When My Doctor Said, 'We’re Lucky We Found the Cancer'


A few weeks ago, the day I closed on my new house in fact, I received a call from my doctor with some bad news. It turned out, he had run a couple of unusual tests, tests he said he ran once a decade. Against all odds, I had a rare kind of cancer that was incurable but treatable. One odd thing the doctor said was, “We’re lucky we found it.” A lot of people, he said, died of this cancer without ever knowing they had it.

So, I’ve been writing poems — even before this new cancer diagnosis — about luck. I think it’s the beginning of a new manuscript. I’ve been thinking a lot about the way we think about luck, both good and bad. Being in the wrong place at the wrong time, celebrating Bastille Day only to be run down by a terrorist, or having a scan that incidentally discovers metastasized cancer in your liver on an ER run for stomach flu — we can’t control everything or protect ourselves from even the worst things we can imagine.

Cancer was not on my list of things to do. But here it is.

The next step for me is a radioactive scan to find out exactly where the cancer has spread. It also will be a good test for the main chemo drug used for carcinoid syndrome, sandostatin. (Though they are working on even better chemo drugs, sluggishly working their way through the FDA’s non-efficient system of cancer drug approval.) Then it will be a dose of monthly chemo for probably the rest of my life.

My kind of cancer, neuroendocrine carcinoid tumors, and the associated carcinoid syndrome is rare, but not too rare — enough to have its own foundation and studies. As a kind of cancer, it’s not curable but not fast-moving, so in a way, lucky, right? And some people with carcinoid syndrome don’t get diagnosed until after the autopsy once they’ve died. So again, it’s lucky they found it after the seven or eight years they think it’s been hanging out in my body, causing the strange but sort of common medical symptoms (stomach pains, hives, fatigue, weight gain) that have been resisting regular treatments and confounding doctors. And now I’ll get treatments that will probably help the symptoms, hopefully more than the side effects of the chemo will hurt me. I have insurance and a supportive husband and at least a couple of doctors who care if I live or die.

Lucky, right?

An article from a Johns Hopkins study came out about a year ago that doctors and scientists and journalists alike scrambled to defy because the message was so disturbing. The message was: two-thirds of all cancer cases are caused not by lifestyle or environment or even genes, but by bad luck. (Here’s a quick rundown from “The Guardian’s” original article.) Well, people were outraged, because the message — that you can’t really dodge cancer by staying thin or exercising or eating right or wearing sunscreen or  living in the right place — is pretty scary when you think about it.

It means we don’t have control over our health, often equated with virtue in our “all-American-health-and-thinness-and-lifestyle-obsessed” culture. I mean, I’ve been eating organic and mostly whole foods for ten years and gluten-free and dairy-free for about seven of those. Did that help or hurt or do anything at all? Do superfoods just feed your tumors faster or do they help destroy them? (Luckily I have a holistic oncology support doctor I’m seeing next week to help answer some of these questions!)

I may have some relatives — back farther than my grandparents — who died of my kind of cancer, but didn’t die young. My father, working to help develop what became the CT scan machine at Yale when I was born, was exposed to all kinds of radiation for sure, but he is still pretty healthy at 75.

Lucky?

I grew up in Oak Ridge, the home of a bunch of odd cancer cases and elevated cases of things like childhood leukemia and thyroid cancer, where I undoubtedly— as you can read in The Robot Scientist’s Daughter — was exposed to radioactive elements in the milk, vegetables and fruit I ate from local sources as a kid from age 3 to 10, including our own garden in an area less than five miles downwind of Oak Ridge National Laboratories. So, was developing this cancer inevitable, part of my genes and my environmental pollutant exposure? Or was it luck?

It’s a question that probably can’t be answered. The idea that cancer may descend on us out of the blue, and there is nothing we can do to avoid it is frightening. But I think mortality is sort of like that. We don’t get to choose or control what happens to us. I mean, we can definitely hasten things by say, smoking meth and racing around ignoring street signs and brandishing guns randomly. (I do not endorse that behavior, as a legal reminder.)

But in many ways, our ending is out of our control. Whether or not we can make peace with that idea, is what we can strive for. Though we can control how we respond to things still, like the dehumanizing world of medical treatment, or people’s tendency to avoid people with disabilities or cancer, as if they are catching, or the anxiety and pain provoked by our diseases — and our insistence on being more than just the disease, on living life as engaged as we can be with nature, with other people, with improving not only our own lives but the world around us (like that little kid that started Alex’s Lemonade Stand for childhood cancer victims, a little cancer heroine if ever there was one).

For now, it’s enough to just walk out in the sunshine and remember the stellar jays and hummingbirds, even the chaos of the new house renovation, are all part of the build and fall of the world around us, part of our own body and soul’s chaotic personal journey through the universe.

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

JOIN THE CONVERSATION

Related to Neuroendocrine Tumor

Clockwise from top left: My final chemo day; my first walk after surgery; my final radiation day; my first post-chemo haircut.

What I’ve Realized After Spending Over a Year Under a ‘Cancer Cloud’

In September of 2014 (soon after my 40th birthday), I felt a small lump in my breast. I made the proper calls and arrangements for testing, but I kept convincing myself it was “just a cyst.” However, after a mammogram, ultrasound and biopsy, doctors confirmed my worst fears: I had Stage IIB triple-negative breast cancer, [...]
Close-up of gloved hands passing the surgical scissors

No, an Appendectomy Won't Cure Pseudomyxoma Peritonei

When people learn I survived cancer of the appendix, they often ask if I just needed an appendectomy. If only. Unfortunately, the vast majority of appendiceal malignancies are discovered as stage 4, when it’s called pseudomyxoma peritonei (PMP). Once found, tumors have burst through the appendix and spread to the outsides of various organs within the abdomen, and [...]
The author playing baseball

The Support System That Helped Me When I Was Diagnosed With Testicular Cancer

My story is about a fight. Recently I learned I was in for the fight of my life. In my corner I already had my beautiful wife, Tammy, my family and a few close friends. Once Pete Brown, who trains at Adrenaline Training Center, heard about my fight, he offered to train with me at [...]
mom and daughter walking on trail

If There's Ever a Time My Daughter Feels Without Me, Please Tell Her This

I put her in her bed early tonight, because I’m tired and potty training is hard. I got in the bath and scrolling through Facebook, I read a post about a mother whose little boy had passed away. Again I thanked God that cancer happened to me and not her. You may not realize it because [...]