The Layers

EFDDB421-5A14-467A-82F0-2444D61F2E80When I traveled to The Badlands almost a decade ago, I stood fascinated before the striated rocky hills, aware that each colored line, piled atop one another, was packed with millions of years of history. Oceans, forests, animals and insects were reduced to slivers of their former selves, weathered by age and time. When I’m out in new places I consistently look for rocks with those telltale stripes and their hidden secrets of former lives.

Those beautiful otherworldly landscapes came to mind recently as I’ve been probing my own layers. My layers are internal, unseen. But I’ve learned through experience that those layers exist, holding secrets and mysteries that I’ve concealed from myself. Much of what’s hidden has been done unconsciously. I think that all people paper over parts of their lives. Some of that happens because we simply can’t hold everything that’s happened to us in a constant state of awareness. Too much information, too much to handle all at once. But some of these layers seem to be a reflexive survival skill that helps us manage what’s often too hard to hold in our heads. Pain, stress, panic, despair. Those of us lucky enough to not be overwhelmed by the past, to stay present in real time, walk forward every day and remain functional. I’m one of those people. But I needed to start poking around in my layers so I could accomplish what I want to do. And I must say, messing around in what’s been pushed down by newer layers has been surprising and even unnerving.

Background: Merkel cell carcinoma (MCC) is a rare, aggressive skin cancer. Merkel cell carcinoma (MCC) is a rare disease as there are only approximately 1500 new cases annually in the United States, according the American Cancer Society.

I’ve been wanting to write a book about what it’s like to live through your partner being diagnosed with an orphan cancer, a cancer so rare that there isn’t much money or research directed at its treatment. I want to share our experience as spouses, as individuals, as patient and caregiver, because I think that people out there will be able to find some help and relief in learning about our journey. I think my direct style and my willingness to say what many people won’t, might benefit those going through the impossible range of thoughts and feelings that accompany the shocking transition from what was an average daily life to sudden chaos and ultimately, death.F1DC097F-EB6E-4AF2-BD58-C90CC43DDF7B

So far, I have a dedication, an introduction and a first chapter. But it’s been a confusing and rough slog, with the book going off in unexpected directions. I need to pause and reflect on what’s happening here. This isn’t a novel in which characters take on a life of their own, leading the author on a trip of discovery. This book is factual. I saved all of Michael’s medical records. I have all my journals which describe what happened to us. But I got stuck.13B9FA9D-C2F8-4766-AA7A-87FCC6CB53EE

Writing is a consistent part of my life. I have journals that go back 55 years. I can read myself growing from a child through my teens to early womanhood, adult life and my present. I always wanted to write a book but never dreamed that this story would be my topic. But life has other plans. I thought that I would start writing and refer to my carefully ordered notes which are chronological. But when I tried to start reviewing the material that marked the beginning of this trip, I backed away almost immediately. Although I remember in great detail how we learned about and began to deal with Michael’s cancer, I was too raw to look at anything that wasn’t objective. My entries about how I felt and how I perceived Michael’s feelings and my children’s feelings were beyond my ability to cope. That was several months ago. Instead of writing the book, I’ve been writing this blog, writing letters to Michael and writing more journal entries about my current life.

Some time has passed.  I decided I was ready to have another go at reading everything that happened since 2012. What stunning revelations. I recall that the morning Michael died, I texted his oncologist to let her know he was gone. After only about twenty minutes, she called to extend her condolences. But she also gave me a lecture about how in the next six months to a year, I was going to be at the highest risk for my own  death than I’d ever been in my life. She strictly instructed me to get past the funeral arrangements and then do nothing but sleep, eat and exercise for the foreseeable future. She’d seen me in my relentless advocacy for Michael, staying at the hospital with him for 32 days and nights, never going home, and endlessly tending to his needs on all levels. I was with him round the clock for months with little downtime or respite from what was happening to him, to us. And I wanted it that way. I’m a planner by nature, an anticipator. I’m always down the road, trying to imagine whatever might be needed, trying to avoid unnecessary problems. Most importantly, I’d learned long ago that I didn’t want to live with regrets, wondering if there was something I might’ve done that could’ve prevented something dreadful from happening. I knew what I was doing at the time. But I had no inkling what the magnitude of taking on Michael’s disease really was for me. It simply needed to happen.

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Since he’s been gone, I’ve been grieving, as is natural. In my mind, I’ve gone back to the 40 years we shared before we were struck by Merkel cell carcinoma. I hunger for the normal years when we worried about our kids, money, jobs, family problems. I remember how much fun we had and how we loved being with each other. The puzzle pieces that fit perfectly, the way we sank into each other’s comfort. And I remember how much we battled each other, we two opinionated characters who could quibble about anything. That’s the life I’ve been inhabiting since last May, after he died.

So it was shocking to me when I started reading the almost daily entries in my journals. The weeping. The arguing. The despair. The struggles about him not wanting to eat while I forcefully pushed him to keep at it. My moving forward at my usual breakneck pace while Michael edged slowly on, annoyed at my speed and resentful of me imposing my style on his. The desperate clutching of each other’s bodies as we tried to hang on to every second of life together. The years’ worth of trips that we squeezed into the moments when he was healthy enough to travel, trying to live the most compressed retirement we could grab before the cancer caught him again. And again. We tried hard to keep life as normal as we could with our kids and grandchildren. We pared down our social life so we could all be together as much as possible. On and on we went for over 5 years on the wild rhythms of life and death.

As I read, I remembered it all. But I’ve tried to seal off how awfully hard it really was, how debilitated I became as time passed and we both eroded from the strain. I read an entry in which my daughter called me a cockroach, that creature which has survived no matter what had happened to stomp it out. And I thought, is that really me? Is that how I was built, to crawl through fire and ash and emerge, battered but somehow intact on the other side?

As hard as being without my great love is, I am after all, still here. I didn’t die, like Michael’s doctor told me I might. I know I’m not the same person as I was before Merkel cell became part of my world. As many other events necessitated, I’ve altered and adapted to what the world has put in front of me. But in this brief period of time since Michael’s death, I didn’t know that I would rapidly build new layers inside of me, that softened the harsh reality of what we lived through, particularly during his final months. My joy in life is subdued. I still lean heavily on the bond we shared that grew and grew for our life together and flourished so much that it’s still alive inside me. Perhaps it’s the primary reason that I felt stunned at the distance I’ve put between me now and me then. That powerful relationship has trumped the agony of our cancer adventure. I find that what came before is the space I’ve been occupying and has changed my perception of the dark time.

A new layer added to the myriad levels of me. I’m grateful I have the documentary evidence to analyze myself, the way geologists study the physical world. Because my interior is as laden with complexity as those hills which have intrigued me. More territory to explore. Time to proceed to my next chapter.

By The Numbers

B18BC5C9-4231-443B-B526-917EA96B54DCThe other day, I got a call from a dear friend who was feeling broken hearted. She’d heard that a teenaged boy who’d spent his whole life struggling with neuroblastoma had finally succumbed to his cancer. This friend’s granddaughter had been diagnosed several years ago with an uncommon cancer, most frequently diagnosed in adult males. She was treated and has been in remission for several years. She, and the boy who died, had crossed paths through a community of parents whose children have life threatening illnesses. The families help support each other and are active in trying to help their kids experience enriched lives as they proceed through their grim treatments. Losing one child is a loss for all and a reminder of the fragility of life for everyone in the support group. The potential for living the same future death is never far from anyone’s minds.

114DB89D-AF47-49D0-AA0F-C34078B43BEEMy friend called me because she knows I’m experienced with the ups and downs of being with a loved one whose cancer ebbed and flowed, living from scan to scan, wondering always when the next doctor’s appointment would bring good news or bad. Living in a state of hyper-awareness is hard to describe. The edges of life have an eerie textural glow, as if they’re old celluloid movies which look unusually bright, but could suddenly ripple away and burn, erasing all images. No fabulous technicians are working in an archive to restore and preserve the one and only copy of the person you love.

0A9C8AED-320C-4D6F-A3F4-8945667FE301I tried to console her with my limited means of coping. I am not religious. I don’t believe in an afterlife, a heaven, or a better place than the world I occupy. I’ve always thought that a belief system like that would be an easier option than mine, one that could make the empty spaces feel less lonely. But I don’t. That route doesn’t work for me. I have lots of questions about what happens to the energy of a person who dies. What happens to their wavelengths that bounce into space, wavelengths that are now considered to be scientific realities? What’s a parallel universe? Why do people feel they’ve been visited by those who are no longer here? I imagine I will ponder those ideas for as long as I can think. I have no notion what answers may be discovered in what remains of my own life. These are my private, personal intellectual meanderings.  But my practical side is where I turn when confronted by the sadness of a friend who mourns a dead child and who fears for her own granddaughter and what may come down the road. I’ve figured out some approaches to the fear and the sadness. So I share what works for me.8D3A2E90-656F-42BD-8036-042F11590682

When I realized the limitations of what I could know in the future and what I could do beyond the present, I made some adjustments that help me. I know I can’t go back and have a redo of anything.I need to be alive in the moment, as often as is humanly possible. I can’t stop the inevitability of death, for myself, for anyone. So while I am in the now, I try to squeeze the absolute best experience that I can make out of even the smallest daily events. I told my friend that whatever she can give her granddaughter to enrich her current life is the best that she can do for her. That can range from sharing a sweet treat to a hug to a special  trip that will make unforgettable memories. Do it today. And don’t waste time in anticipatory grief which is a monster.

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When my husband was well, we squeezed little bits of magic into every day and night. Although nothing can fill the space left by his absence, I am comforted to know that while he was here, our awareness of the significance of “now” was a daily imperative. And there is great comfort in knowing that you did your very best at living under the constant presence of death.

Situations like the one of the little boy always remind me that my life isn’t tragic. Rather, it’s what average people can expect at some point in time. Tragedies are what happen to little kids who haven’t had the opportunity to experience the richness of life. Tragedies are the people who live in the wrong place, caught between political power struggles that can snuff them out in an instant. Tragedies are having to live starving, physically, emotionally and intellectually, accidents of genetics or circumstance. As I frequently remind myself, and anyone I can get to hear me, perspective is everything. That leads me to my current processing.

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When I was growing up, I didn’t like math much. After elementary school, algebra, geometry, trigonometry and beyond were not high on my list of pleasures. But oddly enough, my adult work life took me to a place where every day, I conquered what were the daunting mysteries that befuddled and frustrated me as a kid. And now, I find living by the numbers to be my most helpful skill in guiding myself through the challenges of my unanticipated widowhood and grief. So here they are.

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1) Today is the 406th day since Michael’s death. Somehow I’ve lived all those days when I wasn’t sure I could survive one. I still mostly feel and look like me, despite missing him constantly. I didn’t know I had 406 days left in me.

2) I started writing Michael letters about three weeks after he died. He was my best friend and confidante. Nothing felt real until I shared it with him. To date, I’ve written him 160 letters. For me, they’ve been marvelously cathartic. Some are whiny, some informative, some sexy, some pathetic and some angry. I highly recommend writing letters as a way of remembering your journey. At the end of my day, I feel relieved to pour my thoughts toward the person I most trusted in this world. I still wish he was here. But the notion of him with me is sustaining.

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3) I’ve also written 149 personal journal entries. I’ve been writing in journals all my life so this is nothing new. But they’ll provide an invaluable resource for my children and grandchildren after I’m gone. I’m hoping that I’m answering all the questions they’ll have about the past. Personally,  I don’t have those resources and have been left wondering about many parts of my family history for years. My mom and dad told me never to put anything in writing, always worried that somebody would get the goods on them and bring them harm. I blew off that idea long ago. My parents clearly weren’t historians.

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4) Since last June, I’ve gone swimming 326 times. I feel like I’ve gotten physically stronger. I was pretty spent after my years of caregiving. It’s good to know that you can still make a kind of comeback after being driven into the ground at an older age. After my knee surgery who knows how I’ll be?

5) I’ll admit that I don’t have an accurate count of how many hours I’ve spent being with or talking with my children and grandchildren. But I can say that even when I’m exhausted and feeling like a hermit, I pull myself out of the fatigue and do it anyway. Time is moving fast and I can’t ever get back what’s behind me. Do it now. FD40D9C0-F370-45A8-8B04-C21C82C8CF8D

6) I’ve played 9839 games of Words With Friends. I’ve tied in 24, lost 1202 and won the rest. I’m trying to keep my brain active. And I really love words.

7) My working hours in my garden average about 15 a week. I used to be able to crank out 8 hour days. Now my knees can’t keep up with my desire. But if I’m not working,  I sit in the garden and watch the sky, the insects and the animals who share my habitat. Those are some of my favorite hours.

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8) I read a book a minimum of one hour a day and usually more than that. For a long time during Michael’s illness, I had trouble concentrating on anything but articles and short blurbs. Books are a necessary component of my days. I’ve read 37 since Michael died. I’m working on upping that number. Reading the impossible news with astonishment every day has cut into my book time. Another challenge to becoming balanced.

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9) I listen to music at least 2 hours a day in a variety of formats. Music nourishes my soul. I starve without it.

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10) I’ve been to 32 movies in the theater since Michael died. I’m not sure how many I’ve watched at home. One day I’m going to try to make a list of all the movies I’ve seen in my life. I’m not sure I’ll have enough time to accomplish that.

11) I’ve been to two political demonstrations in the past year. I donate to two of my favorite organizations monthly and have made individual donations to worthy causes 13 times. I believe in staying politically active and as engaged as possible. I can’t get rolled over by the sideshow that is our current state of affairs. Doing my little piece is as necessary as breathing.

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So those are some of the things I’ve kept track of since my world changed forever. Maybe it’s a bit compulsive. Maybe it’s weird. I don’t really care. I’m just finding my way through all the shocks I took in a six year period of time. WhenI my brother, my mother and my husband died. Plus I experienced an estrangement from my sister and the death of two dogs. I’m doing my best to manage. Feels like it was a lot. But I know that other people have gone through worse and infinitely more horrifying times.

The counting helps me. More importantly, what I’m counting helps me. I hope my efforts give someone else ideas about handling their burdens. One, two, three….

Starting With Rage

Throughout my life with Michael, my rage was a frequent topic of conversation between us. He worried about my health. He also couldn’t understand how rage was my first line response to virtually any situation that I thought was unjust or morally reprehensible. Me neither. When I read an article or see a news story that rubs me the wrong way, I’m immediately furious. I can’t stand anything that smacks of unfair. And I start expressing myself right away, often with inflammatory statements or snide jabs. The frustration is unbearable for me. I’ve been living angry for as long as I can remember. Here we are, he wearing his history hat, standing in front of one of the icons of this country.97DD26D1-8D19-4863-8BAF-741558A4B8A1

When he was alive, things were easier. He oozed some inexplicable sedative effect through his skin and when I was next to him, I eventually was able to defuse my all-consuming heat and function in a more reasonable frame of mind. But he’s not here now. So I have to find other ways to stop myself from spontaneously combusting.A386E783-0492-49CC-8B4B-AC375E9BF589

I’ve visited this topic before on this site. I was devastated by Donald Trump’s election. Although not a devoted Hilary follower, I was looking forward to experiencing life with the first woman president. The future under her administration looked reasonable, if not the most perfect fit for some of my fringe views. Certainly she looked great compared to the ringmaster buffoonery of her opponent.4CAA0F64-32E4-463D-B8CE-ADCA0B3F7F6D

My family all watched the election returns together. As it became clear that what seemed impossible was going to become reality, our moods ranged from disbelief to despair. There was crying and wailing and attempts to maintain calm by Michael and me, who remembered living through other seemingly unsurvivable administrations. We were distraught too. And we had no idea that within weeks we’d be facing the end of Michael’s survival luck. Death was closing in on him. I’ve wondered many times if we would all have been able to manage our grief any better without the overarching dark cloud of Trump’s manic, unstable and over the top domination of the news cycle during those months. While I remained Michael’s medical advocate, as we spent those 32 days in the hospital with him undergoing barbaric last ditch treatment, when he was confused because of the cancer advancing in his brain, my children and I couldn’t take our eyes off the train wreck of the presidency. The young nurses and techs who got close to us, slipped into our room after their shifts ended,  to discuss their disbelief in the seemingly endless flow of random decisions, crooked Cabinet members and tromping on widely held social values under the auspices of “making America great again.”5018BEC5-AD72-45C9-914D-EA397B0AB085

As I thought back on all my historical knowledge, all I heard were the echoes of fascist voices of the past. And watching those white supremacist haters come into the light was truly terrifying, although not surprising to me. There have always been groups meeting in the shadows and committing hate crimes. Trump’s presidency empowered their emergence into the light.FC450D5C-792E-4C73-A992-CD3FCF7DEECF

And while I struggled to give Michael his dying wishes, to have one last good day, to end his life in our home, I was stewing away with anger at the injustice of seemingly everything, watching Trump rapidly dismantling as many of Obama’s signature accomplishments as he could. Worrying constantly about the potential for a nuclear disaster, the denial of climate change and the rolling back of protections for clean air and water. The shocking racist attitudes and the incendiary commentary. I remember watching him say, look at my African-American over there during some speech and thinking, we’re in a time tunnel heading backwards at breakneck speed. Young black men are unsafe on our streets. An absolute horror. Lynching in the modern age.  My list of furies could go on for pages but that’s not where I want to go with this piece.3D89C3C5-FB37-4FFE-BE05-E81E1BCE71D5I know what I believe and I can  back it up with historical reference. Today, I pondered the calamitous recent decisions of the sitting Supreme Court and what they will potentially do, especially if the smug hypocrite Mitch McConnell, who blocked an Obama appointee with glee, turns on his own argument and pushes a candidate through before the midterms.  I went to my bedroom, my safe place where Michael’s presence feels particularly strong. I started scanning my bookshelves where the ones I love best remain, even after purging our library as I try to go minimalist. I found my beliefs there. The sham being perpetrated on Trump followers does not change what is real.8C6F9547-340F-4C6D-AAF9-ACF4E7E75915

1) Trump is a racist. He is advocating returning to a time when whites dominated people of color. His attitude toward Hispanic people and Muslim people is appalling. The courts are curtailing voting rights, letting gerrymandering fall where it may and making it impossible for fair representation.  He is reflective of the thieves who came to this country and wrested it from Native Americans. The white people who came here committed genocide and stole land. The survivors of that devastation were robbed of their culture and forced to be trained as knockoffs of their conquerors. Read a book. I think of the weary Chief Joseph of the Nez Perce and share a few of his thoughts below.

“We did not know there were other people besides the Indian until about one hundred winters ago, when some men with white faces came to our country.”

Chief Joseph

2) As a country, we are moving toward oligarchy. The enormous economic gap between the 1% and everyone else grows larger every day. Trump admires and meets with dictators. He declares himself the only person who can make America great again. He is anti-labor and pro-ownership. That attitude is blatantly clear. Just listen to his speeches about what NFL owners should do to their players. Read some labor history.  Yeah, I know all about the bad stuff associated with some unions. But you don’t scrap what made livable conditions for millions of people, unionists who bled for a reasonable work day, a fair wage and to not be owned by their company. Read about it. And think.

3) What about women’s struggles? Second class citizens since this country was conceived. Already there have been hard fought battles for fair pay, equal  treatment under the law and control over their own bodies. And still, the struggle continues. Consider the #metoo movement. Still necessary in the 21st century. With an even more conservative Supreme Court, women’s rights, still far from just, are again in the sights of the patriarchy which as Ruth Bader Ginsburg stated, has kept its foot on women’s necks. My youth was spent watching friends who chose to have abortions leave this country or take terrible risks trying to get one here. I myself would never have wanted an abortion for a baby conceived while in a relationship. But had I been assaulted or alone, I might have thought differently. No matter what the circumstances, I can’t imagine trying to interfere with a woman’s right to choose. Now Roe v. Wade can again be in the crosshairs of those who believe they can dictate individual rights based on their own beliefs. The founders’ intent was to create a society of tolerance. Now, if you’re not in a certain religious or political club,  you run the risk of having your beliefs rammed down your throat. I can only imagine what those people who wrote the constitution would think of how it’s been twisted for the convenience of a privileged minority. And how do I even begin to imagine the fragility of the LGBTQ community which daily stares down prejudice and hatred?E150DD41-9266-4AF0-AE53-600A2789430A

I think it’s everyone’s responsibility to speak out about what’s going on in this dystopian new culture in which more government employees have been fired, charged with crimes and cheated the American public in what is basically the blink of an eye. I share a quote from George Washington which still rings true today. 8BDAB139-A860-46F6-AFA7-2F29C5FFB443.jpeg

I intend to stay vocal and loud. I intend to share my views with the people who ostensibly represent my interests in Washington. I will sign petitions, donate money to worthy organizations and march when my knees can manage it. I will not be quiet because times feel desperate. These times require people to dig deep and not let themselves be cowed by all the media noise. I don’t choose to lose my personal power and strength to this crowd of bullies. I watched my husband have his life stolen by cancer. He tried to thwart that bully every step of the way for over five years. Certainly, when I can see what’s right in front of me, I would be a coward to just let it all happen while I stand mute, watching these dreadful changes which will affect my children and grandchildren’s lives. Nope. I refuse. If you don’t like what I have to stay, exercise your right and don’t read my posts. I’m in charge of this space.

 

 

Relief

29C26B2F-B5DF-4211-8B78-EB07CFA2851AEvery now and then, the way I look surprises me. I’ll glance at my hair and think, oh that’s right, I no longer color my hair. I did it for a long time and drove everyone around me crazy,  talking about whether I should continue to do it or not. I can’t remember when I began to feel that being grey was something to be avoided. My hair was changing, age-appropriately. I wasn’t particularly concerned about it. But I colored it anyway. For years, I paid an absurd amount of money to have it done and when that annoyed me, I dyed it myself. I dreaded doing it. What a pain in the neck. I was so relieved when I stopped it. I felt more like what I think about myself as a person. Nonetheless, I’m still taken aback on occasion when I see my salt and pepper topping, wondering how quickly it seemed to happen.

0D979964-A1AE-4BF5-BBE2-D0F79E41A09EThen there’s my skin. Genetics have to play a significant role in how wrinkly you become. I spent and still spend a lot of time outside in the sun, swimming, gardening and I spent years doing dog-walking. But my face remains pretty smooth. I’m oily there. The age shows in my arms which are developing that crepey appearance, fragile and dry. And my neck is becoming saggy and foldy. Hah! There’s an app for that.

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THE NECK, CHIN & JAWLINE SCULPTING WAND.

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Lots of apps, really, if you have the money and the inclination. In our youth-oriented culture, there’s no stone unturned in developing injections, surgeries, serums and creams that can turn back your clock and have you looking decades younger than you really are. And in a culture that places so much emphasis on looks,  it’s not a surprise that the multi-billion dollar anti-aging industry is booming away with boomers like me. There are supplements you can buy which promise to keep your brain elastic and younger than it actually is, in addition to new medical research which ostensibly slows the aging process. If you starve yourself, you can hold off the clock. I know I’m just skimming over what’s on the market or what may soon be out there. The thing is, I don’t care about any of it. I’m not saying that I deliberately want to look old or pitiful or any other negative, unacceptable ways. I’ve just learned to let go of the worries about it. I don’t care about how people think I look. More importantly, I don’t care if I’m getting older. It’s the natural order. My husband would have given anything to live and age beside me. Cancer squashed that desire. But I’m here and I feel incredibly relieved to be free of the societal burden that hangs  over our self esteem. Things are tough enough without worrying about appearances. How about thinking about what’s inside instead of what’s outside?

 

I’ve been aging since I was born. Just like everyone else. When you’re little, there’s no thought given to the process. What happens just is. After awhile, as you develop consciousness, you become aware that as you grow there are milestones to reach.

I remember when my son learned to tie his shoes. He stood up and said, there. Now I can tie, zip, button and snap. I’m all done. Such a wonderfully simple view of growing up.

But complications emerge. So much to learn, so much out of reach. You can learn to ride a bike, to swim, make a sandwich. Get a driver’s license. Register to vote. As the independence desires grow and you tick these goals off your list, restlessness and impatience become issues. In our house we talked a lot about learning the rewards of delayed gratification. And we talked about not rushing,  because childhood goes fast and is actually the shortest part of your life. Truly the only time when if you’re fortunate, you can be carefree. Because independence and freedom also carry responsibilities which can begin to weigh you down, not long after you arrive in adult life.  Once you recognize the gifts of being older, you spend all your time striving to acquire those gifts. You want to get to the place where you can have a car, buy a drink legitimately, have sex, make your own decisions, free from your family’s rules and imposed structures. You can travel wherever you want if you have the time and money. You can be your own person.

These are the glory years, that is if you’re lucky enough to have good health and the means to enjoy them at your disposal. But those years don’t seem to last long. No sooner do you arrive in that long-awaited spot when you are suddenly nostalgic for your carefree youth. What a surprising conundrum. Suddenly you find yourself feeling like time is going too quickly and you want to slam on your brakes and make it slow down. You start to feel like you’re getting old. You’re not as energetic or fast as you were when you were in your teens or twenties. You don’t bounce back as quickly when you stretch yourself beyond your limits. Worries become part of your daily life. Bodies begin to change. Although men have more muscle mass than women, both sexes reach their physical peak as young adults or anywhere from their late 20’s to early 30’s.

So on top of all that, we add the insecurities of having the wrong exterior. We’re not beautiful enough. Not thin enough. Not sexy enough. Too little hair. Too freaking old. Shoved to the margins of life as youth surges past you. Now how in the hell did that happen? I remember times when I wanted to hide from the world. Bad complexion. Bad haircuts. Too much fat. No shorts allowed. Wrong nose. No outdoor work when someone might see you at the wrong angle. Ugh. What a waste of energy and time.

 

I think aging is a gift. The kind of gift that’s sort of like a whoopee cushion – a surprise, a sly nasty poke, but a gift nonetheless. For someone like me who experienced many deaths that happened too early in life, I’ve been trying to find the way to appreciate the fact that I’m still here, while struggling with the newfound deficits of getting older.891D2B38-D221-4C2F-93EC-C87C3D8F261C

Knowing that we live in a youth-oriented culture isn’t rocket science. There is no amount of time in which I could imagine listing all the products, the potions, the miracles out there which are all aimed at the notion that aging can be avoided, averted, delayed or perhaps stopped altogether. With 3D printing available, medical advances, cryogenics, and some hard work, you can actually believe that you can maintain your youth longer than has ever been possible. The quest for the fountain of youth goes back a long way and is considered a worthy goal. Maybe it is. In my lifetime, not so much.

Fountain of Youth – Ancient GreeceA671FCCD-AF62-41A0-971F-63B73CED9BBF

The fact is that aging is living. You’re birthed and then immediately set to the task of growing older. If you’re lucky, that process is one of nurture. You’re fed, clothed, hugged, protected. People guide you and teach you new things constantly which will help you in your aging process. Evolving is a good thing. Except there seems to be a point when you go too far. For us lucky ones, who are born healthy, grow healthy, develop healthy,  there seems to be a place where subtly, that ever-changing process becomes more of a negative than a positive. For women, that seems particularly true. At some point, women age out of what is considered the most desirable pit stop on life’s journey. And from our earliest years, the message about becoming less than prime is very clear. What’s thrown in our faces are ways to cover up the aging process, before you’re relegated to the trash heap. F3AC94F5-DBE8-4DE6-9D87-DFDB230F5B9B

You become invisible in the culture unless you manage to foil the tricks played on you by the gift of growing older. I suppose there’s biology at work here. The most basic tenets of why we’re here is to reproduce. Once menopause shows up and estrogen takes a walk, the battle for youth becomes a steep climb up a seemingly endless rugged mountain of changes that remind you that your best days are behind you. That is, if you let the cultural norms dictate what you do with this new phase of life.

 

Remember all that grows finer with age? Wine, cheese, whiskey? Trees, tortoises, bird songs? Love, devotion, sexual skills? Those count, don’t they? Well, so do our minds, our vocabularies, our insights. I’m still growing my intellectual firepower. I’m growing my feelings and trying to share them in a way that will impact the world. I don’t want to be on the junk heap and I don’t intend to be pushed there. One day I may fall victim to the ravages of senility or Alzheimer’s. But not now. As long as I’m still breathing I want to be a multi-dimensional person. I want to learn something new every day. I want to appreciate what is beautiful. I want to speak out about politics and immorality. I want to hang out with young people. I want to push for change. And I want to lend a hand or a shoulder or an ear to someone who needs a break. So who cares about my hair color or my wrinkles or my aging past reproduction? The most valuable parts of me are right here, right now. Decades have gone into growing them. A lot of effort, a lot of coping and a lot of strength I didn’t know was in me.EC5DB53E-9A5C-4B59-9DF1-26EF338A50EE.jpeg

I feel relieved. So much time wasted on what means so little. I’ve sat at three deathbeds, of the people who meant everything to me. My parents, who brought me into this world, and my beloved husband who walked through forty five years with me. None of them gave any thought to the superficial aspects of this world as their lives ebbed away. I don’t intend to waste one second of the time left to me. If anyone who reads this can let go of at least a bit of self-judgment over issues that don’t matter, this will have been worth my writing it.

 

 

Stunned : The Sneak Attack

F7A6DA44-FC95-44D2-B2D9-4548BD64EBC8So you’re going along, leading your new life, adapting to the fact that your partner of 45 years died and has been gone for over a year. And you’re really working your tail off at building positive experiences and living the way you want and facing reality like a totally evolved adult. And then, wham! Without even the tiniest hint, you are instantly stunned, bowled over by the fact that your person is never coming back, that you will never lay eyes or hands or anything else on your lover, your best friend. Now how the hell does that happen?02CEF7AF-D36C-467A-BC3D-CA77AE540A77

I get it when you suddenly hear a song that was meaningful in your relationship or you’re looking at photos that bring back memories. Then the progression of remembering turns to wondering why and what if, and there’s some kind of logic there. Something you can understand. But this minding your own business, thinking about what you have to do today thing, when there’s no direct stimulus that would reasonably help explain the sudden shock and desolation is pretty unnerving. And unfair, I might add. Ambushed. What a dreadful feeling.

I’m always trying to face things head on-that’s my style. The first thing that popped into my head when this most recent hammer dropped? A few quotes from one of my favorite books. When I read it years ago, I had no idea how apt these two passages would be for me at this stage of my life. 79CF08FC-802F-4930-96E6-D07511B17509

“..The girl raised her eyes to see who was passing by the window, and that casual glance was the beginning of a cataclysm of love that still had not ended half a century later.”

“She was a ghost in a strange house that overnight had become immense and solitary and through which she wandered without purpose, asking herself in anguish which one of them was deader: the man who had died or the woman he had left behind.”

Although the words move me and reflect me, for now, they won’t do for providing solace and a path forward. Instead, I find myself pursuing a different direction. I’m thinking about the phrase “taking the waters,” and how that applies to me at this point in time.AEE72E81-3510-4819-9F9F-2834E6C7D078

Taking the waters is an ancient concept, positing that immersing oneself in mineral springs, pools and the like would provide healing and rejuvenation. The practice and reference can be found in literature from multiple cultures and eras. For me, water has been a go-to place since I was a child. And now, I’m looking back to where that attraction began and contemplating that comforting reliable space. 

28B5CAFE-276C-48CF-851D-87BC81BD9CCBI discovered swimming when my parents moved back to Chicago from Sioux City when I was seven. Lake Michigan was inexpensive entertainment. Our spot was Rainbow Beach which was relatively close to our apartment. We carted lawn chairs and blankets to the grassy area west of the beach. No one in my family was much interested in the water but me. My mom wore a bathing suit but my dad sat on a chair wearing long pants and sometimes, even a lightweight sport coat. They’d both grown up in the city on the edge of this gorgeous lake but were too busy scrabbling to live to spend any time near the water. Back in those more innocent days, a kid could go alone from the park down to the water and that’s what I did. I stood watching the swimmers carefully and copied their movements as best I could. What a glorious feeling. The lake was really cold but I didn’t care. I’d stay in the water until I pruned and my lips turned blue, excited when my uncertain movements took me from one spot to another. I was hooked immediately. I didn’t care about the stinky, rotting alewives that lay along the shore. Whatever happened to them wasn’t going to happen to me. Most of my early water time happened in that lake. Occasionally, my parents took us on an excursion to a city pool. I remember going off the high dive at the Wicker Park pool, an almost unimaginable feat when I, whose fear of heights is now legendary, would do almost anything to enter the water.

In high school, swimming was a component of PE class. I remember we wore swimsuits made of a material that felt  rough, that the suits were baggy,  and that you got either a red or blue one, depending on your skill level. I didn’t love our pool or the class. What I did love at that time was summer, when a nearby motel allowed people to pay a dollar a day to spend unlimited hours at their outdoor pool. Before I had a summer job, I split my time between The Thunderbird Motel and Rainbow Beach. My skin was bronzed and my hair turned auburn.B3997346-691F-4378-A3A7-B3400CB44F47In those formative years, I just loved what I loved. As I evolved from child to young adult, I started a deeper thought process,  probing inside myself, trying to understand what I felt and what I wanted. I was seventeen when I went to college. I had no inkling then that I would spend the rest of my life in this university town, a place plopped in the middle of corn and soybean fields where the only body of water was a skimpy little creek filled with widely varying and questionable items. I’d left my lake behind. But in time, I found the pools, first the ones on campus and then, the city pool, the one destined to become the pool of my life. The water continued to be a source of peace and lightness for me. As I swam along, slowly and steadily in my classic tortoise style, my hurt, my rage, my confusion and even my positive feelings went quiet. I can scarcely describe how unusual the internal drifting stillness felt, so in contrast to the relentless focus which is my dominant mental state. I began to learn that my water time was my meditation time, a state of mind that was more organic to me than I imagined.

But I am getting ahead of myself. At twenty, I met my husband, a water person like me. We roamed together, looking for swimming spots. We skinny dipped in gravel pits and farm retaining ponds. We found lakes a few hours from home and emerged from them with green slime caught in our toes. As we moved further into our life, our travels expanded and there were hotel pools, more lakes and finally oceans.

We glided in the waves of the Atlantic and Pacific. We spent countless hours in the Gulf of Mexico and swam with the wondrous creatures of the turquoise Caribbean. We carried our lovemaking into these waters, surreptitiously joining with each other under the surface. We managed a few pools as well. These were rapturous moments that sway in my memory. Unforgettable.

When we joined old friends and their families in a communal camp setting for several years, I swam the lake while Michael helped the kids with the water sports. I don’t believe I ever rode the jet skis we rented. Occasionally, I rode in the boat to spot the people who were water skiing or tubing. I canoed once.  And I sat or stood on the dock to help the little ones learn to fish or skip stones. But for me those sweet summer vacations were about the swimming, usually by myself.

For many years when winter break began, we took our kids to Starved Rock State Park, a place for hiking and watching bald eagles, if you were lucky. For me the lodge there had the critical main attraction, a large indoor pool, a hot tub and a sauna, completely glassed in so that while you swam, you could see nature scant yards away. One amazing December day, we arrived with a blizzard minutes behind us and as I swam lap after lap, I watched the snow fall steadily, piling up in great white heaps while the warmth of the water embraced me. These were trips we shared with our children, telling stories, breaking news, relaxing and tightening the bonds of our little family unit. As they grew older, sometimes we went alone. But we also expanded our crew to include girlfriends, and eventually our son-in-law and grandchildren. We went there in the midst of Michael’s chemotherapy. And it was the last healthy trip he had the month before his cancer ran amok. I’m not sure I’ll ever be able to go back there. I think I prefer to have the memories from those times remain encapsulated. I often wondered why I was the only person in the pool in the morning, up and back, up and back, not understanding why people hadn’t figured out this lovely feeling they could have so easily. I was lucky. That book is closed.

But the pool of my life is none of what I’ve described. Our local pool was called Crystal Lake. In my mid-twenties having a car and a job allowed for mobility. Crystal Lake was a lovely city park with mature trees, playgrounds, the lake, bridges and pavilions. The pool was further north and built in a depression in the land. Surrounded by trees and prairie plants, with street sounds muffled by the landscape, it was easy to feel that you were far from an urban area. No hustle bustle here. The pool was an oasis. I started attending with a couple of women friends who worked with me. I swam the most, my friends doing a few laps  while I stayed in the water. Eventually, Michael joined us there periodically. He was a beautiful swimmer but lazy – he’d do a few lengths and then snooze on a lounge chair. When he got too warm, he’d rejoin me. What a treat to hold each other in the midst of a work day. The good life. Every summer I looked forward to the Memorial Day opening. Over time, my companions came and went. I kept going, every day unless the skies opened and lightning interfered. I swam through my first pregnancy in that pool. I was so enormous that the lifeguards were terrified I’d go into labor on their watch. They had a baby betting thing going, trying to score cash off my giant belly. That didn’t happen. But my babies did arrive eventually and they learned to swim at Crystal Lake Pool. When they went to day camp, they swam there a few times a week. Some of my friends moved away and new ones joined me. Michael, too, along with my sister and my mother, who sat on the side, dangling her feet in the cool water. We had family picnics there after work on hot evenings. I can see us sitting under one of the umbrella tables, plum juice dripping down the kids’ chins, going from the baby pool to the big pool, my shoulders sore from catching my little jumpers who were never bored after doing the same activity a hundred times. I remember when I made my daughter take a stroke clinic which she hated but did anyway, developing into a talented swimmer. Watching her go back and forth was almost as much fun as doing it myself. Eventually  I joined the park district citizens’ advisory board so I could stick my two cents into any conversations about aquatics. Our parks director was more about parks than water. I wanted to advocate for investing in a community pool. Finally, the time came when the pool malfunctioned and it was time to tear it out, to start over with a new type of aquatic center which was more modern, with the bells and whistles that would attract more patrons and perhaps, break even financially. I was shell shocked even though I knew it was coming. Thirty years of life had gone by and that pool was part of my peace and joy. I mourned.

In time, I realized that fitness was a year round necessity and finally joined the indoor aquatic center so I could swim year-round. I acclimated because that’s what you do in order to survive and in time, was grateful to have a facility that I could use regularly. But my heart yearned for that feeling of swimming outside and escaping all the noise, both internal and external.

When the new outdoor aquatic center finally opened after almost 3 years, I went to check it out. I felt overwhelmed and alienated by all the noisy buckets, bells and slides meant to attract families and be more current than the old fashioned pool design I’d known for so long. I decided that the indoor pool would do and that except for spending time at the new Crystal Lake with my grandchildren, I’d keep my distance from this zooey place. But circumstances change. When Michael’s cancer came roaring to life last year, I stopped swimming in January and stayed by his side until his death in late May. He needed me and I needed to know that I’d done every last thing I could for him. I also wanted every single second that was left to us. When he died, I was whatever is beyond fatigue and exhaustion. After a few weeks. I realized that I needed to start moving before my body turned to total mush. I hadn’t realized how much muscle tone I lost during those months. Although I was always moving around and sleeping so little, the lack of regular exercise had caused all round atrophy. My doctor said that for every week of exercise that I’d missed, I’d need three weeks to begin to recover my strength. Suddenly I was looking at a year of weakness, something I’d never considered. Adding to the dilemma was my overwhelming sadness and grief.

If I went to the indoor pool, all the people that knew about my life would be waiting with sympathy. I knew that instead of working out, I’d be spending my time trying not to cry most of the time. I decided to go back to the outdoor pool, hoping to swim in privacy, not having to talk with anyone. The first couple of times I arrived for lap swim were disastrous. Friends I hadn’t seen in a long while were there and they all knew about Michael. Everything I tried to avoid was happening anyway. In addition, I couldn’t believe how weak I felt-every stroke was an enormous effort. I finally decided that the safest thing to do was to swim in the middle of the afternoon, when the pool was filled with screaming kids and I could disappear into the chaos while seeing virtually no one I knew. I thought it was a bit humorous that for so many people who had children and grandkids, that being around them during pool hours was like doing hard time. After a few weeks, I did bump into some friends, but not often. More importantly, I grew stronger, physically, mentally and emotionally. By the time Labor Day weekend rolled around, traditionally the last days of the outdoor season, I felt strong enough to go back indoors and pick up where I’d left off before Michael got so sick. And that’s exactly what I did. Over the fall and winter months, I reinstated my routine and faithfully moved on with my recovery.

But as spring approached and summer loomed, I found myself thinking more and more about wanting to swim outdoors. Taking the waters came into my head. I remembered how great it was to backstroke, looking up at the sky and the clouds. Watching hawks, turkey vultures and herons sail overhead as they moved toward the lake and scanned the ground for food. Dragonflies hovered constantly and bees droned along, attracted by the beautiful flowers and landscaping designs that surround the deck area. My pool pass needed renewing and I opted for the outdoor pass in addition to the indoor one. I’ve been going for a few weeks now. And indeed, I’m taking the rejuvenating, healing waters. As I glide up and back, I’ve been astonished to find powerful visual memories emerging, unelicited, from deep down in my body. I see my children, my daughter in a one piece suit with a single ruffle, diving off the side into her dad’s arms. I see my son, toddling gingerly through the kiddie pool, his arms uplifted, making sure someone was always nearby to grab his hand. I see my friends, laughing, joking and gossiping as they lay on the chaises, lazily watching me move along. I am powerwalking with my adult daughter in the shallow end, my sister nearby. I am telling a work acquaintance to stop talking to me about business when I’m in my vacation mode.

And I see Michael everywhere. I can see him diving. Swimming a whole length underwater and popping up right next to me. I can see the way his hair parts after swimming the crawl. Him smiling at me as he watches me swim length after length. I can feel how he pulled me toward him and walked around the water with me, clasped together in one of our happiest places. And I can see how much he loved being able to be there with our kids and the little boys, an experience he feared he’d never have. I don’t feel sad. I feel embraced. Every vision has a light quality to it, a shimmery glow that makes me smile, that brings comfort. My whole life happened at this place. My youth,  my life partnership, my friends, my babies, my family. It looks different but it’s in the same physical place and how I feel while immersed is the same drifting meditative sensation that I’ve had while swimming, always. The sneak attacks will come again. There can be no doubt of those ambushes as my love for Michael remains so alive. But I’m going to take the waters, whenever I can. To carry me through until the next time.C1AE13CC-EC17-4AA4-A294-EF805853D238A62360BA-E69F-44A6-82DD-65184A5C82D14A9A9C22-2B80-4943-B05B-977FAE59ECBE

 

 

 

 

Birthday Boy

789C3D26-90D9-4CB0-8E79-6B0A6A1B046CWhen you stop to think about it, birthday celebrations are a bit odd. Although somewhere deep in our brains, the passage from our mothers into the outside world is probably recorded, we don’t have easy access to that memorable entrance. In fact, most of us remember little from the first few years of life. And yet it seems to me that our earliest years are deeply significant, combining whatever is hardwired into our DNA, with the effects of how we are treated by our parents or caregivers. My own children, now in their thirties, routinely exhibit behaviors that are virtually the same as the ones from their babyhood. We are always growing, even during infancy, and by the time we are about five, certain basic feelings are locked into us, whether we can recall how they got there or not.41EEC608-4465-4BE2-9EBC-C0DA6CA54AFE

Today is Michael’s birthday, the second one since his death. This day finishes off the long list of anniversaries that punctuated the month of May. Father’s Day will be more challenging for my kids than for me. But his birthdate resonates with me. As I remember the many birthdays we spent together, I find myself thinking more about the little boy who was formed before I showed up. And that little boy was always present throughout our adult life, on birthdays and all other days as we maneuvered our way through life and its multitude of challenges. 53EF1919-18AB-4954-916D-687FE3BE18AA

Michael’s parents were difficult people, hardly the types that were suited for nurturing children. They give credence to the concept of licensing couples before they reproduce. So much heartache could be avoided that way. But that isn’t likely to materialize any time soon. And for my sweet guy, he seemed like an alien, a mutant creature in the cold, insensitive environment that was his home life. 

09DC7427-F1D6-44CF-BF67-F8E600A7F9B2Michael had an older sister. Rather than beloved children I felt they were essentially perceived as two dimensional objects. I think their parents didn’t spend much time learning to know or help their kids. Rather, they hoped their children would grow up to reflect their own very clear values and choices, to become mini-versions of themselves. Their parental love was narcissistic. And putting a child’s needs ahead of their own was never part of their family code. F3D09B9A-FE98-4E07-957B-899DFABCC585

Michael’s earliest memory was from the vantage point of a 2 and a  half year old with pneumonia who’d been admitted to the hospital. His parents left him there by himself. He woke in the night and began wandering around, confused. The staff wound up putting him in restraints which he remembered for the rest of his life. Another one of his vivid memories was being a 5 year old child in Cleveland, who needed speech therapy to correct a lisp. He took the trolley by himself to his lessons with a note pinned to his coat with his personal information in case he got lost. I always found those two stories incomprehensible. 161F508F-B82C-49F2-A251-9317CDCCA635

Michael told me that he’d actually escaped the worst of his parents’ attentions which were initially aimed at his sister in a full court press attempt to turn her into a stylish debutante. She had the wrong stuff. Michael did too. Both of them recognized from their earliest years that they were lacking whatever it was their parents wanted to see in them. And whatever was intrinsic to them didn’t resonate with their parents. Their most essential selves were unseen, not acknowledged, unvalued. That uncertain boy, lacking in confidence and self-deprecating to an absurd degree, came to me packaged as a strong, daring, talented man who seemed capable of anything. And he was sweet, perceptive and gentle. What could possibly go wrong? As we learned to know each other, I could feel that boyish uncertainty constantly gnawing at him. While I pushed forward, certain there was no situation I couldn’t think my way through, Michael hung back, passive and nervous about putting himself out there, about taking emotional risks or intellectual challenges. He’d jump from a cliff, ride a motorcycle without a helmet and hop rollercoasters until his head spun. But he moved slowly and cautiously in the things that mattered. I was stamping my feet at the finish line, waiting for him to catch up. Our differences in pace were memorable, me trying to yank him forward and him trying to hold his own space. Life was interesting indeed. 515AC850-E96B-4803-AB75-E374A10C62A5

I tried to love him out of every insecurity that had taken root in him from the beginning of his life. He was intermittently grateful and annoyed. And I, despite being frequently frustrated, was madly in love with this sweet gifted man who’d been unfairly treated by those dreadful parents. After a long run of twenty years, I divested myself of my relationship with them. I couldn’t stand who they were or what they’d done. 65B0FC86-A8FE-417F-955E-2FD1A4ED68C0

Michael and I moved forward together. In time, his confidence grew as he began to build first small successes and eventually the bigger ones that made him a fabulous public servant and a gifted teacher. And more important, he was a matchless husband and a devoted loving father.843B9E6B-5C04-4EB3-8EA9-588483A64FB0

But periodically, the childhood demons emerged and he felt less than, not good enough. Over and over, throughout our years together, he’d ask, why are you even with me? It drove me crazy.E54D2049-1E7F-406A-9EDB-C4D4139BD2B2

In 2012 we began the long road of his cancer experience. Many of the trivialities we indulged in were shunted off to the side as we faced months of tough treatment and uncertainty. Our feelings for each other deepened in intensity as we reveled in every moment we shared. Still, he would ask me why I bothered with him, when he could be so difficult. In 2014, he’d been through 2 surgeries, 30 radiation treatments and 18 rounds of a powerful chemo cocktail. His birthday that year had us hanging on the edge of an uncertain future. I was casting about for an appropriate gift and fretting over finding something meaningful, something significant. EA2FBA6D-F8DB-4F96-87AE-FC5C8C3F889F

In the end, I wrote him what I hoped would be the penultimate answer to his endless insecure questioning of my loyalty to him. Here it is, as true for me today as it was when I wrote it 4 years ago, as true as it was for the many years before I wrote it and as true as it will be forever. Happy birthday, my darling boy, wherever your microbes or particles may float through the universe. Parts of you will always be with me.

Why?

Because you never tried to change me.

Because you were never threatened by my intelligence.

Because you always made me feel like I could do anything.

Because you forced me to do things I didn’t think I could do.

Because you stood up for me.

Because you always played on my team.

Because you made me feel beautiful no matter what.

Because you are a gorgeous, sexy beast.

Because you listened.

Because you heard when I wasn’t talking.

Because you are my best friend.

Because you make me feel safe.

Because you’re funny.

Because you’re smart.

Because we made unbelievable children together.

Because you stayed hot for me our entire life together.

Because you tried to be a hero.

Because you know what’s fair and right.  

Because you’d go to the wall for me.

Because we understand the world in the same way.

Because you love books and movies.

Because you’re a sap.

Because you make me crazy.

Because you’re my home.

Because you’re my best fit.

Because you hold my heart.

Because you are my always and forever.

That’s why.

6/5/14 – With all my love, ReneeEB387C8E-421A-48EE-80F3-5381B1D9B63E

 

 

 

Cancer’s Final Invoice -Redux.

7087D9AD-9A3D-4159-9E07-F5D9E0FC3B04

Merkel Cell Carcinoma slide

FD7E82AB-78D1-48DC-BB04-EE9D6BA96E9BYears ago I had a friend who was describing some symptoms that her mother had been experiencing for several weeks. I listened carefully, recognizing that they sounded very similar to those my dad had before being diagnosed with bladder cancer. When she finished talking, I gently and carefully suggested to her that what I heard was sounding a lot like cancer. She looked at me rather nonchalantly and said, “we don’t get cancer in our family.” I was really surprised. She was smart and thoughtful and in a blink just dismissed the most non-discriminating killer on the planet as a possible cause for the nagging problems. Within a year, her mother was dead from her bladder cancer, after putting off appointments over and over because cancer wasn’t part of their history.

Cancer is the original equal opportunity employer. Cancer isn’t sexist. Cancer isn’t racist. Cancer is nondenominational. Cancer doesn’t care what you believe about life or death. Cancer doesn’t care about your looks or your smarts or your interests. Cancer just is. Cancer can fell anyone, no matter your strength or your attitude. Cancer isn’t a fight. At least not a fair one. When people die from cancer, they’re not losers. They haven’t lost their battles. They’ve just been overcome by an elusive, stealthy biological mystery,  that in their cases, had no true known answer to its mutable abilities. Cancer is endlessly surprising. As cognitive beings, we naturally search for answers and reasons for what we can’t understand or what we didn’t expect. Everyone gets to decide what’s best for them. We found our own way through cancer.

96D70F2B-E855-445E-8DE9-44914E2041B8Michael knew that skin cancer ran in his family and was vigilant about using sunscreen, seeing his dermatologist every three months and attacking any suspicious spots by excision or medications. My big, strong husband, who was everyone’s hero, was felled anyway. Cancer liked his body and his immune system couldn’t do a thing about it. Cancer started growing and played a 5 year cat and mouse game with my guy. 

 

We knew from the initial diagnosis that the likelihood of him surviving his orphan cancer was small. Reading the Merkel Cell website the day of our life-changing phone call was grim. We had an instant flash of recognition-our world was forever changed. 

Both of us, different in so many ways and virtually identical in others, got ready fast, an especially tough trick for Michael who always moved slowly. The big joke between us was him saying, “Would you mind removing your feet from my back?” as I blazed past him. But he knew this was different and that speed was mandatory. We learned everything we could and followed best practices, with multiple medical opinions from the top experts in their field. We had a genetic analysis of his tumor tissue. He tried one treatment after another. I wrote every principal investigator of every clinical trial I found on the Clinicaltrials.gov website. About half of them answered me and they consulted with each other about our case. We realized they were doing their best to brainstorm for a viable solution to this disease. But there wasn’t one. Michael had eighteen rounds of a potent cocktail of chemo drugs. Over 5 years, he had 75 radiation treatments.

E533ABCA-373F-4F50-BEC6-0D69596EC3C8

For 45 of them he wore a molded facial mask which was then bolted to a table to keep him still while he was blasted with rays. He took shots to support his bones which weaken during treatment. He tried a targeted therapy, aimed at a genetic mutation.  His skin erupted in an astonishing rash that covered his back and torso and eventually elevated his liver enzymes. Just as well, as the drug cost was astonishing and economically prohibitive. 

His tiny skin cancer jumped into his lymphatic system, and over time, showed up in bones all over his body causing an agonizing spinal cord compression. More and more skin lesions popped up on his head, his neck and his groin. We went to Barnes in St. Louis to try to get him in a clinical trial for one of the new immunological drugs. He was rejected, an unconscionable decision that was impossibly hard to absorb. Eventually our local oncologist was so desperate, he applied for the drug pembrolizumab or Keytruda, which was magically approved because of Michael’s terrible prognosis. 

 

And suddenly, within less than two weeks, the tumors began to disappear. He was to be a miracle responder, one of the small number who manage to wind up in the success cohort. Within a few months, he was well, normal even. All through the various treatments, he’d had positive responses which gained us months that we used as a compressed retirement. With the prospect of death always threatening in the background, we chose to spend lots of private time together, traveling and making memories which would sustain me. We spent as much time as we could with our family, reveling in the everyday moments, a dinner, lounging in the afternoon on our kids’ back deck, going to movies or just reading in the same room. 

 

B13ABF34-FC07-4571-BF78-79477F587E9BSuddenly it seemed anything was possible. But after 6 months of treatment, Michael had a profound spike in his liver enzymes. Our doctor felt compelled to stop treatment. I argued vociferously against this as he was taking other medications which could have caused the liver issues. Knowing that his disease could get active at any time, the doctor thought we should do a challenge to see what would happen. The next thing we knew, he was gone, the second oncologist we lost in a few years. So we started over with a new one. 

Each oncologist has a personal perspective and I knew right away that our new doctor was a more cautious individual than the previous one. She was opposed to taking the risk of a challenge and instead recommended continued scanning every three months. The year 2016 was treatment-free and we cautiously continued to make the most of our time. But any moment when Michael was ill, whether with a cold or a dreaded case of shingles, I was alarmed at what I saw as a failure of his immune system. By December of that year, his behavior was getting a bit peculiar. I was frightened and in January, we had two doctor appointments and scans which indicated absence of disease. I couldn’t believe it. Michael was behaving oddly and changing perceptibly. After 45 years together, there are the things you just know. After a scary night less than 4 days after receiving a clean scan, I called the oncologist in the morning to say I was going to get him into the ER for a brain MRI, the one test he’d never had. The doctor said that those tests were hard to get in emergency,  but I was absolutely determined and used all the trust we’d built over the years to get Michael to go with me to the hospital. By the end of the day, we had the test results which showed a brain cancer presentation that could only be likened to meningitis. The doctors said he had central nervous system lymphoma. I knew they were wrong. I fought back because I knew it was Merkel cell which is what it had always been, from his first biopsy to his last. Most people with that metastatic disease just didn’t live long enough for the medical professionals to see what the disease looked like in the brain. An average lifespan following his diagnosis was 4 weeks. Most people go directly to hospice. But Michael had triumphed before. He chose a combination of awful whole brain radiation and Keytruda and managed to survive for 17 weeks. 

After a long hospital stay of 32 days and nights together, we managed to get home. For years, we’d discussed how he wanted to die. First and foremost, of course, he wanted to stay alive. But absent that option, he wanted to die as undiminished as possible, not wasted away to a shell. And he wanted to be in his home, out of a medical venue, in the space where we’d led our lucky life. He sadly wondered if he’d ever have another good day, one in which he could feel okay.

0AAAA8DC-AA00-4681-B881-7D9032E97B4AHis desires became my mission. With endless encouragement, prodding and the most ingenious protein shakes I could concoct, we stayed at home and for the most part he still looked strong, with good color, not wasted. One lovely April day, we managed to get across the street to our daughter’s home to spend the afternoon, to sit together with our grandchildren and go back to our own house, content with that feeling of normalcy. Our son who was abroad, working on a postdoc, managed to stop his work and get home so he could share the last days of Michael’s life. He died a year ago today, peacefully, quietly and unwillingly, with me beside him, holding his hand.

 

I will always wonder about the might-have-beens. There were so many steps in our journey when a small adjustment could have made a difference. I used all of my powers, intellectual, emotional and persuasive to push things outside the box of standard medical care. I learned more about cancer and medicine than I ever dreamed would have been possible for me, always a wordsmith, never a scientist. I don’t know what could’ve happened, if only. All I know is that cancer ultimately presented its final invoice to us, the price being Michael’s life which he lived and loved so well.

This past year has been full of many different experiences for me. I’ve been out in the world and also by myself. A lot. I’m deep inside myself exploring, probing and searching for my own answers, for a way to live that feels right for me. I remain in love with Michael. I expect I always will be. We had a bond that could withstand everything life tossed against it.

62786F4C-875C-43AD-A5ED-358C3A8EDBC4One of his favorite movies was The Ghost and Mrs. Muir. He watched it almost any time it appeared on late night tv. The story is one of a widow who occupies the home of a sea captain who’s died, but insists on being in his house with her, as if she’s the invader of his personal space. Of course, this isn’t a perfect metaphor for what happened to us. But I often feel that we will be in our home together, until it’s my turn to be done with whatever lies ahead of me.

5A5C3770-748B-4982-A38F-C56A43C28E3AI didn’t know I could survive a minute, a week or a whole year without Michael. But here I am, still alive and evidently destined to go forward. So I will, holding him in my heart and feeling the buoyancy of his presence which shows up unexpectedly and fills me with sensations I’m learning to accept as my new normal. As Eleanor Roosevelt said, “You must do the thing which you think cannot do.” That’s exactly what I’m doing. The magic that Michael and I built helps me. One minute, one week, one year. On I go, on we go. I miss him every day. 383C8BD5-7519-43B3-9909-11B8EAB09702Almost another full year has passed since I wrote this blog post. I still feel virtually the same as I did back then. I remain in love with Michael and I’m still mystified by the incredible connection that lives on between us, though he’s been dead almost two years. I’m still thinking away. And I’ve learned some things about  cancer and what it can and can’t do. I wanted to share my reflections in the hope that they’ll help someone out there who’s having a similar experience. 588B47DC-0391-43D5-8936-603D3FDDCD23

First, my interest in the biological underpinnings of cancer has stuck with me. I still read a lot of scientific articles and have taken a number of science classes in the past year. Molecular biology had a big impact on me. I recognize that Michael’s cancer was a remarkably successful organism. That may sound odd, but the truth is, it managed to adapt and survive multiple forms of treatment and roar back stronger time after time. More than ever, I understand the complexity of trying to cure a disease that’s alive and mutating constantly. Knowing that no matter what a person’s attitude and strengths may be, there are some creatures that survive no matter what, changes the way you think about cancer. People who die from cancer aren’t losers and didn’t do anything wrong with their attitudes. They’re just overmatched. Individualized treatment seems to be the only real solution and in American medicine, that’s a heavy lift.8F672C05-FA0F-4E64-811B-97D37F4B5431

Secondly, for some of us caregivers, the trauma of the illness and death process leaves a state of mind that can only be likened to PTSD. I see the vestiges of all those desperate days in myself. I have sleep issues and still find myself stunned to realize that Michael is really dead. I can roll over in the night and wake myself, worried that I might be disturbing my guy and then remembering he’s gone. I’ve turned into somewhat of a germaphobe. I was so worried all the time about some random infection that might hurt Michael. So I’m always looking at how people sneeze or cough into their hands and touch surfaces, wanting to spray everything with Lysol and carrying Purell everywhere. I wonder if I’ll ever stop doing this neurotic stuff.ADC07A75-250B-4C9F-8CDE-D00D9FD655D8

But there is the upside. Learning to live in every moment has stuck with me. I’m much better at keeping my perspective and not getting bowled over by the small stuff. I’m more mindful about how I choose to spend my time and with whom. I don’t want to waste any of it. I want to be the best version of myself. I spend time with my family. I spend time trying to take care of my friendships that have proved sustaining and meaningful. I appreciate nature every day. I garden in my attempt to create habitat for lots of animals while donating beauty to my surroundings. I read and I listen to lots of music. I try to learn something new and every day. I’m politically and socially engaged and I share my views and feelings in multiple ways. My life isn’t empty – it’s just less full.7578FEB1-9A01-4010-A91F-91D74DC3D6B7

I didn’t know what I’d be like without Michael. After 45 years together, I’m keenly aware that there’s not enough time in my life to ever experience anything that will ever approach the magnitude of what we shared. But I’m making an effort to compile our stories and share them with our children and their children, the ones here and the ones to come. Our saga is rich, and while we will wind up as dust mixed together in our garden, our history will live on. I’m satisfied with that assignment I’ve given myself and it motivates me to work even on the saddest days. I’ve made it through our anniversary this month. Upcoming are my birthday, the anniversary of his death and Michael’s birthday. They’ll be hard but easier than last year. The magical and inexplicable presence I feel with me every day helps. As a pretty grounded, realistic person, I never imagined I could feel such an ethereal companion. But whatever. As Michael frequently said, it is what it is. The good news is I’m finding a way forward that has brought quality to my life. In the end, there is life after cancer robs you. Who knew?4A803B2C-7361-471A-9AC1-416E2D2FBE16