'Hi Scott, it's Don from Reno, call me back as soon as you can.'

I haven’t told this story publicly before. But I’ve been thinking a lot lately about how our healthcare system does and doesn’t work for us, and figured it might be of some use to share.

In 2017, I went in for an annual physical with a One Medical provider. We covered some run-of-the-mill health topics, she ordered the usual labs, and on the way out the door ¹ I asked, “hey, by the way, I have this bump, want to take a look?” It was a painless knob-like structure in my left glute. She asked a few questions, how long had it been there, palpated the thing, and said, ominously “hmph.”

A week later, I was paying cash for an MRI at an imaging center², the results of which were inconclusive but not reassuring.

And shortly after that I was taking a very slow train ride down to LA (I took the scenic route to give myself some time to reflect) for a biopsy at The City of Hope.

City of Hope is a familiar place for me. My dad is a hematologist / oncologist there, he helped start their bone marrow transplant program³, and is still seeing patients and doing research. I attended many BMT reunions growing up.⁴ But I never expected to be back as a patient in my thirties.

A few days after the biopsy, back home in Oakland, I got a call in the evening. In my voicemail it was transcribed “Hi Scott, it’s Don from Reno…” I remember thinking “Do I know anyone named Don…from Reno?” But I don’t remember hardly any of what he (my surgeon, Dr. J. Dominic (Dom) Femino) said when I called him back. Some sound waves in the ear are all it takes to trigger a whole ancient apparatus of fear, a flood of cortisol and adrenaline. Mortal terror is quite a trip.

What I had, specifically, was a life-threatening sarcoma, a type of soft-tissue cancer. A “myxoid liposarcoma with round cells,” to be specific, a moderate-to-highly aggressive type characterized by a translocation in which parts of chromosomes 12 and 16 get swapped. What causes this? Who knows. Maybe a stray cosmic ray strike during cell division a few years previously. Just a bad roll of the dice.

Because sarcomas can grow for a while without causing obvious symptoms, many are caught late. I was lucky. Mine was shallow enough to notice, I was in the habit of annual exams, and I (only barely) thought to mention it. I was also extremely fortunate to have family expertise and to be in the care of sarcoma specialists from the beginning.⁵

PSA: if you ever notice a mass of any kind, especially if it’s unilateral/asymmetrical, and even more especially if it’s growing slowly but steadily, get it checked out immediately.

So off I went into Cancer World. A diagnostic workup, MRIs and CT scans to check for metastasis, fortunately finding none.⁶ The sarcoma team at City of Hope debated whether I ought to have pre-surgery radiation (“neoadjuvant”) or post-surgery (“adjuvant”), and wound up recommending the former. I kinda wanted the damn thing gone ASAP, so was somewhat disappointed by this.

But I did as they proposed, and scheduled my five weeks of radiation at Alta Bates. Under the care of the excellent Dr. Rembert⁷ and a great team, I had a form of radiation called “IMRT”: intensity-modulated radiation therapy. A brilliant innovation. Inside the machine, dozens of tungsten leaves, each about a centimeter wide, move independently to shape the radiation beam in real time. They do a kind of dance, shaping the beam around the tumor’s contours to maximize the dose to the target while sparing the surrounding tissue. My tumor shrank considerably under the influence of the radiation. Lucky again, to have such radio-sensitive cancer cells.

I opted to have my surgery in Los Angeles, to have support from family during the recovery period. So Don From Reno performed my surgery to remove what remained of the tumor. I remember seeing quite a few amputees in the waiting room, many of them young. Sarcoma isn’t the most well-known of cancers, but I’ve known about it since I was a kid. It always struck me as especially horrifying, sometimes requiring amputation to cure. This still happens, though much less often than it used to. Without modern oncology, and with further progression before discovery, my cancer might have required hemipelvectomy to remove (Google this with caution if you’re squeamish).

So I count myself fortunate that the extent of my complications were a hematoma and a reluctant-to-heal wound that required minor second and third surgeries (irradiated tissue is vexing for wound healing). During the third surgery, the power at the hospital went out, and the backup generators failed to start. Fortunately, my combat-veteran anesthesiologist had talked to me beforehand and proposed lighter sedation than had been originally planned. Lighter sedation meant no intubation, and no ventilator that otherwise would have suddenly stopped mid-surgery. Another stroke of luck. I would have been fine, of course — manual ventilation would have done the trick — but still, glad to have avoided that hiccup.

And all of this was a near miss. If I hadn’t been doing annual PCP visits…if I hadn’t remembered to ask about the thing…if my PCP hadn’t raised an eyebrow at it. I can easily imagine alternate universes where my cancer was diagnosed much later, maybe too late to be fully remediated. I’m lucky to have had access to a medical system with extraordinary technical capabilities. But to benefit from those capabilities, I had to be an active participant. If I’d been less savvy or more passive, I might not be alive today.

This was 8 years ago. I’ve had annual CTs and occasional MRIs since then. Other than a minor scare on a chest CT, a little wrinkle in my lung that proved to be ephemeral when repeated a few months later, it’s been smooth sailing since then. All I have to show for it now are three tiny tattoo dots (they’re used to align the radiation beam), a nasty scar, a meditation practice that has transformed my life for the better, a keen awareness of the fragility and contingency of human lives, and a deep gratitude for modern medicine.