Being a cancer caregiver was one of the most challenging and sweetest roles I’ve ever played.
The challenging part was in the beginning. Gary, a data processing manager, had been unemployed for two years when the company he worked for was sold, and then the terminal diagnosis was dropped on us from a high-flying bomber we didn’t see coming. My husband kept his sense of failure as a man to himself for the first full year.
After he finally admitted what was going on in his head, we determined to create memories, live more fully, and step outside our comfort zones in order to give back. While we could.
Being an obsessive list-maker, if given the assignment to sum up tips from my cancer caregiving years—and if the assignment required an alphabetized list—it would look something like this:
None of us are exempt. But we do get to choose our attitudes in how we live with and beyond the diagnosis, the heartbreak, the loss of an irreplaceable person.
After starting chemo, my husband, Gary, decided he would go bald on his terms. Our niece was assigned the job of shaving his head. But first, a little fun: An Oregon Ducks “O” was sculpted on the back of his head in anticipation of the afternoon’s football game.
The best thing I did as caregiver was come alongside Gary. Not sitting in the bleachers cheering him on; but in the game alongside him, running interference, picking him up when he got tackled, letting him console me when I fumbled.
Yes, there are too many sudden, tragic, senseless deaths. But standing watch as a loved one dies can be a sacred and sweetly sorrowful event with patient and caregiver saturated in peace that defies all human comprehension. I know this to be true from experience.
As the doctors were honest with us about the approach of death and their goal to keep Gary comfortable, there was a lighter spirit in my husband. End-of-life discussions are difficult, but essential.
Our faith helped us weather the hard road. Yes, we struggled with self-pity and anxiety, and maybe even some anger – God, why? If there hadn’t been a sense of purpose that eventually settled over us, this journey would have been devastating. And yet it wasn’t. In its place was meaning and deep peace. Because Jesus Christ was central to the equation.
We can count our losses. Or we can count what still remains. And the list of what remains is quite long: our marriage, our kids and grands, extended family and friends, a place called home, this one more day together.
“If you didn’t get your hopes up so high, you wouldn’t be so disappointed,” said the analytical, computer-geek man I married. But I love that he matched my hope during the cancer years.
Cancer ignited a passion to live the remaining years of our lives in a way that mattered, and to encourage others to do the same.
I learned to slow down and pick up simple things that could be enjoyed in the same room with the man in the hospital bed – a good book, knitting, playing Words with Friends. Quite an accomplishment for someone who gets her sense of worth from her accomplishments (pun intended).
A chain bearing two small sterling silver tags is my most prized piece of jewelry. The tags are engraved in Hubby’s chicken scratch handwriting: “I love you.” They remind me that I was once loved by a most astonishing, courageous, wry-humored man.
Gary and I worked and saved for someday until cancer taught us that someday is now. Cancer prodded us to explore the red canyons of Utah; navigate the NYC subway system; discover New England’s back roads in the fall; laugh from mountaintops in Oregon, Wyoming, Colorado. It probably should go without saying that we ought to live while we have life.
I scattered my husband’s ashes at the top of one of our favorite trails. Ceremony. It’s not something we invent to mark milestones; it’s critical for remembering this moment, cherishing this story, celebrating this life.
Getting outdoors helped Gary and me deal with the stress of cancer. There’s nothing like summiting a mountain, or hiking along streams rushing over boulders for a sense of well-being.
Hubby was the analytical sort who first saw all that could go wrong. He called himself a realist. “No, honey, you’re a pessimist.” He’d grin his cute grin and meet me halfway: “OK, I’m a realistic pessimist.” When it came to cancer, though, I loved that my realistic pessimist husband faced it with optimism.
Gary and I didn’t think we should sit back and hope cancer treatment was all he needed. We were a proactive, engaged team, and it was the right attitude to carry.
Quality of life
Gary lived several years longer than originally projected, and his quality of life was incredible for someone with a terminal diagnosis. He often said, “It’s up to me how I’m going to live the rest of my life.”
We established a non-profit, drafted a tag-team presentation, and dared to think there would be audiences across the country who would be interested in our proactive cancer message. Risky.
This profound thought from Jim McMahon, ex-professional football player: “Risk-taking is inherently failure prone. Otherwise, it would be called sure-thing-taking.”
I would never wish our wilderness journey on anyone. But because of the hard road, I am kinder. More compassionate. I carry stronger faith. I spend more time noticing the wealth of blessings that make up my routine days. And quite frankly, I like this person better.
It takes a full team to win championships. Not only did we have a full cancer team comprised of good nutrition, stress management and finding meaning, but we plugged into community and had a team of unstoppable people who helped carry our load.
Two co-workers came to visit one day. We chatted, Gary in his hospital bed, my girlfriends sunk into the sofa. After a while, one of them said, “It’s so peaceful here.” Does that strike you as odd? We’re sitting in a room with a man dying of cancer and my friends linger long because it’s peaceful. Priceless gift.
Gary and I combined our skills and passions to establish a non-profit and publish a book of cancer heroes. But what happens when a vision dies along with a loved one? Here’s the blazing answer: The vision can be repurposed with a fresh destiny to accompany the new season.
“Doesn’t this get monotonous?” Gary asked one morning after I changed his dressings, drained his bags, flushed his tubes. No, never my darling. He knew I loved doing life with him. He knew because I told him. Frequently. Words are powerful.
If your doctors aren’t on your team, it’s time to replace them. Gary and I didn’t hire any of the physicians who didn’t recognize the importance of our cancer team – nutrition, physical activity, stress management, etc.
Yes, thank you.
Hubby’s cancer (and our daughter) taught me to say, Yes, thank you.“People want to help in meaningful ways, Mom,” lectured Daughter Summer. “You need to let them.”
Repeat after me: Yes, thank you.
There are a zillion good things that came out of the hard. If Gary hadn’t been unemployed, for example, I wouldn’t have given up my work at a non-profit and found a job with healthcare benefits at the cancer center. And we wouldn’t have met so many crazy kind, extraordinary co-workers and cancer community members who surrounded us with love and compassion in those last weeks of Gary’s life. And that’s just one of a zillion good things.
This insight from a very wise oncology social worker: “Survivorship happens for caregivers, too.”
Gary didn’t survive his cancer. But I did. And my husband would want to know that I’m still living forward and fully in the moment.
Ironically, those last years of our marriage—the cancer years—were the best. Because we planned more fun and adventure.
We took more risks, stepping in front of audiences to share our story.
We paid attention to the moments that made up a good life, even with cancer in the picture.
Now as a cancer caregiver-survivor, I’m still living what was our unofficial mantra for the last years and months of Gary’s life: “Relish this moment. Drink in this simple joy. Whisper gratitude.”
Marlys was the caregiver of her husband Gary who lived ten years after being diagnosed with late stage prostate cancer. After his diagnosis, together they founded a non-profit called Cancer Adventures, sharing their story with groups across the country. After Gary’s death in 2014, Marlys has continued to share the underlying theme of her and her husband’s story: How challenges are a part of life but you have choices. She has a passion for helping people navigate life’s challenges, having negotiated a few herself.