My husband has a brain tumor.
Those words have gone through my head a hundred times, in a hundred different ways, for three years. They are part of my consciousness, my subconscious, my words, and my prayers. We had no preparation for this, true for nearly all cancer patients and the ones who love them. Really, no one sees it coming.
One day you’re going along, just like normal. Then suddenly, your world turns upside down.
Many years ago, when I was swimming in the Atlantic, a ferocious wave pulled me off my feet and down under. It was so disorienting that I literally didn’t know which way was up. This is how it felt to learn that my husband, Ted, has a life-threatening illness from which there is little hope for recovery or a long future together.
In April 2011, Ted and I, married just a few years, stayed the night in the somewhat broken-down little town of Stroudsburg, Pa., en route to a reunion in Ohio. At 7 a.m., Ted called to me from the bathroom in a voice I’d never heard from him, a voice filled with fear.
I rushed in, and saw his right leg shaking involuntarily. I helped him into bed, pulled covers up to warm him, and the shaking – the seizure soon subsided. This was the start of an unplanned, unwanted journey, a nightmare that took him through test after test, a hospitalization and misdiagnosis in Ohio, a definitive work-up at Mass. General, and ultimately treatment here in Maine.
In those early weeks, we cried, hugged, made calls, and researched the latest studies. I floated in and out of denial. I’m a nurse, inactive due to a back and neck injury from an auto accident. Ted’s a physician, a young-acting and looking boomer. This hit us in the gut. His brain cancer, a glioblastoma, is growing on the left “motor strip” and is inoperable. How could it be that this man, so athletic in skiing, hiking, kayaking, running, could find himself, just prior to retirement, barely able to walk, reliant on others for many of his basic needs? Treatment, we were told, might give him an average of about 18 months survival, with a 5-10 percent chance of living “for years.” The statistics are grim.
I was beyond heartbroken. There was chemotherapy, radiation, more chemotherapy, side effects, and medicines to counteract the side effects, which carried their own side effects. Pills to reduce brain inflammation caused thinning of his skin. The chemotherapy to combat cancer cells caused low platelets and anemia. His arms became bruised and cut; his memory worsened. The steroids made him crazy-hungry. We both gained weight. Thanks, Ben and Jerry’s.
Medical appointments, schedules, insurance fights – what was left of normal life was changing drastically, leaving few areas untouched. We were scared, grieving. In that first year, I wondered if every place or event would be our last.
Then one day it dawned on me: Did we want to look back and remember how somber and agonizing this time was? Or remember that we also had fun? The answer was clear to both of us, though things were far from uphill.
Ted’s chemotherapy wipes him out at times, the tumor causes significant right-sided impairment and his mobility’s declined. And I watch, powerless, loving him, longing for a miracle, praying for healing, hoping with all my heart that he will walk normally again, or maybe regain use of his right hand. Or be told that he has won the battle.
And a battle it is. Personality traits seem exaggerated. He, more casual. I, more obsessive. I gasp with his minor missteps, terrified he’ll fall. And he falls plenty, no matter how careful he is or how often I gasp. I cry so often and unexpectedly that I’ve stopped wearing mascara. With love also comes arguing. Most couples disagree or get grouchy with each other. Sure, he has cancer, but does he have to rule the channel changer? It’s hard to be angry with someone who has a brain tumor. We are constantly reworking the nuances of our relationship. He frequently needs help, but doesn’t want it. I get that. But it’s frustrating to watch him struggle with zipping his coat, knowing he’ll ask for help anyway. Or to stand in the freezing cold as he slowly maneuvers into and out of the car. I feel so deeply sorry for him, and at the same time internal conflicts abound as I recall past times when he drove and I could relax or read the paper and sip coffee. Selfish thoughts, perhaps. It’s hard to be selfless and loving 24/7. Guilt has become my default setting.
At times, I was – and am – physically and mentally exhausted. Cancer is messy. We go through a lot of paper towels. I’ve tried cutting back on tasks, but as the saying goes, wherever you go, there you are.
Everyone keeps reminding me to “take care of myself.” They mean well, but I’ve heard it so often that I want to smack someone. I have physical pain most days, and now, I’ve lost my helper in Ted. We use a cleaning service and a handyman. It took me ages to get comfortable accepting help from friends. Therapy has helped, and I have begun to forgive myself for my shortcomings. Ted and I have put our diaries about his tumor together, the beginnings of a book project.
I’m still all over the place. Filled with love. Annoyed as hell. Trying to live in uncertainty. Grateful. Scared. I don’t want to lose him.
The small losses pile up. But so do the blessings, something I never understood about cancer. We regularly go out for frozen yogurt at a small Portland shop where we are treated like family. Store clerks whisper, “How is he?” Friends drop off food. A neighbor brings the newspaper up our hilly driveway in the snow. A carpenter installs a second stair rail and refuses payment. Family and even Facebook friends offer love and prayers. The manager at a large movie theater escorts us inside from the closest exit so Ted doesn’t have to walk too far. Just when I think I will crumble, these human angels pick me up.
The essence of cancer, simply and eloquently stated by Ted’s wonderful oncologist, is that “cancer is inherently unpredictable.” Last September, his tumor started to grow again. New grief, new disbelief, new decisions, after we had been lulled into thinking he had won. Then recently, his MRI showed that the chemotherapy is not working. Now he will start something different. I push away fear and anxiety, and hope, once again, for a miracle.
But until then? We’ll hug, laugh, cry, and maybe argue.
And check out the movie listings.
Kathy Eliscu, who lives in Westbrook, writes “Lightly Roasted,” a humor column for Maine Women magazine. She also blogs at www.kathyeliscu.com.