Talking to Kevin
Three years ago, Kevin, 58, was diagnosed with lymphoma. During a swim practice, he was suddenly out of breath. Tests showed blood clots in his lungs and pre-cancerous changes in his blood. Later that year, he woke up with banana-sized lymph nodes on his neck. The pre-cancerous blood had transformed to lymphoma. He underwent chemo; for two recurrences, a bone marrow transplant, then immunotherapy. The last treatment ended two months ago.
Through the ups and downs, he’s handled himself – and us (family, friends and acquaintances) with equanimity. I’m humbled by what I’ve learned from him.
On living with lymphoma:
Kevin: Maintaining normalcy is paramount.
He continued to work. Took his laptop to chemo. Distraction helps. The treatments tire him out, during and for weeks afterwards, but he shows up for swim practices.
During the first round of chemo, he got married (planned before the diagnosis). The doctors timed it so he could marry during the beginning of the cycle when he was less sick. During the chemo-free week, he went on his honeymoon. Kevin remembers ripping off the anti-nausea patch, putting a suit on, running to his wedding.
On unsolicited advice:
Kevin: “Thank you, I’ll look into that.” But he’s not about to turn into a vegetarian or vegan. More importantly, he’s never done an internet search for information – be it prognosis, staging, alternative treatments. Kevin: “[I] don’t know what’s good and bad information out there. I trust my doctor. He will tell me what I need to know.”
On people:
Some were shocked. Not knowing what to say, they’re uncomfortable, try to change subjects.
“All you have to say,” he suggests: “Hey, Kevin, I’m there for you.”
But don’t ask, “Why do you get it?”
Kevin: “I don’t know ‘why me?’ I don’t think ‘woe me.’ Somedays I want to talk about it; somedays I don’t. It can be exhausting.” People can “listen more.”
Another thing people should avoid saying: “I know what you’re feeling.”
He read a blog by a career oncology nurse, a colorectal cancer survivor, titled “Dear Every Cancer Patient I Ever Took Care Of, I’m Sorry. I Didn’t Get It.” People think they know, want to relate, know somebody else with cancer. Kevin: “If you’ve never been diagnosed with cancer and had chemo – you don’t know.”
On nice things people do:
Giving him rides without asking any questions.
And the nicest thing: A random text message that says “How are you feeling today?”
Kevin: “You know people are thinking about you.”
On supporting his family:
When he got married, he assigned financial and health powers of attorney.
What helps his wife and children – his trust in his doctors reassures them more than anything else. Kevin: “I believe in my doctors. [When] they tell me there’s a recurrence, they always have a plan … I can do this.” His health team is proactive in contacting his insurance company to approve tests and treatments, signed him up for clinical trials.
He hopes his children have learned one thing: “Always, always, always have health insurance.” His medical bills topped millions of dollars. Without health insurance, he wouldn’t be able to maintain his current lifestyle.
On worse days:
Sit around. Nothing to do. Mind wanders just thinking about things.
First time he went in for his chemo, he came to a waiting room full of face-masked people hooked to IVs, being wheeled around, looking sick. He panicked and wondered aloud, “Will I walk out today?” It’s been a long journey since then.
On today:
Kevin: “I am living – 100%.”