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November is National Family Caregiver Month
I met my husband when I enrolled in journalism courses at the University of Missouri 50 years ago. Dean was behind me in line and asked if I wanted to go out for a beer with him. I laughed and said no.
When I arrived at the registration table, the class I had to attend was full. Dean said he could introduce me to the teacher. It turned out that Dean had had dinner with him the night before and the lecturer had been writing a book about suburban journalism in collaboration with Dean’s father, an editor for a weekly newspaper chain in Ohio.
The teacher made another spot available for me in the class and I finally accepted the invitation for a beer.
After we married, Dean and I realized that it would be difficult for both of us to continue working as journalists. He decided to work in sales while I tried to get editorial jobs. We moved seven times for my job, so he had to look for a new job each time. That was never a problem for him.
He supported my career unconditionally, editing my resumes, providing technical assistance, and wearing a tuxedo as my partner at the events I was invited to because I was a publications editor. He took care of me.
After we retired, he was diagnosed with stage 4 metastatic prostate cancer. That shocked us. I always assumed that given my mother’s two breast cancer diagnoses before she was 50 and her death from lymphoma, I would receive the initial fatal prognosis.
Dean had no family history of prostate cancer. Neither of his parents, who lived to the ages of 89 and 94, died of cancer.
It was my turn to take care of him. I became her nutritionist, personal trainer, entertainer and sex therapist.
For the first two years, he was prescribed a treatment plan that included radiation and androgen deprivation therapy (ADT), which was chemical castration. These drugs eliminate interest in sex and the ability to get an erection. For my husband it was the cruelest thing.
It hurt him to lose his libido. Even though he no longer had sexual desires, he refused to consider the possibility that I might no longer have sex. We solved the problem by using a calendar where I drew hearts on the days we were intimate. That way he could follow up without letting the weeks go by. To demonstrate his intention, he bought me a black silk nightgown weeks after his diagnosis.
There were other side effects. During this time he suffered from difficulty concentrating, hot flashes, loss of muscle tone, insomnia and gained weight.
I changed our diet to adhere to the cancer dietary guidelines, which were based on vegetables and protein, and added Pilates, yoga, weight lifting, and swimming to her regular pickleball program.
To combat mental fatigue, I write a to-do list every day and set up a check-in system that we use before I leave the house. Do you have your phone, keys, hat, water bottle and wallet?
Now that we’re in fourth grade, Dean has castration-resistant prostate cancer, which means simple medications no longer work. He has had two rounds of targeted radiation therapy, but more and more cancerous spots are appearing. He undergoes chemotherapy, which brings with it a whole new set of problems. He has difficulty with dizziness, increasing fatigue and changes in appetite.
He stopped enjoying coffee or his favorite cocktail, an Old Fashioned. You have to remind him to drink water. He refuses to eat the vegetables I put in his morning smoothie.
We schedule his daily naps. I lie next to him face to face and hold his hand until he sleeps soundly.
2025
A surprising consequence of the disturbance was the disappearance of certain people without explanation. Although cancer is not contagious, some family members and old friends are no longer in our lives.
Luckily, we found community and guidance at Wellness House, a cancer support center that offers hundreds of free programs. Dean attends a support group for prostate cancer patients, where he finds comfort in talking to his peers. She also attends a support group for cancer patients in general and receives individual advice from a compassionate clinical psychologist.
I attend a support group for caregivers of cancer patients, where I sometimes hear stories sadder than mine.
The community we found helped us deal with fears about PSA tests, AMEP PET scans, and MyChart messages. We now understand that we no longer live based on assumptions. We plan what comes next.
I have two whiteboards hanging in our house. One person oversees what needs to be done: checking the will, registering vehicles so we both own them, simplifying finances, writing down passwords and talking to our two adult children about the will.
The other panel is titled “Living the Best Version of Our Lives.” We may not have many days together left, but we still have adventures ahead of us.
We plan quarterly: In October we travel to Europe to visit the three largest opera houses in the world, in December we take a stroll on the beaches of Aruba, in June Dean takes rally driving courses, in December 2026 we celebrate our daughter’s 40th birthday in Hawaii, and in May 2027 we celebrate our 50th wedding anniversary.
But cancer doesn’t take a vacation in our minds. I wake up with a stomach ache full of despair and anticipatory sadness. What will my life be like without my best friend, the man I cared for and who took care of me for two thirds of my life?
We are busy so we hardly have time to be sad. Even when we process pain, we make a conscious decision to try to have pleasure and find joy. Sometimes there are days when we don’t talk about cancer.
Dean is happiest when he’s training with his friends, playing pickleball with, playing poker virtually with his brother-in-law, and spending time with our grandchildren. He hopes to have made many memories when he is no longer with them.
Dean says he’s the luckiest, unhappiest man in the world. He is calm when he makes his decisions. He loves and was loved very much.
We discovered that you can find joy even when there is no hope. You just have to decide to look for it.
This resource was created with support from Bayer and Merck.
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