THIS NORMAL LIFE: Lessons from lymphoma

To her great credit, my doctor never used the word cancer.

A PATIENT receives chemotherapy treatment  (photo credit: REUTERS/ERIC GAILLARD)
A PATIENT receives chemotherapy treatment
To her great credit, my doctor never used the word cancer. “You have a growth on your lymph nodes,” she said at the start of a 45-minute conversation. “It’s indolent” – linguistically idle or, in medical terms, slow-growing. It’s the lowest grade of the least aggressive form of lymphoma.
Yet no matter how she sugarcoated it, my life still changed on that rainy afternoon in the hematology ward at Jerusalem’s Hadassah Medical Center. I am now a person with cancer and I will be for the rest of my life.
I’m lucky: My particular lymphoma was caught early and my treatment will be relatively mild. (How that actually plays out I can’t say yet as I don’t begin until next week.) The bad news: the cancer will almost certainly come back, although it could be another 10 years “by which time our medications should be that much better,” my doctor reassured me.
A cancer diagnosis like mine is like finding out you have an incurable, chronic but usually treatable illness.
It’s similar to HIV in that way. In the 1980s, if you were diagnosed with the virus that causes AIDS, it was almost certainly a death sentence. Today, you can live a nearly unimpaired life with the right medical cocktail.
In the first few days after my diagnosis (which came after several months of stomach pain, three ultrasounds, two CT scans and finally a biopsy), my mood cycled through repeated rounds of depression and despair followed by cognitive resolve.
I would beat it, of course. I’d maintain a positive attitude throughout, no matter how sick I might feel. I’d embrace the medication as it worked to cleanse my blood of the tumors that had arrived unbidden in my abdomen. I’d transform this misfortune into meaning, a learning experience worthy of a TED Talk.
Then I would break down again and scream in the shower: “It’s not supposed to be this way. This shouldn’t be my life!”
“Who said so?” my therapist challenged me. “Who said life is ‘supposed’ to be easy, that you ‘should’ be healthy and that everything will just go great until you drop dead someday, painlessly from old age?”
She was right. I have a long history with “shoulds.” My often unrealistic expectations – of myself, of others, of how the world should work – are my personal anti-mindful bugaboo.
My therapist and I explored where this message might come from. Perhaps it’s from my own history with illness.
This is, after all, not my first dance with a long-term, debilitating condition.
When I was 12 years old, I was diagnosed with Crohn’s disease. In a tweenage flash, my dreams for the life I “expected” blew up – at least in my imagination. I would be in constant pain from the inflammation, I wouldn’t be able to travel, no one would ever love someone disabled like me.
It’s not supposed to be this way. This shouldn’t be my life.
For a while it was pretty tough. I was on a ton of medication, including one phase where I had to take a steroid enema every night. The picture in my mind: backpacking through Europe after finishing college lugging a suitcase full of enemas.
Thankfully there was no TSA back then; I’m sure I would have been over the carry-on liquid limit.
I was fortunate then as I am now: my Crohn’s disease went into remission for nearly 30 years. Still I worried. I interpreted every upset stomach over the decades as a sign the Crohn’s was back, even as my doctor explained that everyone gets a tummy ache now and then. Sometimes I would whisper, “Is this cancer?”
Ironically, it was my vigilance and refusal to accept as my new normal the pains that would eventually send me to the ER last year that led to the ultrasound that first detected something amiss.
I “shouldn’t” have gotten Crohn’s disease then, and I “shouldn’t” have to live with lymphoma now. But I did and I do.
My life, post-Crohn’s diagnosis, turned out all right. I found someone who loves me and whom I love dearly. We raised three wonderful children – in Israel to boot. I have meaningful work, a well-received book and have traveled the world (and I never had to pack a suitcase full of enemas).
I debated whether to write about my lymphoma publicly – I wasn’t seeking any extra attention on a topic that was, until just a few weeks ago, far from my main area of interest and expertise. (I’m “supposed” to be the electric-car guy.) But I figured I write about everything else – religion, relationships, cannabis and sex; how could I not share that which is most pressing in my life?
I’m not sure how I’ll feel in the coming months, but if there’s anything I’ve learned so far in the short time I’ve sat with this unexpected diagnosis, it’s that with cancer, as with life, there are no shoulds.
The writer’s book, Totaled: The Billion-Dollar Crash of the Startup that Took on Big Auto, Big Oil and the World, is available on Amazon and other online booksellers.