Illustration by Jon Krause
The bruises covered both of his arms, from the tops of his hands to his wrists and up both forearms, the result of nurses' futile attempts to find a vein. Sharp cheekbones pushed tightly against his waxy, pale skin. His once healthy frame now only carried the weight of his skin, bones and a hospital gown. The gown bulged at his waist from a full ileostomy bag and a rectal tube that emptied into a bag attached to his knee. It seemed that my husband's body had been violated in every way possible. We were beginning year four of our "dance" with cancer in the all-too-familiar hospital oncology unit.
The dance had started as a battle, but we soon learned that being young, fit and ready for a fight is insufficient armor. Cancer is undeterred by age, status, wealth or fitness level. After realizing that, we waged on with the battle and battle talk anyway. That is what is expected.
Steve had been diagnosed with stage IV rectal cancer at age 46, in the midst of training for the Ukrop's Monument Avenue 10K. It was February of 2008, just months after he lost his mother to non-Hodgkin's lymphoma. My role was clear: to be his caregiver, advocate and ally and help him through the difficult process.
As my world spiraled out of control, I fought to keep the upper hand. I became studied in his treatments, medicines, prescriptions, side effects, doctors, protocol and progress. I managed his appointments, insurance and food intake. I helped him cope with his fears and fluctuating emotions. It was an overwhelming job, but one from which I did not shy away.
I come from strong Midwestern stock. I was born to be a caregiver. Raised during the idyllic "wonder years" of the late '60s and '70s, I was the middle child of five. My mom, a child of the Depression, was raised on a farm, taking care of her younger siblings. I grew up watching her care for my dad during his heart surgeries and always being there for family, friends and neighbors. In turn, I eagerly took on the duties of watching and taking care of my younger brother and sister. Little did I know that years later, I would begin a new chapter of my life by taking care of my sick husband.
By the time Steve's cancer was diagnosed, it had spread to his liver. Because he was otherwise healthy, the doctors recommended an aggressive approach. We both signed on, ready to fight. But slowly, over the course of three years, we realized that for him, the chemotherapy was more devastating than the cancer. We also learned that pursuing what looked like the best odds often meant sacrificing humanity and dignity.
During Steve's 37 months of treatment, he had an estimated six weeks of chemo-radiation, 13 hospitalizations — six of them involving surgeries, including an emergency surgery on a Christmas Eve — 26 chemo treatments (including one that led to a devastating rectal abscess), 30 packs of depends, 60 ileostomy-bag changes, 30 rectal irrigations and six months of wearing a rectal bag.
I learned that with this kind of long-term illness, simply putting oneself in the hands of the hospital and doctors was not an option. I became familiar with the ins and outs of the procedures, the names of his nurses, the floor protocol. I developed relationships with nurses, dietitians, doctors, social workers, chaplains, volunteers and staff to ensure that he had optimal care. In a professional manner, I respectfully asked questions and challenged treatments.
This past December, Steve was given a chemo regimen that was intended to help extend his life, not cure him. The side effects landed him in the hospital with his body badly beaten and his spirit forever damaged — a shadow of his former self. After his second hospitalization that month, with ongoing side effects of the chemo and other complications, Steve and I decided to surrender the battle flag and slowly end the dance. I instinctively knew he was dying. He did, too.
Despite doctors' recommendations that he rest, recover and try the chemo later, we stopped treatment and started a program with Hospice of Virginia. Reflecting back on it, I wonder why dying wasn't openly discussed as an option — and not one that was perceived as giving up. Why isn't choosing to die on your terms considered heroic?
Steve entered the hospice program earlier than most people do and even went back to work for about a month. We embraced the hospice concept and took whatever help and support they offered. He felt empowered and finally in control. His immediate family members came for visits while he was still able to talk, reminisce and share their love. Our priest came by regularly to give him communion. Our teenage children were able to be part of the process because he wasn't holed up in a hospital room, away from them. Our close friends helped me as the end drew nearer, keeping watch, loving, laughing and sharing an entire life in one month. I knew then that my ultimate job as a caregiver was to help him die. My nights were long and often unbearable, but after all the suffering he had endured, it was a sacrifice I gladly made.
A few days before he died, I picked forsythia from our yard, like I do every year, and put it in water to force it to bloom. Early on March 3, I awoke knowing that this was the day he would die. I gazed at the forsythia, which was still unopened, and called everyone who needed to be part of the vigil. Steve died at about 4 p.m. in our bedroom, overlooking the trees in our yard, in the house where our children were raised. His dance had come to a graceful end. There was no more fighting. Just peace. Moments after he died, the forsythia bloomed. My job was done.