Six years ago, my husband Devin was diagnosed with Acute Lymphacytic Leukemia. In the midst of Devin riding the roller coaster of relapse and remission, I began to write. I had no other outlet for what I was feeling at the time, nor did I have the energy to seek one. Three years later, Devin succumbed to the disease though we were the ones who were supposed to “make it.”
To begin with, we had the love and support so often associated with success in cancer diagnoses. When Devin was first diagnosed, we were living in Oregon, 2000 miles away from our home state of Ohio. Devin’s parents had recently retired and lived in Oregon only three hours away. My parents too were retired and spent weeks at a time with us, just to be near. Socially, Devin was well-liked, strong, healthy and generous with his time and energy.
Second, Devin and I had been astute enough, and financially successful enough, to invest our salaries and bonus monies in life insurance policies and other long-term strategies. Eventually, due to his rank within the company and his past earnings, the disability checks we received during Devin’s treatments allowed us to balance our checkbook.
Alongside those first two aspects, we had a reason to get up in the morning and his name was Davis. Despite his premature birth, Davis had turned out healthy and became our inspiration for everyday living.
Next, Devin was being treated under the watchful eye of Dr. Keith Lanier in Portland. Later, after moving back to Cincinnati due to a job consolidation, Devin had been referred to the practice of Dr. Philip Leming. When the insurance company considered dropping this physician’s group from their coverage, Dr. Leming wrote a persuasive note to convince the company otherwise.
In conjunction with the above, Devin had access to stellar insurance coverage. When we did embark on a bone marrow/stem cell transplant, we were presented with the option for Devin to undergo this process in the Pacific Northwest at a “blue chip” facility – Seattle’s Fred Hutchinson Cancer Research Center – www.fhrcrc.org. As Dr Leming put it at time, “That’s what they do, and they do it well.”
Finally, we had attitude. Devin maintained a positive outlook on life, this disease, and how this could help make him a stronger person – I quote from his diary – “God has a plan for me in all of this – and each day (it’s only been 5!) I learn more about what the plan might entail.”
Outside of the disease itself, the above are crucial factors in the successful treatment of a cancer patient. But there are instances when insurance, caregivers, money, love, and medical care simply do not matter. Ours was that instance. The only thing that would have mattered at the time was a cure.
It took six years of writing my book, I’ll Be in the Car, (www.IllBeintheCar.com) to accept the fact that we had all the means for success and in the end, it did not matter. I’ll Be in the Car is the story about Devin and me. But more so, about how our lives were impacted. I wanted others to witness that we fought over money, in-laws, child-rearing and lawn-mowing, in the midst of fighting leukemia. I wanted others to know even during Devin’s down days, we held bridal showers, went on vacation, and watched movies and read Tuesdays with Morrie, before the notion of Devin dying had even crossed our minds.
Two weeks after Devin died Davis and I began our journey of fundraising for the Leukemia and Lymphoma Society (www.lls.org) by attending our first Light the Night Walk, surrounded by more than fifty family members, friends and neighbors who were still in shock and needing to grieve. Over the years, we continued our participation, walking with friends, sisters and brothers and finally just Davis and me.
Two months ago, I married a wonderful man whose first wife also died of cancer. He brought three motherless daughters into our marriage. The other night as a family, we had been out spooking the neighborhood, leaving tricks and treats and laughing all the way home. Later, while putting my son to bed, I saw that he had been crying. “Davis what’s the matter?” I asked. And he just burst out, “I didn’t get to say goodbye to Dad.”
This is six years later. And that one moment sends me backwards in time, wishing there had been a cure. If we cannot have a cure, if we cannot raise millions of dollars, then we must raise eyebrows while finding other means of comforting those affected. I speak out today to tell the story of little boys who still miss their dads, of young women who still grieve for a mom I can never replace. To talk about mothers and fathers who still yearn to see their son walk through the door at Christmastime. And to be the voice for friends and lovers, husbands and wives whose light we carry inside.