Some moments stick in your memory in vivid, multi-sensory recall. This blog post is dated ten years after such a moment.
Today I can still see the clock digits on my Sony desk phone when it rang at precisely 9:00 a.m. It was my primary care physician, Dr. Danny Sands. I’d had my annual physical on 12/29, and as a follow-up for a stiff shoulder, on January 2 I’d had an x-ray from one of the Boston Red Sox team physicians.
Patients around the world have told me they can relate to what happened when I answered the phone: what Dr. Sands said changed my life in an instant.
Dave, your shoulder’s going to be fine – it’s just a rotator cuff problem. But there’s something in your lung, and we need to find out what it is.
Today I know, through access to some of my medical record (right), that the radiology report about my shoulder included an “incidental finding”: something else showed up that they weren’t looking for – a 1.3″ mass, right near that shoulder.
Now we know that, by pure luck, a metastatic tumor from my kidney cancer had popped up in that shoulder x-ray. (So much of medicine, even great medicine, is uncertain.) But at the time we didn’t know what it was: “It could be a fungal infection,” Dr. Sands said, “or a scar from some old infection, or something else, but we need to find out.” He’d ordered a CT scan, and he gave me the number to call to schedule it.
I would soon learn that I had many tumors all through my body, and that they were kidney cancer, and my outlook was bleak.
Having told this story hundreds of times, I usually get through it without emotion. But honestly, this ten year anniversary is bringing me right back to those moments when the diagnosis emerged, with full emotions: thoughts of leaving my family behind, an end to my future, to my life story – it was terrifying and sad. It scared the crap out of me to realize I was probably dying: like being in a head-on car crash, in slow motion. I find myself with tears in my eyes as I recall it.
Obviously, we beat it. I depended on getting the best care possible, from the best doctors I could find (happily also at Beth Israel Deaconess), and you can believe I did everything in my power to help them save me.
Ten years later it’s clearer than ever that if we want medicine to achieve its potential, we must make the best use we can of that now-common phrase, “the most under-used resource in healthcare: the patient.”
It’s another senior physician at Beth Israel Deaconess, Dr. Warner Slack, who coined that phrase. He’s been saying it since the 1970s. And, happily, he was one of Dr. Sands’ mentors.
Here’s to achieving the best possible outcomes. Here’s to great medicine, to thought leaders, to great care, and to letting patients help.
Danny Sands says
So glad we made it through this together, Dave!
Marilyn Freeman says
I’m so glad you’ve made adequate it through…and I’ve had the opportunity to hear your story.
Li says
Agreed, patients can and do help, just have to listen and hear what is being said.
Alfred L Morgan says
Remarkable recovery and great work in your new career. Congratulations (?) on your anniversary!
Bill Reenstra says
So glad you made it and have helped so many others make it.
I was talking to a friend today about cancer and your experience. She asked me how old you were at the time, and I realized it was 10 years, didn’t know it was to the day.
e-Patient Dave says
Wellll, it depends which day you want to count. The diagnosis wasn’t even speculative until the abdominal ultrasound sometime later, and of course the underlying reality existed for some unknown time before this date.
This was the day THAT happened, though.
Peter Davis says
You’re an inspiration to us all, Dave! Best wishes!!
Leslie Kernisan says
oh wow, what an anniversary to celebrate. How wonderful this incidental finding was found. Congrats on doing truly wonderful work with your life since then.
Frank Moore says
Don’t know which diagnosis event triggered your message and chilling phone call back then, but I remember it clearly. Though you’re still “dying”, like all the rest of us, having passed the 5-yr rule of thumb for cancer survival TWICE, appears you’re good to go …YAHOO!!
The world class presentation you’ve delivered internationally (I got to witness in Houston a couple years ago) has alerted thousands to “Patient Involvement.” I expect this will lead to future success stories like yours.
I would never be able to find another “Jive Mother” friend with all your jive. Luvya! Happy New Year.
e-Patient Dave says
Frank! Sorry for the delay – somehow my notifications about pending comments got delayed!
I’m looking forward to our next meetup. I’m speaking in Dallas the morning of 1/28, in case you have nothing better to do :)