Survivorship
The anesthesia is wearing off and harsh light hits my eyes, disoriented in the recovery unit. A nurse pushes past the curtain and greets me with what feels like urgency.
“How are you? How’s your pain?”
Squinting, I recognize her from before surgery, but her name is long lost. Laying as still as possible, I mutter back, “I’m…ok?”
“OK is good,” she states, her head nodding.
She lifts my gown and inspects my abdomen, checking each of the six bandages and my drain. I look away in disbelief, and then hear the familiar noise of a Foley bag emptying and her pushing buttons on my IV pump. I feel relief as the light fades out quickly, and then I feel nothing.
“Josh? Josh? Hey man — it’s John. Can you hear me?”
Awakened again, I recognize the voice of the intern on my team, a bright-eyed first-year who needs a haircut, but I suspect doesn’t have the time to get one. This must be my post-op check, which means I’ve been out of the OR for two hours. The clock on the wall says it’s nearly 8 PM. I must’ve been a seven hour case, but how is that even possible?
“How did it go?” I say, hoarsely, hopeful but half expecting more bad news.
“Fine, man. It went fine” he says smiling. He seems genuine.
“Everything reconnected?” I ask.
“Yes”
“Any sign of disease elsewhere? On the surface of the bowel?”
“No. It looked clean. Can’t be sure until we have final pathology, but it looked clean. Attending will be by in a bit to check on you. We’re going to move you to the floor soon.”
“I — , I — ,” I stammer out, searching for the next thing to ask. My question script has run out and my eyes well with the beginnings of more tears.
“You should rest. Let me order you some food,” the nurse interrupts, putting her hand on my shoulder and saving me with something new to think about. She picks up the phone, and from the edge of my vision I can see the intern copying down my vitals from a monitor. Life fades out again and I’m asleep.
The next morning, I get up and force myself to the edge of the bed. I sit for what feels like an hour, eventually willing myself into stutter steps over to the sink to brush my teeth, wash my face, and shave. The first motions of recovery are heavy with discomfort. My abdomen aches and my back is sore, but I push myself to stand upright for as long as I can tolerate before sitting back on the edge of the bed. Then I do it again, and again, until I’m tired enough to lay back down and take a nap. Later, I make three strained laps around the nurse’s station, walking askew like a weighted sapling pushing an IV pole.
My eyes see nothing but surreal medical theater, bizarre and absurdist to its core. Two weeks ago, I was hammering intervals under a hot sun in a pack of greedy cyclists, readying for cyclocross season, and today I’ve got seven different bandages on my belly and two IVs. What about 12 years ago, when I helped my father do the same wounded march after his operation for colon cancer? How can this possibly be real, I ask myself. Is it possible to accept the reality of the situation, but also still be in total disbelief?
A few days later I am discharged from the hospital, and a fortnight after that my surgeon calls me at home, at the end of the workday. The setting sun has turned the sky shades of pink and blue, and the evening air is crisp with the hope of fall. Recognizing the number from the medical center, I take the call outside on my front steps. It’s October 5th, 2020 , my five-year anniversary of being free and clear of Hodgkin’s Lymphoma and the day that was supposed to be my exit party from cancer care. My surgeon tells me that the pathology report from the operation is complete: I have Stage IIIC colon cancer. She says it’s good news, though, because the margins of the resection were clean and at least I’m not Stage IV. Yes, at least there is that I think to myself. Truth is, I am genuinely thankful amidst a profound heartbreak, knowing that in medicine bad news can always be far worse.
We end the conversation and tears run down my face while I momentarily debate the merits of throwing my phone into the street, if only I didn’t need it to schedule more appointments first thing in the morning. I am exhausted, emotionally dried up; rage and tragedy fight endlessly in the arena in the middle of my chest. The day ends and I lay wide awake in bed, staring at the ceiling, wondering how I will ever fall asleep.
Roughly a month later I started chemotherapy for the second time in my life, and a few days after that it was my 43rd birthday.
Looking back on less complicated times, as a child I was fortunate to spend many weekends with my paternal grandparents. My father would drive me to their home after school on Friday and pick me up in the late afternoon on Sunday. Over those two days my grandfather and I would wake early each morning and have coffee (mine mostly milk and sugar; his, black), eggs, and toast together. We’d spend the days doing chores, sitting outside, and fishing in the pond down the dirt lane from his house. He was a hero of the war in the Pacific, and to a boy a few years shy of becoming a teenager being around him was akin to orbiting some great planet. Those days felt endless and idyllic, as if stretched out like an infinite thread.
My grandfather and I were very close, and I think about those weekends often. There is a photo of him that sits above his old steel Navy desk, in fact, where I sit and work each day. The photo is from 1942, and my grandfather is looking out from his Dauntless dive bomber on the deck of the USS Hornet, ready for takeoff. Clad in a leather helmet and Mae West, propeller wash rolling across the fuselage, he looks ready to fight the Japanese at the Battle of the Santa Cruz Islands. Devoted to duty and country, he dove out of the blue Pacific sky that day through a hail of flak and dropped a bomb onto the middle of an enemy aircraft carrier — the Shokaku, infamous from the attack on Pearl Harbor. The purpose of his life in that photographic moment is startlingly obvious.
Behind that representation of determination and gallantry, however, I know there was a man who wrestled with the emotional cost of war and the duality of his legacy. On the one hand, he led a squadron of warriors and disabled an enemy carrier, an unquestionable heroic act in an encyclopedic legacy of wartime leadership and bravery. On the other, he survived terrible things, close personal brushes with death at the Battle of Midway, and he witnessed the killing of many of his colleagues and friends. Destruction of life and property is the nature of war, of course, but I know that reconciling those experiences and his legacy wasn’t easy for him. One weekend he made that clear to me, in so many words, not long before his passing.
I remember the moment well, even considering it was over 30 years ago. My grandparents had a set of stage chairs that were kept in the garage; they were high-backed and made of a comfortable canvas, with one in blue and the other in red. Inevitably, in the waning heat of the late afternoon, we would pull those chairs out and set them up on the walkway to the front door in the shade of the big magnolia tree. As the sunlight and temperature gradually waned, we would sit and talk about life and the day and relax. That day, I recall asking my grandfather about what kind of bomb he had dropped on that enemy carrier.
“A thousand-pound armor piercing,” he said. “Want to see what that does?”
I said “yes” — as any curious boy would — and we walked into the house and back to his office. I watched from the doorway to his room as he pulled some files from an old cabinet in his closet, sat down at the same Navy desk that is now mine, and quietly turned on the reading lamp. He motioned me over to see the files and then showed me what appeared to be photocopies of original photographs, inscribed around the edges in hiragana. He explained that a Japanese historian had sent them to him after the war. The pictures were from the deck of the Shokaku and they captured men with firehouses racing across a mangled carrier deck, spraying water towards eruptions of flame.
“You see,” he said, “the bomb was designed to break through the flight deck and then explode deep in the ship. More damage that way.” There was no mistaking from his tone that he wanted me to know it was a grave act.
I recall that we talked for a bit about the photographs, and why they were sent to him. As a survivor of the naval air war in the Pacific, he told me, he was often asked to recount his experiences for historians. He was an extraordinarily humble man and even saying that much was the first I had ever heard him mention his own notoriety. Not much long after that he put the photographs away and we returned to sit outside as the last bit of daylight faded.
Shortly thereafter, just as the last shape of the sun fell below the horizon, right before we put the chairs away and returned to the house for dinner with my grandmother, I remember my grandfather turning to me and saying, “Little Boy,” as he often called me, “I don’t want to talk about guns and bombs and war anymore, ok?”
More than thirty years have passed since my grandfather said those words to me, but I remember the moment as if it were yesterday. I’m certain I’ll never forget it, in fact, because his words resonated through me. I just knew there was more to what he said than what was revealed. Now, after two cancers and having already lived the majority of my life, I sense the most difficult part of his life’s narrative and my own have converged. Allow me to explain:
Spring arrived here in Seattle two months ago after what was truly a wretched winter. Setting aside the perpetual gray skies and damp weather of the last season, the coldest months were heavy with personal loss.
At the end of 2022 my close friend and mentor in surgery passed away after a long battle with bowel cancer. He and I had been diagnosed at the same time and we spoke often about our respective courses of treatment, commiserating on the cycles of misery with chemo and the dread that accompanies every new test and scan; he encouraged me to stay positive when the days were darkest and confided in me his own struggles. He was diagnosed as Stage IIIB, one click lower on the risk dial than I.
The last time we spoke was on a Monday, trying to shore up plans over the phone to see each other on Friday. His disease had advanced over the prior six months despite additional chemo and surgery and we both knew that time was short. “Come on down,” he said through a heavy cough, “we’ll go get a coffee like old times.”
I reached out again on Thursday afternoon to confirm plans before driving out the next morning and I didn’t get an answer. Immediately my heart sank, imagining the worst. His wife called the next afternoon to tell me he passed away the day before. He left us all just as he lived, I thought, selfless as ever, making time for others with only a few days before the end. Even for me, his old friend and student.
Then, merely a month into 2023, an old compatriot from my years in competitive rowing passed away at 44 years old from pancreatic cancer. She had lived nearly three years with the disease, enduring innumerable cycles of chemo and its side effects. I was fortunate to be in contact with her often, doing my best to help her find new trials and therapies that matched her disease profile. Her passing, though anticipated like my mentor’s, still came as a surprise: one day she was there and the next she was not. All that is left now is the memory of her ferocious spirit as a competitor and patient, working diligently right to the end, always hopeful to find a way to prolong life.
Finally, less than a week before winter’s end, another friend and physician died from breast cancer. I had coached her as a young junior rower nearly twenty years ago when I was in medical school, and we had stayed in touch over the years. She was diagnosed in her early 30s, underwent a bilateral mastectomy and reconstruction, a full course of chemo, and then was surprised years later with a relapse that was already so far advanced it was hopeless to treat beyond palliative measures. She called me on Friday afternoon, and I heard the shock and desperation in her voice when she told me her care team had ripped her from life as usual, delivering babies in her work as an obstetrician and hoping to start a family of her own, to meeting with hospice and having end of life discussions. Through heavy tears on both ends of the line she shared with me the horror of the moment that every cancer patient fears most and how lost she felt, while still so driven to stay alive. Three months after that call she was gone, too.
I realize that this season of life — the middle years — is often where bearing witness to the passing of friends and family begins in earnest. However, that reality is little consolation as the lone survivor of my afflicted cohort. Each of my friends’ deaths has diminished the world in an incremental amount and, as John Donne said, I know that each death has diminished me in turn. My friends were special and unique individuals who made my life — all lives — much greater than without them and now we only have their legacy. So, there is this obvious tension between being in a beautiful spring season filled with life, with blossoms and the budding of fresh leaves, while being simultaneously and perpetually caught in an immense riptide of loss.
Unlike my grandfather and my father, I never served in the military. I never carried a rank, stood a post, or faced the grim realities of combat. But I can tell you about loss the same that they could and, I am certain, about the weight one carries after making it through. That is where our individual narratives have converged.
Now, finished with the five-year monitoring period for Hodgkin’s and just over two and half years since the end of chemo for my second major malignancy — dropped seamlessly again into that fugue state of cancer care where you’re simultaneously not obviously sick but not deemed well, either — it’s easy to wax nostalgic about the wistful, unchartered time of youth. Time without the question of time’s end is the hallmark of life lived in wellness. That seemingly safe but entirely mundane space where the inexperienced bask unencumbered by the gravity of their own mortality.
You can imagine what that state is like, for a moment. Busy with lots of things, but nothing that truly defines you as a person. Pressed to meet deadlines, but no deadline that might mean the end of all your living time, forever. Maybe even pondering your legacy on a sunny afternoon, but never forced to confront the idea that the time to measure and shape that legacy is potentially — probably — already long gone. These are heavy concepts, and our minds rightly relegate them to seldom visited spaces.
I can tell you, though, after cancer you think about your life and what’s left of it often. For some, it may be less frequent; for me, it is daily. It’s impossible to make it through a day without considering the opportunity cost of your time, thinking about what you’ve been through, or what’s potentially to come, even if just fleetingly. This life in the wake of surviving two major malignancies could not be more different from that life before illness, from those carefree weekends as a child.
Whereas before, on that sunny lane with my grandfather, the days felt endless; these days, I strive to shake off the undercurrent of a looming, early end. Then, when I drifted through the weekend as only a child can do; now, I wake each day to the native drumbeat of too little time. Then, where the archetype of legacy was embodied by my grandfather, now I see only how far one must go to meet that standard. They named this tensioned state of life after trauma survivorship — literally the state after living through some awful thing — and it is interminable. I’ll be here until my days end.
Survivorship, to be blunt, has been harder than the cancers. When you’re in treatment, you compartmentalize what’s happening to you and grind it out; after all, you’re focused on simply getting through each day and the plan. Then, when you finish treatment and you’re jettisoned by the system back into life and the monitoring period, it’s up to you to codify the plan, reassemble the pieces, and make sense of what remains. That’s a tall order when you’re recovering, working, and trying to live.
I’ll give you an example of one struggle: on a sunny spring afternoon, two months after finishing chemo, I broke down into tears while out riding in the wilderness east of Seattle. Two hours away from literally anyone and all I could think about was if there was something growing in my belly and if I would die by relapse. I couldn’t pedal any further with my mind racing and tears running down my face, so I sat on the side of a gravel fire road for an hour trying to make sense of why I was out riding a bike like a man possessed for hours on end. As a physician, I knew these symptoms were the hallmarks of post-traumatic stress, but what I couldn’t get my head around was why hadn’t my care team even screened me for risk of PTSD or depression?
My oncologist, a gentle but very serious lady, takes the long but largely prehistoric view on the struggles of survivorship. “You just need to get some time between you and it,” she told me once after I confided in her I was having dark thoughts. “It,” in her view, encompassed everything: the cancer, the treatment, the bureaucracy, the experience.
If you didn’t know her like I do, you would feel blinded by the earnestness of such a statement. At the time I recall her counsel being something between a stern but loving parent saying, “buck up, kid — it’ll be ok,” and a steel-nerved gunnery sergeant barking out “get your shit together, Private— we got a hill to take!”
Truth is, she was saying what she believed had worked for others and was also the best she could do, even at a major academic medical center. There just simply weren’t any meaningful resources beyond group meetings. Our healthcare system wasn’t built for vets like my grandfather in his time, or cancer survivors like me in the present. I could speak at length about the drivers for the dysfunction and the absence of survivorship care after cancer, but mostly it just comes down to there being no roadmap, no meaningful payment or reimbursement structure to incentivize providers, and very little ancillary support infrastructure.
Someone needs to care enough about survivors to mandate dollars and programs, basically.
After the war, my grandfather continued to rise through the ranks, eventually making Captain and commanding aircraft carriers and naval air stations. He finished his career in the Navy in 1964 as the Command Inspector General after over thirty years of service. From there he went to graduate school, learned to teach calculus and French, and settled into a career at a college preparatory school near his home. His life after the war was quiet and largely unremarkable; until I came along, he rarely talked about the war.
In a sense, he was the ideal patient for modern oncologic care. After the war, he put his life back together, on his own, by putting time between himself and “It.” Just as countless other survivors of war and trauma and cancer have done before him and since. But, even to a Little Boy, it was obvious that the wounds of change and loss were never healed: he was still a person trying to make sense of it all as best he could. The only way to deal with it was to compartmentalize and keep moving forward, to let time heal all wounds. Granted, society has evolved to where we are now a little more open to therapy than his generation was, but after war or disease or trauma shouldn’t that be the minimum as part of a comprehensive care plan? Isn’t that what we owe ourselves as a society of survivors?
I certainly believe so.
So, on this National Cancer Survivors Day, as I sit at my grandfather’s desk and look at his photo, I see him looking back at me. I see a man who loved me about to go do the thing that made him a survivor, and my heart fills with empathy for what would be his life after all the battles, and the death, and the war. I look at him there now and I think, you know, maybe that moment you’re in isn’t too different from my own here in survivorship. We’re both on the sharp end of this thing and we just gotta get through It and get out alive — but I wish it didn’t have to be that way.
