I am back to writing in honour of the late Dr. Paul Kalanithi, a neurosurgical fellow at Stanford who died in 2015. His book, When breath becomes air, will be released on Tuesday, January 12. This book is about his life and his death, at 37 years old with a new baby, of a rare lung cancer. This New York Times review of the book remarks, "By the time he was ready to enjoy a life outside the operating room, what he needed to learn was how to die."
I think about the years and years of play I sacrificed for my education and my career. And finding space for play - to enjoy my life - is now a spiritual imperative. If I was to die of a rare cancer next year, like Dr. Kalanithi or my friend Jen Young, it would all feel so profoundly unfinished. And it would feel like that because I have a lot of banked play time that remains unused in my esoteric life account.
Over the last several years, I've had a voyeur's view into the lives of people confronting terminal illness. The hoops of medical training dropped me squarely into the existential sorrows of perfect strangers as they realize that these days or months are their last. It feels great to help where you can, and utterly, outrageously sad when there is nothing to do.
But just before Christmas, I found out a truly adored member of my family has two large tumours, likely representing an aggressive cancer. I don't want to share more details because of privacy and because that's not what this is about.
From the perspective of a general practitioner, this is how a cancer diagnosis is, under ideal conditions, made:
Step One: "Doc, I've got this thing...":
A patient comes in with a new symptom. You explore this symptom and put it into context to see if there are any red flags. Red flags like unintentional weight loss, early satiety, uncharacteristic mood changes, night sweats and a few others. If the situation seems benign, you attempt to deal with the symptom as a stand alone issue but write a note in your records to ask about it the next time you see the patient to ensure the situation hasn't changed.
Step Two: This thing needs to be looked at.
If the red flags show themselves, you order preliminary tests, including labs and images, to get a sense of what exactly you're dealing with.
Step Three: Oh, this thing is a growth, and it may be dangerous.
This is where patients move from "I probably have SOME cancer" to "I definitely have THIS cancer. " Normally, if these preliminary tests yield evidence of a cancer, or other nefarious process, you package up your assessment and refer to the appropriate specialists based on where you think the diagnosis will eventually land. That is, if you found a bladder tumour on ultrasound, you send your patient to a urologist. If you found a breast mass, you send the patient to a general surgeon who does breast surgery. In Ontario, in some regions, you just send your patient to a Cancer Centre and the care teams are built there. Step 3 should happen in about 14 days.
Step Four: This is what this thing is and this is what we can do about it.
Further testing (i.e. advanced imaging, biopsies) and treatments (i.e. chemotherapy, radiation and surgery) are arranged and patients are provided with some version of a prognosis. These represent the seven circles of hell we put patients through in order to keep them alive. Sometimes. Reports from early reviews of Dr. Kalanithi's book say that I - and all doctors - should be more aware of these circles of hell. Of course, rare cancers or indeterminate results follow somewhat swervier pathways. And for kids, the rules are different again.
But sometimes this all gets screwed up.
Sometimes letters of referral go missing. Sometimes natural disasters happen. Sometimes specialists have to take time off. Sometimes there are holidays that make everything take 200% longer than normal.
When things get screwed up in Step 3, it can be such a bad scene. We are so bad at uncertainty when the array of options are miles wide: benign nothingness to palliation. People panic. They go to the ER asking for the system to move, to do its job way faster than it can. They don't cope. They realize how unready they are to die.
And for people dropped unfortunately into this state of upheaval, all I can say is this: Enjoy your life.
The next months or years will feel like you're living according to someone else's rules: appointments, wait times, follow up testing, IV lines, keeping away from children during flu season, modifying your home for reduced mobility, pain medications and unpredictable bowel movements, catheters and transplant lists and, naturally, an endless stream of nurses, technicians, medical students, residents and staff physicians. Some of these people will be brutal. Some will be excellent. You can't control that either.
So enjoy your life.
If you're fixating on results that are supposed to come on a certain day, don't. You can't change it.
Enjoy your life.
Actually though, you don't know what the next cancer milestone holds and the panic doesn't help. I know you don't want the last year of your life to feel like a stream of woebegone sound and colour. I know you want to feel good things, smell rich smells, see gorgeous sights and hear laughter and joy. You just spent your entire life building these experiences so you better make sure you take them at the end.
None of us are entitled to time. We didn't earn it. It was just given to us, at random. Some of us get more. Some of us get almost none. There is only one thing to do with it: