- When my husband was diagnosed with cancer, I was shell-shocked.
- My routines were upended at the same time I became his caregiver.
- I reached out to family and other caregivers for support.
People often remark on how healthy my husband is. At 82, Barry scampers up and down hills like a mountain goat and out-paddles many members of his kayak group. So it came as a shock in September when we discovered he had stage 2 lymphoma. Cancer? Unbelievable.
I was amazed by Barry’s reaction to his cancer diagnosis. He didn’t ruminate endlessly over what he could have done to prevent it, as I might have. A science journalist, he has researched and written a great deal about cancer. “Some cells mutate when they divide,” he said to me. “If they didn’t, we wouldn’t be here. It’s part of evolution.”
His diagnosis changed our plans — and our routines
Not only did we cancel an international trip when we found out, but in spectacularly bad timing, the routines that anchored my life also came to an abrupt stop. Both my yoga teachers stopped teaching, my weekly walking partner left town for the season, and as a freelance writer, I had few assignments.
In the Myers-Briggs personality assessment, I’m known as a “J,” a person who needs structure. The prospect of several empty, shapeless months was deeply discouraging for me.
It took time to adapt to being a caregiver
Because Barry’s treatment plan involved no radiation and only one chemo infusion every three weeks, we joked that he was experiencing ‘cancer lite.’ But his energy level dipped precipitously, and sometimes, I felt as though I had chemo fatigue, too. Our home situation reminded me of the beginning of the pandemic, except everything stopped for us while the rest of the world carried on.
The uncertainty was the worst part. After the oncologist and nurses repeated the mantra “only three chemo treatments” several times, we optimistically penciled in the date when we hoped to fly to Mexico, where we spend part of the year. Then one week, during an appointment, our oncologist offhandedly said, “Could be five, maybe six treatments.”
What? I fumbled for Barry’s hand under the table. “I thought you said three,” I said, trying to sound neutral.
He shrugged. “We don’t know for sure.”
I was furious at him for messing with our plans. How dare he? Of course, I was ignoring the fact that despite all the advances in the field, cancer is still an unpredictable science.
I reached out to family and other caregivers for support
As Barry’s caregiver, I felt a responsibility to be resilient, but didn’t always feel that way. My sister helped. “Call me anytime,” she said. She sent Barry homemade oatmeal cookies with a note that said, “The way I’m supporting you is by supporting Louisa.”
Through the internet, I found an online support group for caregivers sponsored by the University of California San Francisco Medical Center. It was only once a month — not enough for me — but I appreciated hearing from other caregivers about their cancer situations. We shared stories about feeling overlooked and neglected at times. Listening to them, I felt grateful that Barry’s case was relatively mild. We weren’t living through grinding years of cancer, and he wasn’t going to die (not yet, anyway!).
I also reached out to other family members. My brother-in-law, who lives with depression, told me that accompanying my sister to chemo appointments during her breast cancer a few years earlier had given him a sense of purpose and direction. Unlike me, he wasn’t perturbed at not having much of an independent life.
Barry, on the other hand, thrived on his solo time at the infusion center, chatting with the other patients. He joked that it was like flying Business Class, with reclining seats and gracious nurses attending to his every whim. Although he enjoyed introducing me to his new-found friends, he didn’t want me there all six hours, and I, too, enjoyed my “day off.”
He’s cancer-free now, but we’re still getting through it
It’s now been four months since Barry’s diagnosis, and I am indeed writing this from sunny Mexico. Barry’s latest scan showed him free of cancer, and his energy is gradually returning. And I’m back into yoga.
But I don’t have the pillowy confidence I once had, and maybe that’s a good thing. I used to brag about my health — how fit I was, how I’d live to 100 or more. Now, I’m more humble. I feel for people with cancer, and especially for their caregivers. I know cancer never happens in a vacuum. It’s a family disease, where everyone is affected, and no one is spared.
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