Big and Little

I’m spending a lot of time watching the Trump impeachment hearings. I’m compelled to do it for a number of reasons. First it’s living history. These past few years I’ve been keenly aware that all around me, there are changes happening which are not simply new. They are weighty, imbued with enough depth to alter institutions, leaving rippling effects which will extend far beyond my lifetime. I feel somber but I can’t look away. I absorb the disappointment. I feel that I’m witnessing a cynical death of the norms of democracy. A challenging task I’ve given myself. Hours and hours of presentations and testimony, uninterrupted by commercials, is as unique as it can sometimes be both compelling and boring. I’m reminded about how the technological advancements of soundbites and short clips have become the norm, what is expected, and the method by which so many people get their information. I’m part of all that too – I get news alerts on my phone and I subscribe to my favorite papers online so I receive a daily deluge of short articles, wide-ranging in subject. Still, I’ve always been a compulsive news viewer, wanting to make sure I see everything, know everything I can before setting any big event aside.

I was doing this during Desert Storm, terrified as I watched scud missiles launched into Iraq, and fearful of the costs of war and its potential escalation into nuclear confrontation. I watched the Watergate hearings, utterly fascinated by the undoing of Richard Nixon and unlike now, seeing our two party system function as a more unified front in its Senate hearings. Before that, I think my being glued to the Kennedy assassination and its aftermath was the first time I can remember my compulsive need to know. I was only twelve but I can still see the images in front of me, from the assassination through the journey back to Washington, the shooting on live television of Lee Harvey Oswald and the funeral ceremony. These larger than life spectacles altered the direction of my world. I’ve watched countless political nominating conventions and their incumbent power struggles, which for the most part, left me dissatisfied. And so many election returns. From age 20 forward, Michael was my partner in obsession. Our interests were well-matched and I miss his camaraderie and discussion as I sit alone now, mulling things over in my head.

Most current events feel very big to me. I’m worried about the planet. I don’t understand how anyone can ignore what to me is the absolute reality of climate change. Hearing people confidently dismissing the ever-increasing extremes of fires, floods, drought and brutal storms, referring to them as isolated weather events which in their view, contradicts the broad evidence of advancing global crisis, drives me crazy. As I recycle my cans, my plastic and my paper, trying to reduce my carbon footprint, I feel somewhat ridiculous, knowing what a minuscule drop in the bucket my efforts really are. What am I next to polluting fossil fuel industries belching carbon dioxide and greenhouse gases, or to logging corporations leveling rainforests, destroying habitat and carbon neutralizing powers? I am not even a grain of sand.

Last July, I finally made it to Glacier National Park, a place I’d been trying to see for almost three years. In my first two attempts, I was thwarted because of intense fires burning throughout the park. When I finally lucked out with the weather in 2019, weather which is dicey for most of the year, my happiness was dashed when I received the following information from the park guides: “It has been estimated that there were approximately 150 glaciers present in 1850, around the end of the Little Ice Age and most glaciers were still present in 1910 when the park was established. In 2015, measurements of glacier area indicate that there were 26 remaining glaciers larger than 25 acres.” The remaining glaciers are expected to be gone by 2030. With my relentless awareness of the political schism in this country and many others around the world, along with constant anxiety about the natural world, I have created a storm of free-floating anxiety.

Big thoughts, big worries. Over the years, I’ve learned that when “big” gets out of hand, the best approach is to break things down into smaller manageable pieces. Tackling little slices which can then go away becomes its own reward. Easier to deal with a single slice rather than the whole thing.

That works when I can exercise control within the context of my little life. But these global anxieties are outside my pie-cutting wheelhouse so I need to turn to other coping skills within my grasp. One tack I’ve employed involves my engagement with my immediate small world. When using social media, I punctuate my pithy political articles with interruptions like nature photos, flowers, clouds, birds and sea life. I’m posting a painting almost every day, from multiple genres, to remind myself along with others that there’s still so much beauty to appreciate in this world.

I’m practicing my own version of meditation. Generally that involves closing my eyes, consciously relaxing the parts of my body that feel tight or crunched up and listening to slow rhythmic music or nature sounds that deepen my ability to detach from the overarching load of the big issues. I don’t have a mantra or whatever else classic meditation involves but I’ve achieved what for me is as close to a Zen state as I can manage. What’s most interesting is that when I move into a mental space that hovers somewhere between consciousness and sleep, I find myself doing an interior sort of time travel through the chambers of memory.

Sometimes I find myself with my grandparents, especially in their apartment on 78th and East End on the south side of Chicago. We lived around the corner from them and were frequent visitors to their house. When you entered the vestibule on the first floor, a glass door separated that small room from the stairway that we climbed to their third floor apartment. The smell of my grandmother’s cooking seeped into that room, wafting into the mailboxes or so I imagined. The smells were of chicken soup and rendered fat mixed with onions. Fragrant peppery aromas of heavily seasoned meats were there, along with the buttery scent of golden, eggy bread. I am in a chair at the table with my legs swinging, eating slices of rye bread slathered with apricot jam, a bowl of sweet cantaloupe chunks in a bowl on the side. My grandmother speaks loudly in a thick Eastern European accent, a somewhat harsh woman, but yet generous.

I can be in the butterfly house at the Indianapolis Zoo on a hot summer day years ago when my son and I took a day trip to spend a little time together. I was telling him that I was a butterfly whisperer as the clouds of exotic species fluttered around us. He was rolling his eyes at my absurdity when suddenly a blue morpho landed on my toe and lingered there for a long time, attracted by sweat, suntan lotion and my red nail polish. A unique moment in time.

I feel the hot sand under my feet, the ocean swirling around my legs, my arms cutting through lake water as I kick seaweed aside. I feel the quiet, random, disconnected thoughts and images that appear and disappear whenever I’m immersed in swimming, which perhaps is my most unconscious while conscious state of being anywhere. I wander through the corridors of motherhood. I smell the tops of my babies’ heads, with the faint aroma of baby shampoo and lotion mingled with whatever that sensory magic is that you miss when it’s gone. I run the reels of them leaping into the air or across a field, the gifts of speed and athletic talent genetically sprinkled into them and lined up so perfectly for me to admire.

There are the times when I wander through the powerful emotional visions of my life. I see my father struggling with his failed coronary bypass surgery, railing that he refuses to have one more intervention. Then I bring my seven month old baby girl to his bedside who screeches in recognition of his face which in turn, causes him to reverse his decision and gamble for more life. Years later, facing certain death from cancer, he bemoans the time he won’t have with my little boy, not yet three, whose entrance into my dad’s world gave him more time to nurture my baby than he’d had as a young man with his own children. I see the profound look my son and my mother exchanged so many years later when she lay in her bed the night before she died. She got the years my father never had.

And of course, there are the many moments of me with Michael from our decades together and these few years apart. I can feel the surge of heat that coursed through my body the first time that he accidentally kissed the corner of my mouth in the kitchen as we washed dishes together. I can be in the front seat of our car on one of many road trips when we rapidly switched from life’s daily tensions to the more languid mood of vacation in our perfect synchrony as travel partners. Or I am by his side in a movie theater where we spent countless hours, hands twined together as we watched anything from the mediocre to the sublime. Even with his corporeal absence during these last few years, I can feel his breath on my neck, the pressure of his thigh against me, the sense of inhaling his essence as I hear the music which evokes the intensity of us that still exists for me.

And so I restore myself and find the energy from my inner resources to turn back to the big issues and face them down again. Alternating between the big and little, big and little, which is essentially what life really is, all strung together, taking turns, making its demands on all of us. So far, I’m still able to make things work. More corners to turn…

A Good Son

I really don’t need to be reminded that doing it now, whatever it is, is the only way to live. I can’t say I’m thrilled to always be mindful of the thin divide between being vibrantly alive one minute and dead the next. I’ve been parrying with that knowledge for most of my life. Maybe I began knowing that when I was four and my mother disappeared into the hospital for the first time. Maybe it was shortly thereafter when I learned that grownups made up stories to tell their kids when they didn’t know what could really happen. Maybe the mental dance started when my baby cousin died the day I graduated from eighth grade. The solid ground beneath my feet definitely shifted that morning. No matter what the inception of the slightly morbid attitude I always seemed to have, there’s little doubt that no amount of eye-rolling and blowback I got about it, particularly from my family, had any effect on me. My kids can attest to the fact that when they were old enough to bear it, I’d usually leave the house calling out over my shoulder, “if I die and never come back, I really loved you.” Annoying as they said that was, they now say the same thing to me. After the impossibility of dealing with their rugged father’s death, they now look at the world differently too. They’ve both gotten pretty good at maximizing their lives, or at least trying to. No more unlimited time for them. Of course what that means for me is putting my money where mouth is – I need to understand why they make their choices and try not to let my maternal anxiety interfere with them. Unless I feel there is something inherently or potentially unhealthy for them, I need to be supportive, understanding that they are trying to live the fullest lives they can, whether I like it or not. That’s a challenge for me. I suspect I’ll always want to protect them no matter how old they are. What’s lucky is that the intimacy we share in our family lets me know what they do, even if what they do scares me. Mostly, they try to appease that anxious side of me, maybe because they like me enough to make sure that whatever it is they’re doing, I won’t have a coronary or a stroke because of it. Kids can put you to the test in so many ways. That’s just part of parenting. But what isn’t necessarily part of being the kids is their sensibility that the choices they make have impacts beyond themselves. I know I’m in the lucky parent group because I’m generally a consideration in those choices. I also know that isn’t always the case.

“Singer David Olney dies during performance in Florida”

I was reminded of all this because of two seemingly unrelated recent events. The other day, a beloved musician who was particularly close to dear friends of mine, died on stage in the middle of a performance. How unimaginable. One second he was playing and singing, the next, he apologized, dropped his head and was gone. What a shattering transition. I’ll admit, that after watching my husband die by inches, there was a part of me thinking, how lucky, to go out doing what you love, rather than watching yourself slowly disappear. But I know that the quick deaths are hard for the survivors. I think about what I’ve read about Native Americans and their opinions on what they thought amounted to a good death. I guess that everyone has to navigate loss in their own ways, which are complicated by individual ideas, religious beliefs and a whole myriad of factors which subtly influence how they adapt to the inevitability of death.

This incident occurs at a time when my son is away for a few weeks in Colombia. A biologist by trade, this trip is one for pleasure, although his idea of pleasure includes strenuous activity and time spent away from the beaten path. A specialist in bird physiology, and as someone whose interest in seeing as many species as possible in the wild is enormous, I knew that this trip would take him into places with no internet. I also know that there can be dangers when traveling abroad and that his being out of touch would make me nervous. His career has for years, taken him to many countries, far, far away. You’d think I’d be used to this by now. But I never really am. I’m usually worried about all that could possibly happen. Anxiety is the legacy of my own upbringing, try as I may to undo it. The twist in this instance is that the juxtaposition of the musician’s death with my son’s trip, made me remember how I could just keel over myself at any moment, while my kid was far away and unable to do anything about it. After all, I’m the one in the same age group as the musician. And I know that anything can happen at any time. It occurred to me that although my son and I are mindful about expressing love for each other, I haven’t made certain, at least for me, that he knows that I think he’s the embodiment of a “good son.” We bandy that term around a lot. He will frequently ask me if I think he’s a good son and invariably, I’ll teasingly laugh and say no. This banter usually follows an episode of his absentmindedness, a trait that reflects one of his dad’s most annoying habits. If I had the proverbial nickel for every time I heard, “have you seen my glasses, have you seen my wallet, have you seen my hat, have you seen my keys, have you seen my grade book?,” I’d be awash in riches. My son never lets me forget his dad by mimicking this behavior on a daily basis. I marvel at it and always did. But as with everyone we love, you accept a few irritating habits and move on for the sake of the bigger picture. And with both of these absentminded guys, I certainly could, and still can, do that.

So what exactly is a good son? I remember my mother once telling me a story about a friend of hers whose son was a doctor. She pronounced in a solemn but somehow smarmy tone that the doctor/son had bought his mother a home. At that moment I heard my mom’s message very clearly. A good son was one who honored his mother by buying her a house. In mom’s world that’s what resonated. Not so much with me.

I remember exactly how I felt when my son was born. I was a little nervous about what it would be like to raise a boy. My daughter was already over 5 when he came along. I was anxious about knowing what we’d need to do to raise a male child in our culture, a male who would reflect the values his dad and I shared about gender equity, fairness and social responsibility. Knowing what proclivities are just built into a person is often hard to perceive. But that wasn’t true with our kid whose inherent sweetness was blazingly and immediately apparent. Even as a small baby, that kind, gentle nature just oozed out of him. Within a few days, my husband noted that this boy seemed very attached to me. Our connection was immediate, obvious and one that grew exponentially over time.

Sweet doesn’t necessarily mean easy. This little guy was very specific. He refused all bottles and started eating solid food at only a few months old. He was a lousy sleeper, waking every few hours. When he was old enough to talk he explained that he didn’t think it was fair that he had to sleep by himself. He had a relentless disposition and would explore an issue until there was nothing left to find. He craved physical contact and was remarkably affectionate. I was glad that as he grew, he never went through a phase when he stopped saying I love you or gave up hugging us.

He learned to read early and when he discovered Caldecott award books, read them in order of publication date, five at one time, all in a row. We realized he was color blind before school started and he could read the names of his crayons instead of knowing what color they actually were. He befriended a wide range of kids and had weird birthday parties with kids so disparate in nature that they didn’t like anyone there but him. When he was 7, he became a peer mediator at his school, settling issues between kids years older than he was.

Memories easily come flooding back. Our little guy clearly had an embarrassment of riches. He was intellectually gifted as well as athletically talented. He loved learning, never meeting a subject he couldn’t manage, even if it wasn’t a favorite. He was a musician. He showed great facility with languages and twice represented our community in the National Spelling Bee. He had issues like any other kid, but for the most part, raising him was easy and joyful. Being around him felt good.

The list goes on and on. A successful academic career culminating in a doctorate and beyond. An appreciation for the value of friendships and putting in the work to keep them. A deep seated respect for the natural world and a commitment to conservation. An egalitarian approach to people. So what does enumerating all these traits and achievements really have to do with anything? We were lucky and so is he. What is really more the question is what makes a good son? Is it what he’s accomplished? Not for me. It’s about who he is and how that translates into our lives. That first blast of sweetness remains the essential core of him. We always knew that our family was intensely bonded and loving.

As time has passed, those feelings have gotten richer. I’ve watched the painful growth that’s come from loss and felt the deepening self-reflection in my son. Even when he’s far away, he’s found ways to let me know that he’s aware of how I’m feeling and he makes sure he attends to my emotional needs. He gives me his time, making sure we share experiences together. This past year when he’s actually been living stateside, we’ve traveled together on a jam packed road trip that covered twelve states in fifteen days. We barely tangled with each other on that adventure which I think is miraculous. A while back, he asked me if I had any regrets in my life. I told him I was sorry I passed on a Paul McCartney concert which I had tickets to many years ago, too close to the death of my father for decorum. Or so I thought back then. He rectified that regret this year, surprising me with tickets to see Paul at the beginning of our trip. When he’s traveling in a place where my favorite food is nearby, he brings me a meal. Recently he surprised me with a life-sized cutout of Roger Federer, my tennis hero, for my house. Utterly entertaining and hilarious.

When I had both my knees replaced, he was here for me. My kid is mindful. He’s spending a lot of time with me while we have it. Things aren’t always perfect. But given life’s challenges for both of us, we’ve done pretty well. I suspect that the world would be a considerably better place if everyone had a good son. Like the one I have. I needed to write this out. I’m grateful that I had time to do it.

Best Friends

Dear Michael,

When you died it would’ve been nice if you’d have found a way to leave my best friend behind. But you took him with you. Of course, since you and he were one and the same, I shouldn’t be the least bit surprised. And that is really unfortunate when I’ve had a few days when a best friend is exactly what I need.

You know, most of the time I’ve got my act together. My successful installation of the essence of us, into the core of me, generally suffices for the wear and tear of the daily grind. But every now and then there are one too many negative events. The cumulative effects of them feel too big and I feel frustrated, angry and overwhelmed. I want my best friend. If I can’t have you in the flesh, the habit of writing you letters that I developed almost immediately after you died will have to do. So here I go.

I started feeling rankled a few weeks ago, just before New Year’s. I bumped into that display of greeting cards you and I’d exchanged over the years, the one that was displayed at the museum exhibit of your life which passed for a memorial. I really think you would’ve liked how that experience was structured. Anyway, after that was over, I slept with that thing in our bed for about six months. Having some palpable evidence of us felt right and necessary to me. Eventually I moved it to your nightstand where it promptly got buried under an avalanche of photos, the ones I’d lifted from 45 years of albums and used to make the slideshow at your event.

I lost all control over chronology of those pictures when I assembled that slideshow, and for ages, I just let those photos sit there, too exhausted and lazy to refile them where they came from. Shortly after the two year anniversary of your death, I felt established in some of the new behaviors I’d developed for life without you. So I decided to attack the photo pile, several at a time and put them back in the albums, no matter how long it took. That’s when I unearthed the greeting card collection again and thought, huh. I hadn’t looked at it in awhile. So I opened it. I didn’t get past the first card.

You don’t get to know when you’ll be leveled by grief. At least I don’t. I was flooded by it, literally and figuratively. Not my normal. You know I’ve never been much of a crier. But I couldn’t stop and really, I didn’t think I should. I store a lot of anger and hostility by nature and these current times are feeding my rage on a daily basis. I’m furious at the governmental sideshow in this country, not to mention the blatant disregard for the need to address climate change. I spend too much time seething even as I try to make some sort of impact on my community, small though it may be. Holding in my sadness over how much I miss your company is not a viable alternative with all those emotions roiling around. The kids were worried about me when this round hit and wanted to help, but it’s hard for them when I can’t cope. It took me a couple of days to get myself back together. I thought of my mother and the twenty five years she spent without my dad. I’m telling you, I don’t want to replicate her experience. You and my dad, both gone at 67. Ugh. Sometimes telling myself how lucky I was to have had our relationship just doesn’t work. Yes, I’m sorry for people who weren’t and aren’t as fortunate as we were. But I’m also angry and jealous that some couples whose relationships I can’t respect, get to have the extra twenty years I thought we’d have. Not a pretty thing, but the truth.

So that’s one piece of this whine. For the most part I’m good at self-reliance and independence. I’ve always been that way, certainly when you were still here. I wouldn’t have wanted to be any other day. But sometimes it gets old, being the sole resource for everything all the time. We both know I’m not great at asking for help. After all the years of taking care of my mom at a time when she should have been a capable person, going down that road is not my first choice. But my competence is a double-edged sword. On one hand, it feels good to manage mostly everything on my own. Every now and then, though, it would be nice if someone would check in to see if I was alive. That hermit life I predicted for myself sometimes feels pretty real.

There are practical realities aside from emotional ones. Even though you taught me how to do a lot of things, there’s some stuff that’s beyond my skill level. I’ve done a lot to the house in the past two and a half years. I got a new roof and gutters. I also had the garage re-roofed in addition to siding it. Last summer, I signed a contract to have the house sided too. I’m still waiting for that contract to be fulfilled. The company which was supposed to do the job is family-owned and operated. The daughter of the owner had a medical emergency last summer which effectively stopped all work. When jobs resumed, mine was at the end of the line. First it was to be completed by November. That month came and went. A conversation with the contractor elicited an offer to take 10% off the price if the job wasn’t done by January 1st. That date also came and went. Two weeks ago, I started sending inquiries about dates by text and email which received no response. I finally called the office and was told l was still on the list and someone would get back to me with specifics. I’m still waiting. As you well know, a house built in 1893 has its issues. Our ancient kitchen drawers are getting ready to die. The middle one has caved in and won’t slide in and out any more. I emptied it and have an idea of how it might be repaired. I also know I’m not talented enough to do it. Same for a storm window in the blue room where a piece of wood has detached from the glass. The window is behind the large record rack you built. Lots of labor to get everything moved before making repairs. Groan. You could do all of this without blinking. Paying people to do these small jobs get too expensive which makes me very anxious. One thing after another. The garage door decided it didn’t want to stay closed. It kept going up and down, up and down, as if possessed. Fixed that problem after a process of trial and error. Then a carbon monoxide detector fritzed, over and over. I finally fixed that too. When a piece of the gear shift on my car fell off, I duct taped it but finally caved and brought it in to the mechanic for a legitimate repair. Endless chores. So wearing.

I know I need to push past the small stuff. After all, in the scope of things, what I’m moaning about isn’t much. My knees are so much better that I can walk for ages. You wouldn’t believe it if you saw me motoring along. I go to Meadowbrook for recreational strolls and take lots of photos. I’ve got projects. I’m knitting. I’m still gluing rocks onto paving bricks which I’ll place in the garden in the spring. I’m actually entering some pics in the park district’s amateur show. I remain in my book club and I’m starting three classes in a few weeks.

I even have a few trips planned. Even with all that, though, I’ve had lots of angst. Hideous cancer is happening around me to people I care about. That elicits confused behavior as I re-live our personal trauma and try to figure out what’s appropriate for me to do or not do. I’m anxious to help but I know I need boundaries. It’s tough for me to manage. So I decided to do some self-care in the midst of this mini-meltdown that kicked off this new decade. I found a forgotten gift certificate for a massage last week and quickly made an appointment for myself. Tuesday afternoon I headed there right after the pool for some welcome relaxation. I’d never been to this facility before. Instead of heading to a locker room to change clothes, that process took place in the same place as the massage. I’d never met the therapist who was asking questions as I removed my jewelry to expedite getting down to the treatment without wasting too much time. I put all the items in my pocket and stuffed my socks on top to keep my things secure. Then I had my massage which was really quite nice. When it was over the therapist left the room and I started getting dressed. I pulled my socks out of my pocket and all my personal items came with them. I instantly realized that my mother’s wedding ring, which I wear daily, in between the rings from our life, was gone. That was impossible. I started looking everywhere but I couldn’t find it.

The therapist came back into the room and helped me look around. There is a shag carpet, variegated gray, directly under the massage table. Each strand of the rug is about three inches long. The slim little band wouldn’t be easily visible in that sea of nubbed material. The therapist suggested that perhaps I hadn’t worn it that day which seemed really unlikely to me. Every night I take my rings off and put them in the same spot on my dresser. And every morning I go back to the dresser and put them back on. But I couldn’t absolutely say that it was impossible that I’d left it that day. So I raced home and checked the dresser, the floor, the drawers, my pants pocket and even my socks. No ring. I ran back to the facility again. I waited until the room was open and then the therapist, another worker there and I ran our hands through that rug for twenty minutes. I found a paper clip but no ring. I dejectedly went home and proceeded to disassemble my house, my car and my purse one more time. The ring had literally vanished. Since then I’ve texted the place twice and emailed them my one photo of the ring. They haven’t responded. I think they feel like they’ve done what they could. Somehow I’m supposed to get used to the fact that I’ve lost this ring forever. How did this happen? I went to get a relaxing massage to defuse my bumpy beginning to the year and I lose one of the few things that has meaning to me. I know you’d say that stuff is stuff and you know I’d agree. But sometimes a material item is more than that. The kids told me that one time when you were driving them to Indianapolis to fly to Florida to see your parents, you’d realized that you left your wedding ring at home and turned around and went home to get it. On one of our last trips, you took off your ring and left it in one of the little dishes at the security checkpoint. You were miserable. Miraculously, I found it at the airport on our return trip, deep in the bowels of the Transportation Security Administration’s lost and found.

So you know how I feel. Bereft. I know that I’ll get used to this eventually. I know worse things have happened and can happen. But I wish you were here. Having you around always made the rotten things more tolerable. How about a nice, cosmic visit tonight?

The Cancer Treatment Quest- Chapter 9 – Be 278

In late August, 2014, we were headed to the University of Chicago to meet with Dr. Salgia, a thoracic cancer specialist. I couldn’t figure out how we wound up with him as there was nothing in his profile to indicate that he had experience with Merkel Cell carcinoma (MCC). I’d reached out to the University of Chicago dermatology department, specifically to those doctors who were heading up clinical trials for melanoma. As MCC was a skin cancer, I thought that there might be a possibility of a different treatment for Michael in their arena. I’d ramped up my research and learned about the new immunological drugs that were in various stages of development. After Michael’s cancer had survived both radiation and chemo, it seemed like we needed something different.

That “different” might be a targeted therapy that would assist his own immune system in attacking the disease. We’d gotten our local oncologist to send blocks of Michael’s tumor tissue to a genetic analysis facility in Boston, Foundation 1. We hoped to find some clues that would make him eligible for one of these new drugs. Daily, I was watching the Clinical Trials website which listed which trials that were pending or recruiting. I learned that one drug called Yervoy or Ipilimumab, had shown some positive results with certain melanoma patients. When a trial with that drug went from pending to withdrawn, I wrote the principal investigator to find out if the trial was pulled because the drug was useless. I was relieved to find out it was a financing issue instead. I was grasping at anything that was an option, other than resigning ourselves to another round of chemo which was unlikely to do anything but buy a little time. In any case, I couldn’t figure out how my inquiries had gotten us to Salgia, but up we went anyway, on a bright, sunny day.

Michael was asymptomatic despite having three glowing cancer spots on his skeleton. A more refined scan report showed activity on the spine, a rib and a hip bone. He was pain-free. We were anxious to hear what this experienced doctor might tell us. When we arrived, Michael went through a physical exam and a lengthy interview with a young resident. When Dr. Salgia came in, I asked him why we were seeing him instead of someone in dermatology. He informed us that he knew everything about Michael’s case. He’d come to the University of Chicago from Harvard. A former colleague of his from Harvard, now working at the Seattle Cancer Care Alliance, was one of the researchers I’d been writing about Michael. He’d forwarded all my emails to Salgia who wanted to have a look at this interesting case. The truth was, he didn’t have much to offer. The Seattle doctor was running a trial for MCC patients with a new immunological drug called a PD L-1 inhibitor. Essentially, that drug could interfere at the cellular level, with mutations that inhibited immune cells from doing their job. A much more individualized treatment in the category of what I called big science. But Seattle was far away and outside our economic wheelhouse. That trial would eventually become available closer to home. But for the present, Salgia asked us to forward him the genetic analysis of Michael’s tumor tissue when we got it and sent us on our way. In the meantime, I continued to share everything with Dr. Chris Bichakjian, the doctor at the University of Michigan who’d given us the second opinion after Michael’s initial diagnosis. This very busy man who we’d seen only once, had somehow turned into an attentive and trustworthy resource. He would remain on our team through everything.

We met with our local oncologist, Dr. Luyun, who decided he was going to scan Michael more frequently. In the meantime, I’ve found some articles that suggest that a big dose of radiation to each cancer hot spot can potentially have a cascading effect to hold disease progression at bay for awhile. He referred us to radiation oncology although our original team member in that specialty was gone, preparing for his own kidney transplant. We would be with Dr. Stanic for the duration of Michael’s treatment. Stanic seemed very smart and confident. While we were in a situation of no immediate intervention, we decided to skip town again, destination Lakeside, Michigan. We’d been traveling there every summer for years, staying at the historic Lakeside Inn and experiencing welcome relaxation there. We felt so lucky to get another chance to feel that again.

When we returned home, as we are between scans, Michael headed off for a camping/canoeing weekend with our son. I use this interlude to try finding some internal balance. Being engaged, full tilt, in the daily business of trying to be in the present, trying to appreciate the unexpected time we’ve had since the dire prognosis of November, 2013, is a huge challenge for me. Michael’s job is to stay focused on trying to keep his body as healthy and strong as possible as he faces mortality every day. I am his partner, his caregiver and his advocate. I feel isolated. I am climbing the mountain of emotions every day by using my intellect to transcend the writhing, terrified part of me. There’s not much available locally in the way of support for dealing with an orphan cancer. After poking around on the Internet, I finally find a MCC support group. You have to submit an application and agree to some rules before being admitted. After I join, I realize that the group administrators are all based in Seattle where the doctor I contacted about Michael is located. There are numerous heart wrenching stories posted but it’s not long before I notice that most of the exchange involves advising people who either themselves or their loved ones are recently diagnosed, should try coming to Seattle. The conversation I’m looking for which would focus more on emotional support and suggestions for undiscovered treatment options isn’t there. Within a week, after I initiate that type of discussion, I am informed that I am on probation as a group member. I am stunned, appalled and furious. I write a long point by point letter explaining myself but I realize that I’m actually banned from the group already. I was a member for eight days. Getting kicked out of a cancer support group was stunning. I did come away with one friend who missed me when I disappeared. Her husband,who was 10 years younger than Michael, would only have 15 months from diagnosis to death. But my online friendship with his wife Amy endured. One small comfort.

September 1, 2014

I just watched three American goldfinches drinking from my birdbath. Yesterday a hummingbird was drinking nectar from one of my potted lantana plants. Butterflies and bees are gorging themselves on my Mexican sunflowers, blue mist shrubs and anemones. The garden is alive with amazing critters. In the midst of my enormous anxieties about everything, I am grateful to be filled with wonder every day at the haven I created here.

Moving into fall, we are juggling trying to live our best lives while knowing that insidious MCC is parked in Michael’s body. We see Dr. Stanic for a consultation which turns into the preparation for a blast of radiation to the active cancer spots. At the next appointment with Dr. Luyun, he asks if the burning has begun. He also reveals that when Michael was initially diagnosed, he’d wanted to do adjunct chemo but was outvoted by the surgeon and radiation oncologist. Michael and I are disturbed by that revelation because we’ll never get to know if the cancer burden in his body back then was small enough that it might have been wiped out. Retrospect isn’t a good friend when you’re dealing with cancer. We’ve already been wondering if we’d swapped dermatology appointments in 2012 if the MCC could’ve been caught before it metastasized. Then there was the long interval between scans – if caught sooner would things have gotten so dire? And now this window into the disagreements within the team has been revealed. We realize that surgeons want to cut, radiation oncologists want to burn and medical oncologists want to prescribe systemic treatments. Knowing the vulnerabilities of the treating doctors helps inform future choices. For now, radiation is happening. Dr. Luyun says Michael is still too healthy to be degraded by more chemo. He says, “you don’t want to be an interesting patient, but you are. You shouldn’t be here.” The tumor board says, more power to you.” He suggests that the cancer is indolent, slow-moving and aimless, causing little pain. A rather peculiar description for this aggressive killer, in my opinion.

We have learned a few more critical facts. The Foundation 1 genetic analysis came back and revealed that Michael’s tumor tissue had 5 mutations, 2 of which are being addressed in clinical trials, primarily with oral chemo. We will send that to Dr. Salgia for his analysis. We also have discovered that metastases to bone exclude patients from clinical trials as they are not considered “measurable.” This news is very depressing. The MCC experts feel that a clinical trial is where Michael belongs as he is still healthy enough to deal with the often daunting side effects of the treatments. However, a conversation with Dr. Stanic reveals that he saw and measured soft tissue involvement along the blazing spot on the rib. He’s not a big fan of clinical trials that are risky and make patients guinea pigs who can get remarkably ill. We take that view with the proverbial grain of salt. We take his marked scans and say thanks, knowing that we’ll be the ones making the choice for what comes next. Shortly after this consultation we heard from Dr. Salgia who has a suggestion for a targeted therapy for one of the genetic mutations, coupled with another drug which is supposed to help sustain bone health. He recommends that we proceed with the radiation and if there’s a change in Michael’s status, to begin his recommended regimen.

Michael and I process all this information. At the end of September, we head to the Apple Pork Festival in Clinton, Illinois. We’d come upon this event decades earlier on a weekend drive through the back roads of central Illinois. We went for years but after a trying time there with our four year old daughter, we’d forgotten about it. Going back felt wonderful. Being in the crowd on a hot day, listening to music, looking at the wares of local artists while downing funnel cakes and lemon shake-ups pushed the cancer away.

Michael had the radiation treatments in October. They were primarily uneventful except for some discomfort he felt lying on the metal table. We are doing our best at living a normal life, spending lots of time with each other along with our kids and grandkids. I watch Michael systematically working his way through his lists of things to do. I find it instructive. I continued looking for the next treatment steps which I know are inevitable. I believe that the clinical trial in Seattle is branching out into the midwest. If it does, we think it’s the best next option. Michael still is very strong and healthy which seems crazy but is true. The oral drugs or second line chemo would definitely be a beating. Remaining vigilant and watchful about what the MCC experts think is right seems like the best plan. There are more scans at the end of the month. We decide to leave town again, this time heading for Pere Marquette State Park. We stay in a lodge which is very similar to our winter refuge, Starved Rock.

October 20, 2014

The trip to Pere Marquette was so wonderful. The weather turned pleasant, mild and sunny, and the autumn colors were spectacular. The lodge food was good and we had the pool and hot tub to ourselves most of the time. We hiked in the woods although my version of hiking is pretty pathetic given the state of my knees. It was very quiet and peaceful; the views of the river from the bluffs were grand as were all the aquatic birds including white pelicans.

As usual, being away lets me momentarily set aside MCC and being with Michael who looks and feels so good, is normal and comforting. I have to watch it though, because I can’t be lulled into complacency. I know I can’t take another hit like last November’s diagnosis. The hits will come but I’ll be more prepared. No more blindsiding.

We went to Grafton which is a cute little town and drank local wine on a terrace overlooking the water. We went to Alton where the Lewis and Clark expedition kicked off. A nice mixture of nature and history. I didn’t want it to end. On the way home we stopped at a decent barbecue place for dinner and headed straight to the movies before going back to the house. Squeezing out every second of normal that we can get. But reality is still right here.

October 27th, the next scan. Describing the anxiety which looms between the actual imaging and the results is almost impossible. We try to stay in our moment but knowing that your daily life can change in an instant is hard to carry. Teetering on the brink is torturous for me – Michael’s stoicism is a well-practiced skill for a man of his age. But he gets dark and withdrawn. We are both doing our best, most of the time. We’ve learned to schedule the follow-up appointment for the day after the scan. And there isn’t much new. Everything is stable with the three radiated spots still too irritated to know if they responded to treatment. None of the doctors want to introduce any treatment when Michael is so stable. The dissonance between the nature of his cancer and his apparent wellbeing are disconcerting at the very least. I ponder the holes in his immune system along with his strength and longevity genes. The mystery of life is very big.

The retired life is very much on my mind. I am wanting to give Michael his dreams as much as I can. A life-long, diehard Cubs fan, and a former baseball and softball player, I remembered how much he’d always wanted to go to Cooperstown, New York to visit the Baseball Hall of Fame. He is worried about the finances but I insist that we go. And whoosh. We are suddenly driving east. We’ve decided that we’ll go to the Hall of Fame and also to Hyde Park, home of Franklin and Eleanor Roosevelt. Despite all the cancer fear and distraction, we both maintain our interest in history. We drive through the beautiful Adirondacks and Catskills, through the Hudson River Valley, crossing the river on the Rip Van Winkle bridge. There is an absurdly beautiful Vanderbilt residence along the way.

Michael really enjoyed the Hall of Fame. Both of us were fascinated by Hyde Park and the giant lives that both Roosevelts lived. Places like that are thought-provoking and help provide at least a momentary perspective on our places in the world.

At the Hyde Park gift shop, I find myself most interested in Eleanor and the principles she championed in the midst of challenging personal issues. As our trip is coming to a close, I can feel that both Michael and I are struggling to hold ourselves together. We are heading back home at just about a year from the dreadful November diagnosis of 2013. He’s already outlived his prognosis. We are gamely living our best lives but we are eroded. I’m inspired by Eleanor and I buy a magnet to bring home.

Our last stop is Niagara Falls. Michael has been there before but I haven’t. While I stand marveling at the power of the water, Michael tells me that when he was a young boy, living in Rochester, New York, his family visited the Falls. At one point, his father lifted him up and dangled him over fence, as if to drop him. At that point in his life, it was the scariest thing that ever happened to him. The symbolism isn’t lost on either of us. We’d managed five trips in this perilous year. We were headed toward another Thanksgiving that we didn’t think we’d get. Scary times were still ahead.

No Cancer Story Today

Just when I think I’m going to proceed smoothly, step by step through Michael’s orphan cancer story, I screech to a halt and am unable to string any words together. At this moment in time, I have two friends who are caught in cancer world. One has been in hospice for about five months. She is waning into the inexorable end of life that awaits when treatment options run out or fail. The other friend has been rudely jolted out of a lengthy remission and is now preparing for part two of an aggressive intervention which began last week. I reach out to their families and make myself available in whatever capacity I might fill, if only as a listener who can hear what goes along with these painful times, the profound emotions and the helpless feelings which afflict those who walk this road with their loved ones. I can do that.

But when I sit down to read my journals, emails and notes for my next chapter about Michael, I can’t do anything. I know it’s my PTSD, the dramatic internal response to the years of erosion I experienced during the rollercoaster of cancer treatment. Just last night, I was listening to a news report that announced the great news that cancer deaths are down in this country, particularly in melanoma and lung cancer patients. All that really means is that the introduction of targeted immunotherapy drugs is prolonging life for some patients. It’s misleading. Michael lived for awhile longer with one of those drugs than he would have without it. I’m grateful for that. But he wasn’t cured. I need to step away for a bit. Despite being in two and a half years down the road, I still need to take a cancer break.

So I’m going to write about other things today. I don’t know about you but I always feel like I’m behind. Behind, pulled in too many directions, too much to do. I also feel pressured to get things done as fast as I can, because after getting used to the knowledge that untimely death is real, I know every day could be your last. I’ve scratched a lot of items off my to-do lists but there are big jobs just sitting there staring at me. I decided the time had come to hit my closet that’s still full of clothes I no longer need or want. Time to sort things out, eliminate and brutally assess what used to belong but doesn’t any more. I reached all the way to the back and pulled out the first item, a zipped bag. I had a pretty fair idea that it contained my wedding dress, put away when I was a twenty four year old kid. 

Before my wedding, I’d been living with Michael for years. We were taking our time, getting to know each other, making sure that if we made this move, we’d do it right and stay together forever. We were also practical – we needed a decent vehicle and figured that wedding money would go a long way toward acquiring one. So we decided to do a streamlined ceremony, just family, few frills, maybe register for a few pots and dishes, and spread the word that we were looking for cash. We weren’t totally crass, just down to earth. After considering everything, buying some ridiculously expensive dress that I’d wear once seemed pretty absurd. White was out too. There was a moderately upscale fashion boutique in our local mall called Brooks. I decided to take a look at the evening/party-ish styles they had in a small section at the back of the store. And there was this dress. It was cream-colored with painted blue flowers. I thought it looked romantically Victorian, with a high collar and a plunging bodice which laced up with a satin ribbon. The sleeves and skirt were sheer with delicate designs at the cuffs. It had major swirl. It was perfect for me and I scrounged up the fifty dollar price. The dress was actually the favorite part of my wedding day, aside from marrying Michael. His family and mine were like oil and water and I most particularly detested his old-monied grandmother who considered herself superior to virtually everyone. I carried lots of sour memories from that day. But we were able to get the money we needed to purchase our new vehicle. We had the ceremony and a dinner, went back home and later, had a big bash with our friends. Then I zipped the dress away. I didn’t know anything about preserving such a fragile item but I did put it in a dark bag thinking that maybe one day I’d pass it on to my daughter. That ship sailed. My daughter was eight inches taller than me and not close to appreciating the type of style that was most attractive to me.

When I unzipped that bag, I hadn’t seen the dress in forty three years. I was prepared for seeing a moth-eaten, shredded moldy-looking thing. Imagine my surprise when I pulled it out and found it in pristine condition, looking exactly the same as it did the day I put it away. I spread it out on my bed so I could examine it for awhile and remember everything, feeling all the feels. I figured I would take a few photos of it and then bag it up with the other items next in line for discarding, still lurking at the back of the closet. But as I straightened it out, setting it up to get the best pictures, I felt myself getting more and more attached to it.

I was thinking about how irrational I was being. I have two grandsons. There’s no likely legacy for this dress that I can even begin to imagine. Still, even after taking the photos, the dress stayed on the bed.

I decided to take a break and tackle the next task, the last drawer in my four drawer file cabinet. That was another overdue task – I’d managed to thin out three of those drawers and thought the last one was nothing but empty hanging folders. Surprise, surprise. When I pulled it open, I found a big bunch of files which I couldn’t recall having put there. And I hadn’t. Evidently, Michael had decided to appropriate some of my space with his “unable to let go” stuff. I pulled out a bunch of them and brought them into my bedroom, sat down carefully next to my wedding dress and began sifting through these unexpected treasures. Michael, the gift that keeps on giving.

I found newspaper articles dating back to his days at the Record Service. I found all the mock-ups of his city council literature that he designed for his campaigns for alderman. I found all his statements of economic interest that he was required to file during his twenty years as a public official. I’d forgotten that he served on the cable commission for our city when cable was first a “thing.” I did remember the plan commission and the food bank board. But then there was the Campustown 2000 task force. Decades of public service.

There were legal opinions for when he worried that his votes might be construed as conflicts of interest because I worked in a government office. There were funny notes between the beleaguered Republican mayor and Michael over the crazy behavior of the one Republican alderman on our city council. An entertaining folder was that which contained all his hilarious satirical letters to people who annoyed him, on both personal and political levels. But the best discoveries were photographs and contact sheets that were set aside, maybe for sorting in his free time which never came.

After he left the music business to become a teacher, the years were so packed with his joy at finding his vocation that these files never again crossed his mind. So now I had a new project, sifting and sorting through these treasures, a new poignant and sweet assignment. My wedding dress hung on a rod in front of me so I could look at it for a time. Then I zipped it away again and put it back in my closet.

Next, I turned my attention to the music. In the fall of 2016, I’d finally prevailed upon Michael to sell our massive collection of vinyl and CD’s. Although I listened avidly to lots of it, I wasn’t close to being an expert on the value of everything he’d accumulated after 27 years in the record business. His knowledge was encyclopedic and was infinitely more sophisticated than me in terms of what it was all worth. During the years when he was in school picking up all the education classes he needed to teach, he’d sold some of his collectibles on Ebay. We’d also had music garage sales to supplement our income during that time when he was an income-less student at age 50. All I could think of was how ill-prepared I’d be to sell those 7500 items during the grief I knew would follow his death. So to make things easier for me, he unloaded almost everything. Note the almost. He was always fooling around with his computer, burning CD’s of one sort or other. The truth is, I didn’t pay much attention to his music projects, although he mentioned lots of ideas he wanted to make real. I remember one on his list to make a collection which included every song with a single woman’s name as its title. I’d usually just roll my eyes at that stuff.

When he died, I spent a long time sorting through what he hadn’t sold. I found all kinds of collections he was assembling at the same time he’d been getting rid of the bulk of the music. I laughed when I saw how many covers he’d found of “Who Do You Love?” and “Mona.” Those were high priorities on his list of things to do. Music going out the front door and coming in the back one.

Sorting out and eliminating the accumulation of all this stuff takes a long time. I know that there are certain things I’m never going to part with because I simply can’t. Looking at them, seeing Michael’s art work evolution on his CD’s, marveling at his consistency in humor and musical growth is too precious. I still haven’t looked thoroughly at everything, and listening to what he left behind could take more years than I have left. One thing is certain. Michael left me a lot of life. Immersing myself in it is like being wrapped in a comfy blanket. I’ll get back to the cancer story eventually. I still think it would honor Michael and benefit people who might face the same life-changing situation that was thrust upon us. One day soon, I hope…

History Lessons

No one has asked me my opinion. I’m not writing about cancer or grief or memories. I just feel compelled to share these thoughts. Right now, in the middle of a relentless onslaught of challenging news, I am thinking of ways to cope. Acts beyond my control threaten to start wars. Climate change, so clear to me, isn’t receiving the critical attention it needs for all the wrong reasons, led by ignorance and greed. I need a road map to help myself keep from being overwhelmed by all this, without tuning out completely. For me, this is not the time to look away. Actually, for me, there is never a time to look away. As a resident of our planet, I feel a responsibility to pay attention to what’s going on, both locally and internationally. The truth is, that despite being thousands of miles away from some of the most visibly stressed parts of the globe, we are more interconnected with each other than we’ve ever been. And we are having an impact on what binds us together or what tears us apart, whether we’re aware of it or not. I remember living through many scary times. I remember being as angry back then as I am now. It’s hard to keep all the issues and events of the past straight, especially when we feel unsettled and upset. But we have history. We can turn to it for balance, to see how we got here. Then we can take whatever steps we’re able to do in our little lives to affect the direction we’re going. To make a difference. To live mindfully and with purpose. To not feel powerless and overwhelmed. I hate those feelings and I’m looking to push them away, to not feel victimized.

Maybe the big picture feels like too much. I know it sometimes feels that way to me. Taken as a whole, the political problems, social problems, climate problems feel like a giant ball about to roll over me. And that’s without taking into consideration the business of daily life and personal issues. The only way to cope is to break that big ball into smaller, manageable pieces. I’ve always felt that if we try thinking critically, we can find a way to make small changes that are meaningful, even in the microcosm. Multiple microcosms eventually add up to that big picture. At least that’s what I think. So how to go about this process?

I look back. I analyze. I try to learn about what happened in the past, to find whatever logical incident or series of them led to the next event. Some people think looking back means you’re not moving forward. I don’t agree with that. I think examining the past informs both the present and the future. Being both retrospective and introspective can prove insightful, helping to unearth strategies which apply to now. Recently I’ve been trying to reorganize my life’s photos. Sorting through them has been instructive. I see patterns and consistencies. I was taking the same type of pictures in my twenties as I take now. I like sky, clouds, bodies of water, horizons. Although over forty years old and faded, through these old photos I recognize the historical thread of a need to acknowledge perspective, to appreciate my place in the universe. A big sky and an endless horizon remind me that I am only a tiny piece of the world around me. The soaring mountains and fabulous landscapes which have survived for millenia haul me back from the anxiety-producing headlines of the day. I see that certain problems are simply too big and beyond my puny power. That vantage point helps me understand what is actually within my power. Respecting nature, and trying to learn how the marvels around me evolved, gives me direction. I want to be a conservationist. I want to create habitat for the creatures who share this planet. I marvel at the remarkable geological conformations I’ve seen, trying to comprehend that the striations I’ve seen in a place like the Badlands is actually an historic era, a time of water and forests, long since squashed by time into nothing but a thin line in the beautiful hills in front of me.

With that understanding, I realize that I have things to do in the present. I can donate money to organizations and candidates who want to preserve what I want to preserve. I can sign petitions and go to demonstrations. I can teach my grandchildren what I know and try to instill similar values in them. I can engage myself with young people whenever possible to inform and influence them. I can have purpose in the part of my life where I engage with the tangible, physical world.

Then there is the more esoteric life that concerns beliefs and attitudes about the socio-political events which are currently happening in our culture and abroad. Looking back helps with that as well. In looking through that big stack of photos, I realize that our family was always getting educated about the history of our country. While we vacationed for pleasure, we made room for exploring how this nation came to be, going back to Jamestown, York, Williamsburg and Washington. We went to Mount Vernon, Monticello, Montpelier and The Hermitage. We saw the hallmarks of slavery. We read the Constitution and the Declaration of Independence. We went to Civil War battlefields from Georgia, Virginia and Tennessee to Gettysburg. We viewed the death toll of war at Arlington National Cemetery. We saw the Capitol, the National Archives and the Supreme Court. As a family, we shared these experiences and hashed out our political views. For us, politics was not something that had little to do with us on a personal level. Politics is how you lead your life. I am infused with my political ideology and I try to live in a way that reflects that ideology. So did my husband and so do my kids.

The history I’ve studied has shaped me and also gives me plenty to do. I can donate money and time to causes and candidates whose views seem correct to me. That means they will provide benefits to the community at large. Locally, I’ve served my community as a volunteer and public official, as did my husband when he was alive. I’m still making a contribution of my time. I try to be vocal and to engage in dialogue that’s aimed at creating a principled and fair society. Some of the issues seem small but taken as a whole, their benefits can add up to significant improvements for many. Going back in time, exploring the past, developing a world view and trying to implement it are a way of coping with the dystopian political climate that has become the norm in my country during the past few years. I was by no means satisfied with my culture during past national administrations but now, we are living in times that are unrecognizable to me and diametrically opposed to my understanding of what we are supposed to be. I don’t intend to fold up and disappear. I want to remain present and unwavering in what I think is a moral, principled approach to this mad hodgepodge of governance. I want to stand with those who feel the same way as me and wrest control back from those who have twisted our country into something that doesn’t reflect the lessons of the past. Except the bad lessons. Being aware of history as it happens is a remarkable sensation. When what we observe is positive, that awareness can feel enriching, elating. The discovery of the polio and smallpox vaccines must have felt that way. I know the signing of the Civil Rights Act felt at least like the beginning of a wave of positive change. The correlating awareness of a negative trend has the opposite effect. Watching the dismantling of environmental laws, laws which reinstate discrimination against women and minorities, and the absence of respect for science and intellect are deflating and despair-inducing. These times demand an examination of history along with the determination to resist what you know is deleterious to a just society.

My husband was a participant in a group called the American History Teachers’ Collective. They engaged in conferences, seminars and presentations which focused on a wide variety of topics during the many years he was part of it. Scholars and authors were brought in to share their areas of expertise. He would come away from those gatherings motivated and brimful of new ideas to share with his students. Those who think looking back is a stodgy old business are wrong – those studies are energizers which stimulate new thoughts and actions. Just what we need in time like these. The photo above was cut from a tee shirt from the AHTC and is sewn into the mourning quilt Michael left for me after his death.

Something else I’ve got a decent history of is my garden. I’ve been keeping a garden journal for many years, noting all the plants I’ve put in, the ones which have lasted, the ones that have disappeared. I didn’t realize that I was studying phenology, the observations of cyclic and seasonal natural phenomena, most particularly involving climate along with plant and animal life. I’ve been photographing everything that blooms to keep an easy to track visual record.

I’m trying to create a welcoming habitat for birds, insects and small mammals, free of chemicals, with an abundance of food and protective foliage. I’m making a safe space in my small corner of the world. After a polar vortex last year clobbered many of my plants, I struggled to rejuvenate the nectar supply by replacing what I lost. So far, this winter has been relatively mild and I’m noticing early buds on plants that are happening too early. Some of my overwintering birds like juncos were here for a short while but have since vanished. There are flocks of robins that are a bit too early. In my years in my home, my safe planting zone has gone from “3” to “5.”

This past May, I was given a tropical container plant that bloomed and thrived for months. As fall approached, I figured it would die back. But it didn’t. Finally in November, I decided that anything that wanted to live that badly needed to come inside. It’s still alive, green and lush. Will it make it back to April? I have no idea. But adapting and evolving is necessary as we face new challenges.

So that’s today’s set of thoughts. I hope that they resonate out there. I’m going to make the most of my time on this planet, tiny mote of life that I am. And I’m going to keep my mind focused on how much there is to work for that’s still alive and beautiful.

The Brief Retirement – Chapter 8 – Be 278

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 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, 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…

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 freshly made and topped with the treats of your choice as you watch. Driving home was long but 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 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 begin 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.