Doctors called my dad the "Miracle Man" when cancer didn’t kill him. But then he needed something to help him live
In a nameless city in a nameless state, I sat in the driver’s seat of a station wagon with the engine off, reading a book propped open on the steering wheel, patiently waiting for my 72-year-old father to exit a ramshackle apartment in a back alley. Thirty minutes had passed since he initially left the car for his “appointment,” and I was beginning to get nervous. I continued to read in the way one reads while intensely worrying. I read sentences and turned pages and absorbed absolutely nothing. I carried the fast-paced best-selling thriller around for weeks “not” reading the same paragraph over and over.
Another 15 minutes passed.
I glanced up and down the street. The scene struck me as painfully stereotypical. We weren’t on a regular street, but the back, mews-style alley, in what we white privileged call the “bad” part of town. The windows in the houses were all shut, the curtains drawn.
My father finally emerged, grinning. Of course he was. He apologized for the delay.
“I had to sample to see which one would be strong enough,” he said, as he climbed in the passenger seat.
“Did you find something good?” I asked.
“Yes.” Another smile.
I was impatient for my giggling father to get in the car so we could get the hell out of there. Life had subverted my nostalgic vision of the child-parent relationship. When I was in high school, I worried that my parents would catch me the few times I experimented with cigarettes, alcohol, or drugs; that they’d sniff the heady air, or my hair, or my coat, and narrow their eyes suspiciously. Were you smoking? Were you drinking? Fast-forward a few decades and my father was hitting speed-dial on his iPhone to ask his daughter if she happened to be free to drop him off at a dealer’s house to buy weed. He was too sick to drive.
Nobody told me that watching a person survive cancer can be worse than watching them die from it. Doctors will do anything to keep you alive. The patient will do anything to stay alive. Does that mean we have good reason to live — such as potential joys and pleasures — or does it merely mean we are afraid of death? This is the conundrum that foreshadows our own impossible decision should we ever find ourselves in such a situation: no one gives up at the beginning of the battle.
I have reached this uncomfortable point in the interminable and wretched care-taking journey: I both long for and dread my father’s death.
* * *
This story started almost a decade ago when my father was diagnosed out of the blue, as such things are. He had mentioned to the doctor something so minor that he’d debated whether he should bring it up. His throat seemed sore. Sometimes. He didn’t have allergies, or a cold; nor had he just drunk a cup of hot tea. He usually forgot about the situation, until suddenly it felt hard to swallow; and then it did not, and he forgot.
The doctor had frowned and said, “Let’s take a look.”
One thing led to another, the butterfly batted its wings, and my bamboozled father sat in front of a dark slide of his secret imperfections. The tumor looked like a flake, nothing, an illusion of the light on the screen; he was tempted to wipe it off the way one wipes off a speck of dust on a photograph before realizing it’s a deeper, permanent scratch.
* * *
It would be unfair to focus on my father’s death, without first examining his life. My father’s burdens in life did not begin with his own birth. They began with his older brother.
My uncle was born with a hole in his heart, resulting in an apoplexy of familial love. On one hand, the family prevailed, for my uncle lived another 56 years, more than anyone expected. On the other hand, those years were most notable for the brilliant mind that could not hold a job; who made fortunes and squandered them, who couldn’t seem to find the middle ground between yachts and homelessness, who stood at the forefront of recording jazz and wrote best-selling books, but whose back-handed deals and absentee ways ended in a funeral attended by a total of five family members.
Somehow love is a weakness when it comes to common sense. My grandmother thought she could mend her older son’s hole with attention and indulgence, and still she was surprised when that failed. We hope, and hope, but a hole is a hole.
My father, the younger son, was one of the things that fell through that hole. He was hale. He could be put aside. And he was.
Not to knock adolescent creativity, but most teenagers seek attention in fairly predictable ways: they are bad and, if that doesn’t work, they are notoriously bad. I do think there’s something painfully astute in this approach: parents want their kids to be okay. When they stop noticing that you are not okay, then all you can do is make it more obvious. For years, my father simply lived in quiet unhappiness. As he grew older, he learned to fail more spectacularly.
This did not work as well as he would have liked because, he found out, he would never be able to fail as spectacularly as his own father, who had engaged in some suspicious financial activities that eventually landed him in jail. By the time my grandfather was released, my father had graduated college with the lowest possible G.P.A. one can manage and still graduate. My grandfather was not overly concerned; by then, he’d moved to Greenwich Village where he scratched out a living as a waiter, moonlighted as a Communist, and died at 59 from a heart attack.
My father rarely talks about this phase of his life, and I knew little about it, until one day, when I was nosing through my father’s office, I discovered three black binders. They contained an epistolary record: every word my grandfather wrote in jail. There are letters and stories, and both are strangely unsatisfying. The stories are simple fairy tales that unimaginatively regurgitate the old classics. The letters are cold and impersonal. They do not mention the routine of jailed life. There’s nothing about how my grandfather spends his time. He doesn’t even muse on his unexpected fate or the trials of white collar confinement in a maximum security facility. Instead, his letter focus on the books he’s reading. There’s analysis and philosophical discussion, but there’s not a glimpse of the person experiencing what must have been a shockingly different lifestyle than what he’d previously been used to.
Letters, from my own experience, are often small, profound windows into a person: they are untainted by the distortions of time or memory. Think of how we glean the hidden personality of the famous from their personal correspondence! Yet, my grandfather carefully omitted any evidence of himself. That emotional absence explains more to me of the relationship between a man and his son than any anecdote my father tells.
After my grandfather’s death, my father was freed to become the man that I would later know. He went back to school, racked up a master’s and doctorate in psychology. He opened his own practice and became incredibly successful. He garnered accolades for his work in educational testing, learning disabilities and forensics. Lawyers hired him for custody as well as criminal cases. Soon he was one of the most popular court-appointed psychological evaluators for the Family Court judges.
My father was, above all, dedicated to family. He had some friends, but if he wasn’t at work, he was with his family. Though his parents showed an appalling lack of interest in him, the aunts, uncles, and cousins made it their duty to fill the void. He did not miss a bar or bat mitzvah, graduation, or wedding. As the product of separated and neglectful parents, my father believed that being a good husband and father was his most important act of salvation.
I note these accomplishments not because I think that my father was somehow unique; he was in fact perfectly ordinary, dedicated to his work, his community, and his family. His only run-in with the law had been a couple of speeding tickets. There’s not much about his life up to this point that would be worthy of writing about. To me, that signifies a successful life. Most of all, my father wanted his life to be nothing like his father’s. He wanted to live a life he could be proud of and which would make all who knew him proud to be associated with him. He did.
* * *
We all think about aging; it is unavoidable as age raises its guns and aims. We all think about death too, though perhaps abstractly, until it nudges us from a single degree of separation. There’s no greater aphrodisiac for life, I’ve seen, than being given a death sentence.
My father greeted his diagnosis with so much opposition that we actually had hope. The doctors moved very fast. The operation was performed. The cancer was excised. My father was returned to his home to recover before the regimen of post-operative treatments began.
The oncologist gave my father laughable odds. He looked him in the eye, though, when he said, very seriously, almost apologetically, “There’s only one way to do this. I have to try to kill you. If I don’t succeed, you’ll live.”
In spite of the oncologist’s best efforts, my father remains alive. The humilities of life have tried their best to do him in. Not in the old way, the protracted disintegration that grinds away function, a corporeal mulching, but in the new way, by “saving” one’s life.
We can never prevent death, but we can delay it as never before. We have the miracles of biological technology and medical advancements: antibiotics, organ transplant operations, stem cells, and even poison otherwise known as chemotherapy.
Still, as a friend (who also happened to own and run a funeral home for over four decades) once said, as she lay in the hospital in anticipation of her own passing, “No one gets out of this alive.”
Ten years after the diagnosis of “terminal” esophageal cancer, my father lives.
It is a blessing, for every day is, and it is a curse, for every day is.
The doctors call my father a “Miracle Man.” There are very few survivors of his stage and type of cancer. He shouldn’t exist. Oncologists of terminal cancers, who grimly attend to the clinic like morticians, actually smile when they see him. He gives so much hope. He is an impossible statistic! A betting man would have purchased his burial plot.
Although my father is alive, I ask myself constantly, what does this “alive” mean? To what lengths to do we go to keep someone alive? Once we do manage it, what if the quality of their life is such that they might have been better off dead? We have a new cancer problem: patients surviving, but not thriving.
My father resembled a real-life nightmare, an un-fictionalized Freddy Krueger: stabbed, mutilated, chopped into bits and to all appearances dead; yet, just when I thought the horror was over, he returned. My father got back up, to terrorize once again, with thinned hair, blackened nails, shallow breathing, nausea, hacking, and dumping. He stood five feet ten inches tall and weighed 125 pounds.
* * *
This was when the doctors first prescribed marijuana. In order for my father to live, he needed to eat; in order to eat, he had to keep food down. The doctor filled out a script for the pill Marinol. It was not the best option, but what could they do when the patient lived in a state where medical marijuana was not legal? The alternative was liquid oxycodone, which is highly addictive and dangerous. And legal.
While cancer may go into remission, the scars and symptoms of cancer treatment never do. My father continued the struggle to breathe, since the radiation had affected his lungs. He struggled to eat, as he always would, because he had no esophagus and a minute stomach that resisted its role in absorbing nutrients. Often, after eating, he would experience either violent vomiting or dumping.
Over the years, my father developed two new forms of cancer and survived countless more surgical procedures. Since the doctors could not prescribe marijuana, they instead prescribed oxycodone. They encouraged him to use it. Liberally, if necessary. They had no choice. It was the only legal option. While accidental overdoses and deaths rose and rose due to prescription painkillers, my father was given no choice by the medical profession, legally, except to depend on one of the most potentially deadly, dangerous and addictive heroin-like drugs available. Meanwhile, the rate of overdoses linked to these substances reached a county-wide high, doubling and tripling. A friend who works for the fire department informed us that his station received an emergency call every single shift for overdose cases. We watched politics go into overdrive, maligning doctors for over-prescriptions, but in our very personal experience we found the doctors handcuffed by the law. The federal and state government forbade medical marijuana.
My father hated taking oxycodone. He hated how it made him feel. He hated the sense of addiction. He made one of the hardest choices of his life. He went off the oxycodone and chose, for a long while, to live in excruciating pain. He couldn’t walk up and down the stairs. He couldn’t eat. He seemed closer to death than ever, and it wasn’t cancer that would finish him off.
Finally, he made that fateful decision that went against everything he’d worked for in his life. He, who revered the law, would defy it. My father contacted another cancer patient, who knew a dealer who serviced a ring of cancer patients with marijuana.
The first time my father smoked was a bit of a shock. I’d gone to my parents’ house to help them prepare dinner. I was stirring soup, when I heard a giggle from the hallway. I poked my head out of the kitchen and spotted my father standing by the front door, wearing nothing but underwear briefs and a swimming cap. He’d pulled the cap up so it ballooned off his head like an afro. He waved to me and added a pair of goggles.
It would have been funny if I hadn’t been so relieved to see that my father could actually stand upright for longer than five minutes.
Because my father had to, essentially, buy pot off the street, pot that people searched out for the buzz, not for medical properties, he found himself getting too high. My cousin Alex visited during this time. He stayed, as usual, with my parents in one of their guest bedrooms. He’d tell us how, after being out visiting other relatives, he’d return home to find my parents sequestered behind the closed door of the den. He pushed it open and smiled at them. “Look,” he said, in an affected tone of surprise, “I’m not angry at your behavior. Let’s just say that I’m…disappointed.”
Eventually, my father came up with a different solution. He decided that he would become the resident of a second state, California. He flew there and established residency. He paid for an apartment. He officially acquired a secondary residential address. He took his documentation and applied for a non-driver state identification card. He was referred to an oncologist there, one who specialized in pain management and dosages.
The specialists proved how much research had been done treating symptomology with medical marijuana. They helped pinpoint optimal medical strains that would increase appetite, alleviate nausea and permit my father to work without a “high.”
It became immediately clear to him, after his first trip, that the dealers on the East Coast were new to the game. They were dilettantes. They did not have the necessary expertise for matching strains of marijuana to particular conditions or understanding the unique reaction in individual patients. The stores in California and Colorado understood that they weren’t running bars; they were running pharmacies, which required pharmaceutical experts. The East Coast trade was simply not medically proficient.
My parents, not well versed in criminal activity, undertook the cross-country drug trade like the neophytes they were. They began simply by flying out to California and mailing home packages through the post office. Obvious, crass, and easily traceable — and yet, for years, it was very effective. They packaged the pot in the bottom of tissue or candy boxes, or in boxes wrapped in Christmas paper like presents.
It was inevitable, of course. One day, a package did not arrive. It was being held by the police in another state, intercepted en route to my parents’ home. Though my father usually wisely paid cash and used a hotel’s street address for the return address, this time he’d been too sick to take the normal precautions. He’d used a credit card to pay for mailing, with his own name, address and phone number. He flunked Criminal Acts 101. My mother was afraid to answer the door. She waited in abject horror for the feds to show up on the front porch of her three-story brick middle-class home. The weeks passed and their fears abated. Then, a second package failed to be delivered. My parents hired a lawyer, who spoke to the police, and the investigation was dropped. Still, it was clearly time to find a different approach.
Their secondary approach was even more simple, and admittedly naive. They were going to walk right onto a plane, loaded down with drugs. Once I got over the shock, I banged my head against the wall.
“What are you doing?” I asked.
“I will do anything for my husband rather than watch him in this much pain,” said my mother.
“I don’t want to know anything,” I said.
My parents applied for fast-track pre-approved boarding. My mother wanted my father to use a wheelchair. “Over my dead body,” he said. He would not do it. He would, like Dylan Thomas, rage against the dying of the light and “damn well walk there on his own two feet.” My mother offered to play the role of invalid herself. They carried pill bottles loaded with empty pill casings, which they stuffed with marijuana. Over time, my father learned that some oils had less of a “high” effect and still treated his symptoms. The oils look much like ordinary ink cartridges and required no disguise at all. My criminal parents have nailed down this new routine. Every six months or so, they fly around the country, purchasing and packaging drugs, which they wheel through domestic airport terminals in their black roller-wheel luggage, and pass easily undetected through airline security.
I feel sick on the days that I know they are traveling. In spite of my desire not to “know anything,” my mother calls once they’ve cleared security to report, “We’re through!”
There have been close calls. There was one time that my mother urgently needed the bathroom. She leaped out of the wheelchair and sprinted to the ladies’ room, before more contritely returning and slumping with geriatric flare back into her handicapped state.
There was another time when my mother questioned an FBI agent on how he’d get away with smuggling drugs. She asked him point blank the mistakes that people made that led to their being caught. “You asked an FBI agent,” I repeated, bewildered, when she told me. “I’m just a little old lady,” my mother laughed.
Homeland Security would probably never pick my parents out of line. Firstly, the TSA is primarily concerned with explosive devices. They pat down bodies, order the removal of shoes, empty water bottles, and scan for knives, guns and razors. They take precautions with laptops. They’ve not yet taken notice of the newest category of law-breaker. They are short, frail, spectacled, and grey; they walk with the slow, deliberate delicacy of one afraid of falling. They don’t belong in jail. They belong in a re-make of the movie “Cocoon.”
* * *
In middle school, I was once given an essay assignment based on a classic moral quandary. We were asked, theoretically, what we would do if we had an emergency; a child, suddenly urgently sick, who required medication from the pharmacy. It was the middle of the night and the pharmacy was closed. What would we do? What would I do? Would I break in to steal it? Would I break in and leave the money? Would I wait until morning, obeying the law, and risking my child’s life?
This philosophical dilemma now seems absurdly simplistic to me. What is even the point of practicing morality on black and white choices?
At every oncology visit, my father informs his doctors, providing them with a log detailing the types, frequency, dates and dosages of medication. He does not lie. He keeps a professional, specific and accurate record. The doctors listen compassionately. They never once chastise or admonish. They nod their heads. They get it. They too are waiting as the states decide on legalization.
* * *
Though my father is retired, he ironically finds himself on a more and more regular basis being recalled to his work for one last obligation in his patients’ lives. They call for him on their deathbeds. Even if he hasn’t seen them in years, the calls come. Would he mind stopping by? He never refuses. He attends to them in the hospital, at home, or in relatives’ homes.
This is one aspect of his work which my father is better at now than ever before. He’s been in his deathbed. He lives in his deathbed. There’s no telling how long. He’s received his fair share of phone calls and visitors with last words for him. Though none say so explicitly, I know the intention is to say goodbye. I don’t like that idea. Good-byes have never soothed me much, personally.
“Why do they ask for you?” I asked my father. As a psychologist with so many decades of experience, I presume (or hope?) that he has some special insight or wisdom. Is there something that he can say that will bring peace? Are there magical words to ease that transition to whatever comes after, or the possibility of nothing coming after?
“I don’t say anything,” my father said. “I’ve sat with them through good and bad times. Now, I sit with them again.”
Perhaps that is all we need at the end. Someone to sit next to us.