Over the long course of treatments my wife Linda faced in her 8 years of ovarian cancer, there were many moments when the choices made were not clear or easy. Cancer is an unknown by definition. It is present in our bodies because something’s wrong, but that something still confounds the medical world in significant respects. Billions of dollars have been raised and spent to find a cure for cancer, and there has been progress in terms of survival rates, but a true cure still eludes us.
Beating the odds
That means every treatment is an attempt to beat the odds, as it were, and Linda and I were never gamblers by nature. Yet faced with choices we would rather not be making, we did the best we could to listen to what the doctors told us and proceed.
Simultaneous to our first year of working through surgeries and chemotherapy together in 2005, my mother was dying of cancer and we did not really know it. We all figured my father, a stroke victim for years prior to my mother’s illness, might be the first to go.
Which made it strange acknowledge the medical reality come August and September when my mother’s lymphoma caused some challenges. The oncologist tried treating her with chemo and it was too much for her 80-year-old body. Finally it was discovered the real culprit was an underlying pancreatic cancer. Within days of the last chemo treatment my mother fell to a stroke and the decisions about what to do, medically speaking, had changed entirely. She could not swallow and that meant no food or drink could be administered. So hospice became our ally and through it was difficult to face facts, it was the right thing to do.
In the first days of hospice a very hard choice had to be made. My mother was still gesturing for food and water. She was not conscious in the sense of being able to talk or even communicate, but her body was talking and she was listening, to some degree. That tore me up, and for some reason that first day the hospice worker did not make it to our house to support the cause.
I went home racked with guilt while the overnight nurse stayed with my mom. My father with his stroke could not help mom in any way.
At home, bent over the kitchen counter in tears, I prayed about what to do. Instantly a cell phone call came from my brothers who were driving overnight through Pennsylvania, Ohiol and Indiana to join me in Illinois. “Hey,” my brother’s voice came through the phone. “We were looking at the stars and thought we ought to call you.”
I broke down in exasperation over my mom’s condition, but my brother assured me in a strong voice that we were doing the right thing. “We’re right there with you,” he insisted. “There isn’t really a choice on what to do.”
All the while it was important to keep some of the drama from my wife, who was still going through chemotherapy herself. Every treatment brought new challenges it seemed. Her body reacted to chemo badly a couple times. Literally she’d be kicking her feet on the couch trying to cope with the pain and discomfort that chemotherapy caused in her feet, legs and hands. Yet it would finally subside and we’d catch our breath a couple weeks before the next round.
When my mother passed away, Linda and I were sitting by her bedside with my father, who was holding mom’s hand. The caregiving nurse was there too. The quiet that finally came over my mother was a blessing indeed. She had passed from this world and it was the right thing to do. There were no gambles going on at that moment.
We held her memorial service at the Unitarian Universalist Society church she so loved, and people told me afterwards, somewhat surprised it seemed, that it was the most devout service they had ever attended. I read a eulogy for my mom just as my son would someday read a loving testimony before a congregation for his mother.
Medicine seems far away at that point, but it has a lot to do with delivering us from evil while we are alive and fighting cancer, and that should never be forgotten.
Dancing With NED
In between 2005 and 2013, there were long periods when my wife Linda enjoyed triumphs over cancer through a medical journey too convoluted to relate her. We cherished periods of remission . The cancer community calls these times “Dancing with NED,” with stands for No Evidence of Disease. It is a medical term cancer patients have co-opted for their own purposes.
It can be tough when one must move from Dancing with NED to another Tango With Treatment. There is the shock of knowing what is to come, and knowing not at all what might happen.
Then there is the gradual immersion into the elective illness that is chemotherapy, punctuated by the inevitable new side effects as well as problems that never seem to leave from the last round. Linda had a numbness in both her hands and feet called neuropathy that made it hard to do normal activities of all sorts. She laughed it off the best she could. Then while taking the delayed chemo drug Doxil last year her hands and feet blistered so badly she could hardly function. Yet she went out into the drought and heat and gardened for all she was worth. That is real courage. She had real courage.
Cancer on the brain
It became medically absurd after 8 years of treatment when it became necessary to do brain surgery for a cancerous tumor that showed up in her brain. “That’s not supposed to happen,” the doctors told us. Medically speaking, anyway. But we went through her brain surgery together and then spent a crazy day sitting around together while she wore a giant metal ring around her head to prepare for radiation. She endured that day with aplomb, I can tell you, with nothing but positive things to say despite her lack of hair and wearing that heavy metal mask of metal necessary to calibrate the radiation treatment. The metal ring had small spikes that poked into the bare skin of her scalp, drawing blood when the ring was finally removed at the end of the day. It made me think of the crown of thorns the Romans jammed on top of the head of Jesus Christ. Yet Linda's crown was for healing, not torture. So we took some photos and had a laugh. That was our way.
A better place
The month following radiation treatment was a time of euphoria for Linda. The steroids prescribed to handle any swelling of the brain lifted her mood and we lived as if there were no tomorrow, because it did not matter if there was. Medically speaking, she was cured of the cancer in her brain. That was a miracle of sorts. So we went with it.
Ultimately the cancer in the rest of her body had the final say. Lungs. Liver. We’d hit that cancer with round after round and years of chemotherapy but it was too persistent. The cycles of recrurrence had come closer together and finally it made no sense to do any more chemotherapy. Her blood counts simply would not allow it. So we came home and watchfully engaged in what care we could embrace. Her stomach swelled with ascites and that made her sad and frustrated. But again, we had to roll with it. At one point it was a question in my mind whether we should have the ascites drained as we'd done years before, removing 6 liters of fluid at the time. But in her condition with low counts there was too much risk of infection or other complications. So we went the natural route. Because we are not gamblers by nature.
A better course
It was tough for my son and daughter, her mother, sister and brother to see the strong soul we know as Linda become unable to do the things she loved to do. But there were no regrets in my mind, anyway. We literally had done everything we could over the years and made the absolute best of it. Of that there is no doubt. No gambles. Our choices were good ones and as a result, the medicine worked pretty darn well for 8 good years. The hospitals and doctors we trusted were many; Lutheran General Advocate, Rush Copley and Cadence Health System all did their part as we bounced around for the various treatments thanks to the differing requirements medical insurance, HMO and PPO. That's a whole different story, insurance. If you want to hear it someday, let me know. America could learn a lot from out tale.
Yes, there were tough moments toward the end. No one likes to face the end of life, yet even in that fearful passage we found humor in the moment with Linda. She never changed who she was. Her fears flowed freely and we did our best to field them and offer comfort back. It was received. We are all still a bit shaken from the experience because when the medicine changed from trying to make a cure to trying to keep her comfortable, it did not always work the way it should. That left it to us to provide the comfort, and each one of us pitched in.
Linda asked for some quiet moments as she moved through the long days perched on a medical bed out in the living room where the morning sunshine flowed in and illuminated the many flowers delivered to our door. We respected her need for quiet and yet craved to be with her while also taking care of the necessities of life.
It was a blessing that my son and daughter and I were all there together when she moved beyond this life. There is nothing medicine can do or should do in those days when it is right to seek comfort and care rather than intervention. We’d all also been through the passing of my father-in-law just a year before. It is a passage of rites for everyone.
We know how to sit by the bedside. We know how to love in the moment. We are learning what it means to miss those we love while finding joy and comfort ourselves from our network of friends and family.
We all try to limit our gambles in those respects. Phone calls help. So does saying “I love you.” All the time.
Because it’s true. In the end, love really is the best medicine. Or is that laughter? Do we have to choose? I think not.