all of us thought there was a long future stretched out ahead of Michael, with plenty of time for the two of them down the road. The previous year’s Merkel Cell cancer diagnosis and subsequent treatment changed all that. We were living in the now instead of the future. There was no more counting on limitless time. Michael the historian was eager to see the Panama Canal, in addition to observing what his kid was doing with his research. The night before Michael was supposed to leave, I developed lower back pain and bled when I urinated. I’d had a kidney stone once before which was quite painful, but this didn’t feel as bad as that one. We got scared because my father had died from bladder cancer which presented only as blood in his urine. Michael wanted to cancel his trip, but I said, no way. The previous year, our kid had learned of Michael’s disease while he was alone in the rainforest. If there was something severely wrong with me, I didn’t want him finding that out, alone again. Michael took off on Sunday. By Tuesday, I was relieved to learn that I, indeed, only had kidney stones, and was thrilled that Michael was traipsing around with our kid, having a lifetime experience for both of them.

When Michael came home, we proceeded with a normal summer. I deferred dealing with my massive kidney stones until after our grandson moved on from our house to day care. Michael seemed to be doing well at his regular exams and we edged cautiously forward, hoping against hope that his remission would stick around. Looking back on that past year and four months, it was hard to believe we’d gone through an orphan cancer diagnosis and treatment, moved my mother from our house to assisted living, had our son return from Panama with a scary dengue-fever like illness, while I walked around for months with kidney stones. In the meantime, our daughter was pregnant with a second child. After grandson one was safely ensconced in day care, the plan was for me to have my kidney stones removed, rest for a few months and then get ready to care for baby number two who was due in January. Michael would return to his classroom in the fall. His scan, the first since November, 2012, was scheduled for November 8th, 2013. Getting it was a miracle after months of wrangling with the doctors and their protocols. A new team member, younger and a radiation oncologist, had been studying me carefully during our team meetings. He said one should be done for peace of mind. Finally.  As our family was coping with these issues, our longterm neighbors across the street were also dealing with cancer. The husband in that family had been struggling with a lethal form of leukemia and had gone through a bone marrow transplant. His wife and I were sharing the stress and fear of losing our spouses and were both worn out. Our families got together and decided we really needed a break.

So in October, shortly after my kidney procedure, we were gifted with a long weekend at a cushy resort in Wisconsin where we’d be pampered from head to toe. I was surprised, grateful and very unhappy. The reservation began on Friday, November 8th, the day of Michael’s long-awaited scan. I really didn’t want to go. My deep concern over that long gap between PET/CAT scans was always hovering a few millimeters below my surface. Although I was practicing living in the present, my inherent instinct to look down the road was always operating covertly. Old habits are indeed hard to break. I tried arguing my way out of the trip. Michael really wanted me to get the break before Thanksgiving, always a big bash at our house and his favorite holiday. He made sense but I was very uncomfortable and nervous. He told me that being present for the scan wasn’t necessary, that I would be with him when he got the results. Everyone else was pushing for the trip, optimistic and really excited because they’d taken me off guard, always a tough thing to do because I usually sniffed out the best-laid plans for me. So, reluctantly, half-heartedly, I packed up and took off for my very unwanted vacation. I wanted to be with Michael but I made an effort to appreciate the luxury of having nothing to do but be the recipient of massages, pedicures and poolside service. I tried to submerge my worries and enjoy the moment.

When I returned, Michael told me that his post-scan appointment had been moved from November 11th to the 12th. All my nerves went jangly as I felt my radar detecting a problem. Michael seemed alright but I couldn’t wait to get to that late afternoon appointment at the end of his school day. We sat in the lobby of the head and neck oncology department for a bit and were soon called back to the office. Within minutes, our surgeon entered the room with the scans and it was instantly apparent that we were in trouble. Unable to shake the crestfallen look on his face, he shoved the films up on his light board which lit up with red flashes indicating widespread bony metastatic disease. The cancer bomb had detonated.

He said he’d looked at the scans three times in utter disbelief, unable to wrap his mind around the involvement of so many bones. He thought it must be a different cancer – of the 1500 cases of MCC diagnosed per year, only 10% of distant metastases were to bone. He’d already scheduled a bone biopsy for Michael with an interventional radiologist to confirm the diagnosis and we were being sent to oncology where the cancer doctor would assume the team lead from him, our surgeon and guide. His nurse slipped into the room and told us that he’d practically been in tears and was horribly disappointed that he hadn’t been able to stop the disease progression. We asked him for a prognosis. He said that absent treatment, Michael might have two to three months of life, with treatment perhaps a few more. He looked utterly defeated. When we left the office, I felt so sorry for him that I gave him a big hug. He said that was the first time a patient’s family member had taken the time to feel something for him. But I truly felt for him and his profound disappointment. 

We stumbled toward the elevators, numb. We called our kids and decided to head over to our daughter’s law office. Our son joined us there and the four of us lay entwined on her couch, sobbing in disbelief. An unforgettable moment in time. There was our girl with her pregnant belly, wondering if her father would live long enough to meet the new baby. Eventually we all went home. That night Michael and I clung to each other in our bed, alternately crying, talking, comforting each other, trying to grasp what would happen next. We slept fitfully and rose the next day to make plans. He needed to resign from school and prepare his students for that eruption in their lives.

I was already thinking of what I could do to help him face his mortality and give him succor in this dreadful time. He went through the bone biopsy which confirmed the MCC. Then we met with our oncologist, Dr. Luyun, who was now our primary team leader. We talked with him about the chemo regimen which would be rigorous – a cocktail of carboplatin and etoposide, given back-to-back, three days per week, every three weeks.

This was not a protocol designed for MCC, but rather one for other neuroendocrine cancers, most especially lung cancer. Chemotherapy was not considered to be truly effective for this disease, except in the short term for some lucky patients. The day after the last treatment in the cycle, Michael would be given a Neulasta injection to help support his immune system as his white blood cell production, along with red blood cells and platelets, would take a big hit from this toxic regimen. We asked him how long he might live with this plan. Luyun replied, “maybe a year.” We contacted Dr. Bichakjian in Ann Arbor to see if he felt the treatment was appropriate. He was disappointed for us but confirmed that this choice was our best bet for now. We touched on the topic of clinical trials but discovered that traditional treatments needed to be exhausted before going that route. We asked Dr. Luyun if we could take some time to let Michael make his exit from school and have a normal Thanksgiving. He said a few weeks wouldn’t make a difference.

So we proceeded to the tasks at hand. Michael offered his retirement to his principal who sadly accepted it. Then he had to tell his kids which was very hard for him and them as well. I immediately started a Facebook support group for him which the school graciously shared with the kids, their families and the building staff. The group’s numbers burgeoned so quickly that Facebook trolls started advertising on its page. After that, people needed approval to join. For Michael, who was not a big social media person, this group became an important lifeline to the people and the job he loved so much. In addition, I contacted the school district to help establish a scholarship in Michael’s name that would be awarded annually to a student who excelled in the study of history and government. These small, concrete actions made me feel like there was actually something I could do to help my partner as he stared at his mortality. I don’t think either of us could really believe the horrific prognosis. He had no pain. He did start losing a little weight after he heard the bad news but he still looked strong. Imagining death is such an ephemeral experience, even when there’s nothing critical going on with your health. I think conceiving of the world going on without you is just too hard. Michael wasn’t ready to leave his life. He said he’d be willing to try anything to stay alive. “I’m not done yet,” he’d say. “I still have so much to do.”

Our kids came to his classroom on his last day to help carry out his personal possessions. All day, administrators and other teachers sat through a period of his teaching, out of respect for his skills. Kids brought gifts, cards and notes. He gave away certain precious classroom items to his closest colleagues. As we packed and watched him gather up the symbols of his career, one lone student sat in the classroom, struggling away on the Constitution test, a senior with learning disabilities who worked very hard and needed this exam in order to graduate. Michael had given him study aids and steady encouragement as we all milled around him. When it was time to go, Michael sat down to grade the exam. When he got to the end, he looked up with a grin and said, “Congratulations! You passed.” The boy’s face crumpled with relief and joy and he threw himself into Michael’s arms, saying thank you and then, good luck with your sickness. I don’t know if he really passed or not. The beauty of the moment was enough.

We tried to squeeze in some normal life. We went to the movies and saw Twelve Years a Slave which was so somber we could barely speak afterwards. We took a quick trip to Chicago to go to the Field Museum to see some exhibits and to eat at two of our favorite restaurants, Greek Islands and the original Uno’s Pizza. We lay in bed for hours holding each other. My journal describes those moments – “I am enveloped in love and lonelier than I’ve ever been.”

Next came what we thought would be Michael’s last Thanksgiving. Our family came including cousins, second cousins and anyone else from far away who feared they’d never see Michael again. From my journal – “As I prepared the food I felt overwhelmed, disconnected, detached. The food turned out delicious, maybe some of the best I’ve ever made. I only cried twice. I guess it was the right thing to do.” Treatment would begin the following week. We were as ready as we could be.

Labor Day

Tick-tock…

Back when I was a kid, Labor Day meant a couple of things. The last holiday before school began. The day we remembered that working people were often treated as if they were less than human. In my home, we grew up believing in unions which fought for better working conditions, fair wages, reasonable hours, health care, days off and for the protection of children. I knew that there were some unions that were crooked and fraudulent, but they were the minority. In my family, we celebrated Labor Day, May Day and workers’ rights. Michael and I were married on May Day, feeling a bit like frauds ourselves as we watched the May Day Parade taking place on the street below the hotel where we wed. We felt like we should run downstairs and march awhile before we did our thing. Some years later, I remember how Ronald Reagan made it his business to break the back of the air traffic controllers’ union, a great irony as he was once the president of the Screen Actors Guild union. Twice. In this country, while a significant number of businesses give their employees a day off on Labor Day, about 40% of them remain open for special sales. I’m pretty sure they don’t earn extra pay.

For many years, the local Labor Day parade came straight down our block at 10 a.m. The labor unions, political parties and their candidates, the Shriners on their little bicycles, plus all manner of fire trucks and high school marching bands, strode through the typically steamy weather. Loyal friends and family members trotted along to provide water, while any number of decked-out bicycles with their funny riders, and decorated collector cars with smiling mayors aboard waved. Huge semis and cherry-pickers provided not only loud blares from their horns, but piles of candy tossed at the kids lining the streets. The candy parade. My grandsons always shared their banana Laffy Taffy with me. Pens and rulers with campaign slogans and union logos, fans and American flags were given to any takers along the route. The parade ended with a picnic at a local park. Every year, all the people on our street put chairs at the curbs in front of our houses, joined by folks from the community to share in this great tradition. But this year, whoever organized this parade changed the location. I have no idea where it took place. I only know that I was bitterly disappointed to miss this great annual community event, right in my own front yard.

Mom
Mom and me
Mom and me

This Labor Day happened to be my mom’s birthday, what would have been her 99th. She died in 2015, just shy of her 92nd. During her last few years, she’d lost some mental ground, her fabulous memory fading, to her chagrin and that of the rest of her family. With time to reflect on what the passage of time wrests from everyone, I decided to spend my free day doing what the holiday was designed to pause – I decided to work, physical work, as much as I could manage. I know I’m on the clock. Like that hourglass pictured above, my strong, healthy times are dribbling away. Being aware of the physical changes that are what everyone stares down in their own time, I want to make every effort to employ what I can while I’m still able.

Push mower

I pulled out that old school push mower and tackled my hated lawn. I’m trying to take away chunks of it, useless as it is, and replace it with native plants for pollinators. I jammed my headphones in my ears, wondering why I ever thought shoving that environmentally correct piece of equipment was a good idea, while at the same time being grateful that at my age, I still have the strength to make it work. When I completed that strenuous task, I decided I’d do something a bit more sedate, like grooming my small but very hairy dog, whose shedding skills are mighty.

Lily on the run

For all our years in our big backyard, Michael fertilized and aerated like he’d been taught as a suburban kid, who learned early that manicured lawns were a desired thing. I drove him crazy as I brushed our dogs through the years, discarding their fur all over the grass, certain that birds and other little critters would like the soft hair as nesting material. Ironically, years after his death, our biologist son, observing a cute little bird called a tufted titmouse plucking hairs from the body of a sleeping raccoon, and wrote a scientific paper describing that very idea Michael detested. He even created a new term for this behavior – kleptotrichy. I must admit I took an extra bit of pleasure tossing Lily’s hair all over my detested grass this afternoon.

Lily’s hair
Lily’s hair on the grass

Of course I’d give anything to hear Michael’s annoyance again, to experience the pleasure of working together in our yard. Being out there consistently evokes the happiness we shared in reclaiming all that space, neglected and overgrown with weeds, that we first attacked in 1978. I still grow vegetables and herbs, salvaging what I can from the scrounging rabbits, voles and squirrels, the fruits they don’t steal before I can harvest them. And the yard, so alive with so many different species of bees, wasps, butterflies, insects and birds was a part of the big plan.

Finally, after the outdoor jobs were done, I sat down to create more paving bricks for the new pathways which will take over more of that lawn space. Decorated with rocks and shells I’ve cadged from walks along lakes, on trails in woodlands and shells from the ocean-sides, I felt immersed in nature, experiencing that endorphin release that follows vigorous exercise and wipes away the aches and pains accrued in a full day of labor.

On this very full Labor Day, I got a bonus from the music that accompanies me and propels me through all my tasks. With all the years of listening and all the tunes I’ve heard, nothing is better than finding a song I’ve missed along my way. This one that crept up on me was released in 1994 and was written by Bonnie Raitt. The title is simple: “You.” The version I heard was performed by Bonnie and Alison Krauss. Out there, listening, where I’ve spent my physical energy for the day, I’m back in the sentimental space I often find when the labor somehow evokes the power of Michael and me. This song says it all, after work is done and I miss my life’s partner. Here are the lyrics and a link for your listening pleasure. I remembered a song by Roberta Flack – “Killing Me Softly With His Song,” one of Michael’s favorites. That’s what this Bonnie Raitt song did for me.

Bonnie Raitt and Alison Krauss

“You” by Bonnie Raitt

Nobody else can make me happy
No one could hurt me like you do
You were the only one that mattered
Then you were gone
Love had moved on
Left me alone

Thinking of you
There was never any other
You and I were created to dream

Isn’t it love that keeps us breathing
Isn’t it love we’re sent here for
Wasn’t that love we were feeling
Deep in our soul
Deeper than we know
Keepin’ me whole, out for you
There was never any question
You’ll forever on my mind
You and I were meant to be together
True hearts and the world of love is done

I might as well have been dyin’
When we were apart
When you came back
I felt the beating of my heart

You and I there was never any question
You will forever hold my heart
You and I were meant to be together

You
It was always you
Always.

https://youtu.be/DZki0PkSgAs

Press above to open link.

Music Head – Revisited

3ED2E6A8-A77C-48C9-9FF6-092214C273BAI wish I could study my brain. Or have someone else do it and explain how it works. I mean in its entirety. What a complicated organ. My own personal CEO. Zipping along and controlling what are seemingly infinite functions, many happening simultaneously. Dozens of scientists are out there, doing their best to pin down just how all the actions going on in our heads are integrated and what makes us the same as well as so very different.17770C40-4840-4B52-9FB0-7478A277F6E5

I’m busy thinking about my relationship with music. Was I pre-programmed genetically to be a music receiver? Or did it come to me from my family first, and then get reinforced by my cultural environment? When I was growing up, I never played an instrument. I never took music lessons. But there was a lot of singing. My mother sang all the time. I learned the songs of her girlhood. Some were in foreign languages, others were from movies, and many came from whatever music people were dancing to in the 1930’s and 1940’s. When I went to elementary school, we sang lots of songs. I remember singing about the Erie Canal and Old Man River. Singing in rounds occupied class time. Row, Row, Row Your Boat and Three Blind Mice come to mind. We started harmonizing a lot in 6th grade. Our music teacher was Miss Macaulay. She seemed ancient and was deaf in one ear. We mercilessly crept behind her and shouted as loud as we could to see if she could hear us. Another grade school teacher named Adrian C. Hartl, often played his violin to us.10D22900-0A79-4FEB-83F0-D4DD1AE916DA

At home, we sang at almost every family gathering. We’d eat our dinner and then all sing together, little kids through grandparents. We sang “You Are My Sunshine” and “Tell Me Why,” not the Beatles version. We sang “Swing Low, Sweet Chariot.” I always loved those times. Despite any problems,of which there were many, the singing connected everyone and was comforting. One of my dearest old friends told me that my family was the only one that spontaneously erupted into song during the course of a normal conversation. Music was the undercurrent of our daily life.2B8857DF-9256-45CA-9DFE-EBBFF685DC0E

One of my most vivid memories was being about 5 years old and accompanying my sister to an S. S. Kresge’s store in Sioux City, Iowa, where we lived for several years. That store sold 45 rpm singles. My sister was desperate to buy Hound Dog by Elvis Presley, her music idol. Less than a decade later, I was scrambling for every new Beatles release. I think all four kids in my family felt music similarly and leaned on it as a stress reducer. I’m still doing that.

By the time I was an adolescent, I had a small transistor radio. At night in bed, I held it to my ear, waiting for the top three songs voted by listeners which played at  10 p.m. on the WLS station in Chicago. Then I could go to sleep. I had a pen pal in Liverpool who told me about the Silver Beetles, the precursor name for the Fab Four. She called them “boss” and “gear” and I felt so sophisticated and European. I couldn’t get enough of The British Invasion, which augmented my love of rock and roll and soul music. At the same time I was listening to lots of popular music, my dad bought the family a portable stereo. I listened to vinyl which he brought home as promos from the store where he worked. What an eclectic assortment. I liked classical music by Mossourgsky and Tchaikovsky. I loved Bolero, even though my educated aunt told me I’d outgrow it down the road, when more depthful compositions would become  accessible to me as I evolved into the grownup world.  I listened to Mahalia Jackson and Mantovani, Dave Brubeck and Vince Guaraldi. I loved all the folk singers too.  Basically there was virtually nothing I didn’t want to hear.

In high school, I sang in mixed chorus. I remember our conductor, Eugene Pence. Everyone thought he was having an affair with our accompanying pianist, Margaret Lundahl. The high school gossip mill was in high gear. When we practiced scales we had to put our fingers in our mouths and get big sounds out while not letting our teeth or lips touch them. Going to that music room was a wonderful break from the academic grind. I can’t imagine school without music.