November is National Family Caregiver’s Month.
I met my husband while I was registering for journalism classes at the University of Missouri 50 years ago. Dean was standing in line behind me and asked me out for a beer. I scoffed and said no.
When I got to the registration table, the class I needed was full. Dean stepped up and introduced me to the instructor. It turned out Dean had had dinner with him the night before, and the man had written a book on suburban journalism that included Dean’s father, a publisher of a chain of weekly newspapers in Ohio.
The instructor made room for me in the class, and I wound up going out for that beer.
After we got married, Dean and I realized it would be difficult for us both to stay in journalism. He decided to go into sales, while I pursued editing jobs. We moved seven times for my work, requiring him to find a new job each time. He never minded.
He championed my career, edited my resumes, provided tech support and wore a tux as my plus one to events I attended as an arts editor. He took care of me.
After we retired, he was diagnosed with stage 4 metastatic prostate cancer. We were dazed. I had always assumed I would receive the first life-threatening prognosis given my mother’s two bouts with breast cancer before she turned 50 and her eventual death from lymphoma.
There was no history of prostate cancer in Dean’s family. Neither of his parents, who lived to be 89 and 94, died from cancer.
It was my turn to take care of him. I became his nutritionist, personal trainer, cheerleader and sex therapist.
For the first two years, he was prescribed a treatment plan of radiation and androgen deprivation therapy (ADT), which is chemical castration. These drugs eliminate interest in sex as well as the ability to have an erection. For my husband, this was the cruelest part.
He mourned losing his libido. Despite the fact he no longer felt desire, he refused to give up on sex for me. We navigated this by using a calendar where I would draw hearts on days of intimacy. That way he was able to keep track and not let weeks pass. To declare his intent, he bought me a black silk nightgown weeks after his diagnosis.
There were other side effects. During this time, he suffered from mental fog, hot flashes, lost muscle tone, insomnia and weight gain.
I changed our diet to follow cancer nutrition guidelines — plant- and protein-based — and added pilates, yoga, weights and swimming laps to his regular pickleball practice.
To counter the mental fatigue, I write a to-do list daily, and created a check system to use before he leaves the house. Does he have his phone, keys, hat, water bottle, wallet?
Now in year four, Dean has castrate-resistant prostate cancer, meaning the basic drugs no longer work. He’s had two rounds of targeted radiation treatment, but more spots keep popping up. He’s undergoing chemo, which brings a whole new set of woes. He fights dizziness, increasing fatigue and appetite changes.
He stopped enjoying coffee or his cocktail of choice, an Old Fashioned. He needs to be reminded to drink water. He resists greens, which I put in his morning smoothie.
We program his daily naps. I lie down next to him, face-to-face, holding his hand until he falls into a deep sleep.
A surprising consequence of the disease has been ghosting. While cancer isn’t contagious, a few family members and long-time friends have disappeared from our lives.
Fortunately, we found community and counseling at Wellness House, a cancer support center that offers hundreds of programs for free. Dean attends a prostate cancer support group, where he finds comfort in conversations with peers. He also goes to a general cancer group and receives individual counseling from an empathetic clinical psychologist there.
I frequent a cancer caregiver support group where I sometimes find stories sadder than mine.
The community we’ve found has helped us deal with the anxiety before PSA tests, PSMA-PET scans and messages on MyChart. We now understand we no longer live in the land of what ifs. We are planning for what’s next.
I put up two whiteboards in our house. One tracks what must be done: Revise the will, register the vehicles in both our names, simplify finances, write down passwords and have “The Will” discussion with our two adult children.
The other board is titled “Living Our Best Lives.” We may be running out of tomorrows, but we still have adventures to take.
We plan in quarterly increments: An October European trip to experience three of the world’s great opera houses, walking Aruba beaches in December, rally driving school for Dean in June, celebrating our daughter’s 40th birthday in Hawaii in December 2026 and making it to our 50th wedding anniversary May 2027.
But cancer takes no vacation in your mind. I wake up with a stomachache of despair and anticipatory grief. What will it be like to live without my best friend, the man I’ve cocooned with for 2/3 of my life?
We keep busy so we have little time to wallow. Even as we pass the tissues, we make conscious decisions to find pleasure and laughter. Sometimes we have a no-cancer-talk day.
Dean is happiest exercising with his pickleball gang, playing online poker with his brother-in-law and spending time with our grandchildren. He hopes to leave them with many memories.
Dean calls himself the luckiest unlucky guy around. He is serene with his choices. He loves and has been loved deeply.
We have found that even when there is no light at the end of the tunnel, joy can still be found along the way. It just takes resolve to look for it.
This educational resource was created with support from Bayer and Merck.
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