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Happy Birthday, You've Got Cancer
Tomorrow is my birthday.
When I was a kid my parents asked me the same question each year, “what do you want for your birthday?”
Year after year I answered, “anything drum related.”
And year after year I got the same thing - a sweater.
Last year I got something different - a possible cancer diagnosis. I would have rather gotten a sweater.
I go to my doctor once a year for an annual physical, but other than that, I view going to the doctor like most men of my generation.
There has to be at least one of the following happening before I’ll go;
Blood pouring out of an orifice
Bone breaking through skin
Abdominal pain so bad I can’t use social media
Throat pain that prevents beer drinking
A rash that covers at least 85% of my body
But last year, in the weeks leading up to my birthday, I felt crappy about 10 different ways and finally broke down and made an appointment.
For almost 20 years I had the same doctor, Dr. Khouzam, who I loved. He was an old doctor, in the best sense of the term. The kind that’s been around since before WebMD and has seen everything at least once.
In high school we had a sports trainer name Randy. No last name - just Randy. When you got hurt they sent you to Randy, whose advice was always the same. Ice it!
“I think I pulled a muscle Randy.”
“I think I broke my ankle Randy.”
“I think I have frostbite Randy.”
Randy was great because he knew that 99% of the stuff that happened to you wasn’t nearly as bad as you thought it was, and “icing it” was the perfect placebo you needed to get back in the game.
Dr. Khouzam was the medical version of Randy. He knew that most of what you thought you had was informed by what you had read on the internet, and he knew how to reassure by prescribing some benign treatment.
Unfortunately, Dr. Khouzam recently retired, and the doctor I was about to see had been assigned to me by insurance lottery.
“What’s happening today?” she said.
“Well, doctor…” and I proceeded to rattle off a laundry list of minor complaints. And as I did, she sat at her laptop, entering them into what I rightly guessed was a symptoms software designed to diagnose your ailment via algorithm.
When I was done, she hit “enter,” peered at the screen intently and said, “Hmmm?”
“What do you think I’ve got doctor?” I said.
“Well, it could be a couple of things, but I’m leaning towards carcinoid syndrome.”
A syndrome doesn’t seem so bad I thought to myself. A syndrome is something ongoing, right? Which means nothing serious.
“Okay,” I said confidently. “All I care about is, ‘can it be managed?’”
“Ummmmmmm, yeah,” she said.
That “Umm” seemed too drawn out, but I quickly banished any fears from my mind.
“I want you to have some tests. Take these to the lab and they will get you all set up. The blood tests are not standard so it might take a week or two to get them back,” she said.
And with that, I was off to the lab.
As I sat in the waiting room, I played back what she said in my mind.
Carcinoid syndrome. Carse. Carcinogen.
“Wait, that’s not good,” I said to myself.
I found out via the wonder that is Google, that Carcinoid Syndrome is a slow-growing type of cancer where multiple tumors form in your small intestine, digestive tract, liver, lungs, and pancreas.
“That’s really not good,” I said to nobody in particular, and then proceeded to subscribe to every organization, website, forum, and Twitter feed that was even remotely associated with Carcinoid Syndrome.
“Mr. Lund,” said the receptionist. “You’re next.”
After giving blood I got a surprise.
“You’re doctor ordered a 24-hour urine catch,” said the nurse.
Nothing in that sentence sounded appealing to me.
“What we need you to do is to capture all of your urine during the next 24 hours in this,” and she handed me - I shit you not - a yellow plastic jug, the type that carries extra fuel for your jeep when you take off into the Sahara desert after your dream girl dumps you.
“You should keep this in the refrigerator between uses,” she continued. “It can get pretty pungent if it stays warm.”
I made a mental note to file this under “no fucking duh!”
What do you do the first morning after you think you have cancer?
You might think that you spend it taking stock of your life. Getting your affairs in order. Figuring out who you have to reconcile with. Or how to make sure your family is taken care of after you are gone.
But you don’t do any of those things.
What you do is burn your kid’s toast. Three times.
That’s what I did.
“Daddy, the toaster is smoking.”
“What? Oh yeah,” I mumbled as I threw two more charred slices into the sink to join their charcoaled predecessors.
“I’m going to lose all of this,” I thought.
The mornings with my kids. Dropping them at school. Picking them up. Doing homework. Lazy Sundays. Trips to the beach. Student of the Month awards. Bad breakups with a-hole boyfriends. High school graduations. First day of college. First job. The walk down the aisle. Grandchildren.
“I won’t be here for any of this.”
The next week was a blur. All I remember was a non-stop loop playing in my head. It detailed all the time I wasted. All the opportunities I didn’t take because I was scared or afraid of looking the fool. All the “shoulds” of my life.
And so I waited.
Despite wanting to believe that doctors are altruistic angels in human form, putting nothing ahead of our individual well-being, the math says that’s just not the case.
Most doctors these days are overworked, with 100’s if not 1000’s of people to attend to. They would not be human if those numbers didn’t engender a certain arms-length approach to their patients - one that allows them to keep their distance, objectivity, and sanity.
And though you wish they were sitting there like a catcher watching a runner lead off of first, waiting for your results to come in so they can rifle them down to second base….
Well, you get the point. Your results are your priority - not theirs.
And so I continued to wait.
Then I got the call.
In my experience, when you game the results phone call, there are some scenarios that are much more preferable than others.
If the doctor calls during the day, you’re screwed. That means your results are so dire they had to stop what they were doing to tell you immediately. If they call at the end of the day, there’s a slightly better chance the news is good, but it’s still not the best-case scenario.
What you want is for the nurse to call you. The nurse never calls with bad news because they know you’ll freak out and have a ton of questions that only the doctor can answer.
So when I answered the phone and heard, “This is Jackie, Dr. Phan’s nurse,” I knew I was in the clear.
Then she killed me.
“I have bad news,” she began.
Time froze, just like they say it does. My life flashed in front of me, just like they say it does. I got lightheaded, just like you see in the movies. And I thought of my kids and how much I would miss them.
“I have bad news,” she began. “They lost your urine sample and you’ll have to do another one.”
What. The. Fuck?
I don’t know what nurse training 101 entails, but I’m pretty damn sure it should include a section where, when calling a patient waiting for results on a life-threatening disease, you make sure to start the conversation with, “everything is fine, I’m just calling because….”
I had to teach the school nurse at my son’s school the same thing recently.
“Yes,” I said.
“This is the school nurse. Your son, Camden….”
“It seems that while he was out on the playground….”
“That he, oh, hold on. [talking to someone in the background] Yes, we are going to be doing the ‘May is health month’ program at Friday’s assembly. Now, Mr. Lund? Where was I?”
“Camden,” I shouted.
“Yes. It turns out that he got a splinter in his finger on the playground and I wanted to let you know he came into the health room and we took it out.”
I’m still here so you probably know the upshot. I didn’t have Carcinoid Syndrome.
Despite the algorithmic efforts to assign me cancer, I just had a set of low-level symptoms most likely brought on by stress.
Friends and family have weighed in on this experience, many of them expressing anger at the doctor for her clinical instead of experiential approach to my diagnosis.
After all, Dr. Khouzam would have probably just told me to get a little more exercise and call him if the symptoms were still there in a month - which they wouldn’t be.
“That doctor is terrible. She should be ashamed of herself for what she put you through,” said my friend.
Another went so far as to suggest I should sue her for the mental anguish her robotic diagnosis caused me.
But despite all the added stress it caused me, I chose to look at her actions as a gift.
It reframed my perspective. Reminded me of what was important. Really important.
It also brought home to me - in a real sense - the reality that I was going to die.
Maybe not today. Maybe not tomorrow. But someday. That the reservoir of immortality I possessed as an eighteen-year-old had long ago evaporated.
At the nadir of my despair, I turned to the one place I’ve always been able to find solace, even in the worst of circumstances - literature.
I figured if I could pre-mourn my death, it would take the edge off the process and I could be acutely present during every single moment I had left. So I read about death.
I started with Dying: A Memoir by Cory Taylor. Then to The Last Lecture by Randy Pausch and Jeffery Zaslow. A friend - well, actually the Amazon algo - suggested Gratitude by Oliver Sacks, which I consumed in one sitting.
But it was When Breath Becomes Air by Paul Kalanithi that finally soothed my soul and made me believe that when my time comes, I may be able to slip the surly bonds of this earth with a grace and elegance that I don’t currently possess.
Paul was a man who had everything.
After graduating from Stanford with a Masters in English Literature and a Bachelor of Science in Biology, he attended the University of Cambridge, where he graduated with a Masters in History and Philosophy of Science and Medicine.
Then it was to Yale School of Medicine where he graduated cum laude.
Returning to Stanford, he completed his residency in neurosurgery and his postdoctorate in neuroscience.
Then, at age of 37, he was diagnosed with stage IV metastatic non-small cell lung cancer - despite never having smoked a cigarette in his life.
Complicating things even more, Paul’s wife was pregnant with their first child when he was diagnosed.
In the 22 months before he died, Paul lived every moment to its fullest and got to meet his daughter - if ever so fleetingly.
He was not bitter when he died. Nor am I for my doctor’s actions, because I am still here, breathing the air Paul left behind. And though I don’t wish to die - and will still ache terribly from the loss of my children if I do - it was because of what happened to me that I found Paul's words to his infant daughter, which prove to me that peace can be found if the worst is to come.
From Paul Kalanithi;
One person cannot be robbed of her futurity: my daughter, Cady. I hope I’ll live long enough that she has some memory of me. Words have a longevity I do not. I had thought I could leave her a series of letters – but what would they really say? I don’t know what this girl will be like when she is 15; I don’t even know if she’ll take to the nickname we’ve given her. There is perhaps only one thing to say to this infant, who is all future, overlapping briefly with me, whose life, barring the improbable, is all but past.That message is simple. When you come to one of the many moments in life when you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more, but rests, satisfied. In this time, right now, that is an enormous thing.