No DNR - A Story of Courage & Trust

No DNR - A Story of Courage & Trust

My husband, Kirk, refused to fill out and sign the paperwork outlining what he wanted for his end of life experience. I was left to make those calls when the doctors and nurses needed to know what they should do. What were his wishes?

I don’t know. I don’t know. I don’t know. In the end, I did.

When the diagnosis of stomach cancer was given and the surgeries and treatment began, staff at each office added that Advanced Healthcare Directive to their handful of instructions. Once home it was set aside. He wouldn’t need it because he would fight this and win. He left me to believe that any mention of the possibility of his death would bring it on like Beetlejuice, Beetlejuice, Beetlejuice. 

With the initial diagnosis came plans for surgery and chemotherapy. When we had our consultation with the surgeon I undersood that scheduling would not be immediate. Even if we were able to get a date that day, it would be at least two weeks out. I also knew that Kirk was signed up for the Vuelta de Mazatlán, a multi-stage bicycle race with friends and teammates. A surgery now would rob him of his dream to become an international bike racer. Cancer would win that one. 

On his best day, my husband was a man of few words. He needed to know, will this stop him from riding his bicycle and how long will he have to…live? That day the freshness of the diagnosis struck him mute. 

I was first to find my voice. “Would it make a difference if he had the surgery yesterday, or if we waited for three weeks?” 

“Not really,” was the answer, “adenocarcinoma is very slow growing.” 

Next question. “Would exercise, I mean extreme exercise, cause the cancer to grow or spread any faster?” 

“No, it’s not that kind.”

 “Thank you, doctor. We will see you when he returns from racing in Mexico.”

He survived the surgery, chemotherapy and physical therapy. Beginning with a stationary trainer in the doorway he regained his balance, strength and stamina. With his teammates at his side he worked his way back on the road with long training rides. He fought his way back to racing again, earning a California State Champiionship jersey in the age-graded team time trial.

Rehabbing from the first surgery also involved refinancing our home loan to raise the cash to buy a shiny new MINI Cooper, the sporty model. Steroid-fed all nighters were spent in the garage modifying and upgrading everything to increase the engine capacity from 1.6 liter to 2.3. It was zippy and it could fly. He dreamed of the two of us racing side by side on the open course at Buttonwillow Raceway Park, me in my Mustang GT, him in the MINI Cooper.

Months later the cancer returned. A scan revealed a tumor growing behind his regrown stomach. Back to the surgeon and back to the cancer center for those nasty infusions. This time his all nighters were spent in a recliner chair in the living room instead of tinkering in the garage. When the physical therapist came to the house he insisted she get him back on the bicycle, even if it was a stationary one. He would take it from there. His plan was to defend that state champion jersey.

Somewhere in the middle of chemo treatments he began experiencing horrific headaches. A scan revealed a large tumor on the front of his brain. The neurosurgeon was certain stomach cancer cells had migrated and encapsulated there. For me it explained the changes in my gentle husband’s personality. We were at the point that brain surgery seemed to be the logical next step. Kirk nodded his consent and we were ready. 

The night before the surgery I pleaded one last time for him to fill out that paperwork. He rolled away, shutting me out. I climbed into the hospital bed with him. 

“See this question, Honey? This is how I would answer. What about you?”

His tortoise retreat beneath the sheets was the reply. I gave up, kissed the top of his head, and left him in peace. 

Now here we were, post surgery once again. Only different. He was different. No longer able to hold a spoon without it performing a lazy twirl between his fingers; I helped my husband eat. No longer able to balance to even stand; he fell requiring stitches in his forehead. He sat up straight in the hospital bed, eyes glistening brightly, a manic grin plastered on his face, making nonsensical conversation as he picked imaginary burrs from the air. 

Late one afternoon I took the call from his surgeon reporting test results on the tumor. “I am sorry. It was not the cancer from his stomach. It is glioblastoma, a more serious type. I am so, so sorry.”

There is no cure for glioblastoma. Slowly it seeps into the brain, insipid/insideous/hideous onset that smolders then gains speed like wildfires sweeping through a canyon. Horrific. Cruel. Unstoppable. Not caring what is devoured. It had already wiped out pieces of the man I loved, leaving him unrecognizable. Once again I was faced with those questions he refused to answer.

“The prognosis is not good. With treatment we can extend his life by possibly six months. What are his wishes? How should we proceed?”

My questions would confirm what I already knew.

”With those six months you can give him, will he be able to get back on his bicycle.”

”No.”

”Will he be able to get behind the wheel of the MINI Cooper?”

”Definitely not.”

“Thank you, doctor. There will be no more treatments.”

I returned the next day. Mercifully, the contorted face I could not bear to watch had softened into peace. His eyes were closed and his breath was even. With my ear pressed to his chest I could steady my heartbeat to match his. 

He could not fill out paperwork or even hold a pen to sign his last wishes. But he clearly showed me what being alive meant for him. He could not say the words, but he trusted me to know him well enough to make the call. The call that says, No more. Let him be. 

True to his bicycle racing form, Kirk saw the finish line, put his head down, and sprinted to the finish. In three days he was gone. The fight was over. Rest in peace, my dearest one. Rest in Peace.