The Value of Sharing What You’ve Learned

My husband has cancer. The disease and his treatments have dictated the last eleven years of our lives. He was diagnosed in 2002 with chronic lymphocytic leukemia, CLL, (a type of nonHodgkin’s lymphoma), usually considered an old man’s cancer. He was 39 at the time and a partner in one of the largest private gastroenterology medical groups in northern California. It was three weeks before our third child was born and a sweet time in our lives. Our other children were ages 4 and 7. After the initial treatments we had two good years with ‘no detectable disease.’

Since Labor Day 2007, when the lymphoma showed its ugly return, it’s been a brutal ride – no other way to describe it. We have endured 27 rounds of chemotherapy and the after effects, over 90 blood transfusions, full body radiation and its associated illnesses, four months of living away from our children during a stem cell transplant, middle of the night runs to the emergency room for stomach bleeds and unexplained fevers, a ten day coma from an infection, twelve leg surgeries to remove infected bone, walkers, wheelchairs, and reconfiguring our house to accommodate his treatment induced physical disabilities.

We have also felt the emotional sting that came when his medical practice group he helped create 13 years prior decided he was not partner worthy anymore. We’ve lost friends, we’ve rekindled old, we’ve made new, and we’ve felt the sadness when fellow transplant recipients did not survive. We’ve watched as my husband’s former patients, who would always exuberantly thank him for his medical care, stood speechless, shocked by his changed facial appearance due to the transplant induced graft versus host disease. We’ve overheard other’s ask, “What’s wrong with him?” and then had to explain to our youngest why they ask. Many people have told us we must share our story. I haven’t been so sure. It is personal, it is ours. Then recently a friend shared a few sentences from Annie Dillard’s book, The Writing Life. “The impulse to keep to yourself what you have learned is not only shameful, it is destructive. Anything you do not give freely and abundantly becomes lost to you. You open your safe and find ashes.” [These words struck a deep place in my heart.]

I am a mom to two sons now ages 11 and 15 and a daughter 18, who keep me going each day with their inquisitive questions, dry humor, and smiles. I am also a dietitian, nutrition instructor at our local university, writer, and former national spokesperson for the world’s largest food and health professional organization – the Academy of Nutrition & Dietetics. I chair committees for other national nutrition groups and have advanced degrees in nutrition and epidemiology. I’ve seen medicine from the inside out and from the outside looking in. I’ve studied the science. Pleaded with God. Bargained with emergency room administrators. Petitioned our state’s medical insurance board for denied lifesaving treatment. Laughed at the ironies. Embraced the unknown. Let go of control. Begged for peace. Through it all, I am learning that sometimes it is best to ride the horse the direction it is going.

Jeannie has been writing a blog about their experience as a young family living with cancer. It can be found at www.balancedlivingwithcancer.wordpress.com.