Where The Popsicles Are.
The CA: A Cancer Journal for Clinicians, estimated that in 1996 there were just over 1.3 million new cases of cancer diagnosed in the United States. Of that number, there were approximately 764,300 males and 594,850 females affected. Joan Wigen was one of those women.
When the nurse came into the clinic waiting room to summon me into Joanie’s gynecologist’s office on that day in 1996, I had a bad feeling. Joanie was my wife. We were married in 1989, after being together since the early 80‘s. When I walked into the small examining room I saw her sitting there in that hospital gown looking so vulnerable and could see she had been crying and I knew the news was not good. It was cervical cancer the doctor told us, and our lives changed forever.
Joanie, in the intervening years, underwent numerous surgeries, major and minor; weeks of radiation; many episodes of chemotherapy; trips to the Emergency Room; stays in the Intensive Care Unit; lengthy hospital stays, and did it all with a tremendous courage and strength of spirit.
That day, May 7, 1996 marked the beginning of a roller coaster ride that ended on a quiet April night in 2008 and I have been encouraged to write about what I have learned about patient advocacy and care giving by people who are familiar with what went on with the woman I loved during those 12 years.
I struggled with the idea for some time. It wasn’t until I realized that I couldn’t separate what I have learned from also telling of Joanie’s remarkable struggle once she was diagnosed with cancer that I was able to begin to put it all on paper. Had it not been for that pronouncement I wouldn’t have learned what I have from caring for a patient with a life-threatening disease and dealing with the complexities of the medical system as it exists today. I’ve also been struggling with this project since she died in April, 2008, starting it several times only to put it aside because I found it painful to relive her struggle and loss. It is only now that I feel ready to do what I set out to do four years ago.
So began the incredible journey that day in May, and it was then I realized the first of many things I was to learn over the next 12 years, and that was to never let the patient see the doctor alone. That was brought home to me that evening when some supportive friends of hers had stopped by to see her and wish her well. She was on the couch, visiting with them, and she said to them, “I might have cancer.” I quietly corrected her in their presence by just saying, “Joanie, it is not a question of might, you do have cancer. The only question right now is what stage it is.” From that point on I knew that her defenses were up and working well, and that the news she had heard earlier that day was so overwhelming that it was going to take a while for her to come to grips with it. This all seemed perfectly natural to me, however, it also made clear to me that every time she was going to be see any doctor in the future I would have to be there so I would know what exactly was being said and what was being planned, and I was.
Oddly enough, it was Joanie who first encouraged me to write about what I had learned about being a caregiver to someone facing a serious and life threatening disease. She knew that I had been taking notes over the years, doing research, and had been involved with every aspect of her care since the beginning.
What I hope to do with this series is invite you travel with me on that incredible journey so that you may learn what I did, and hear a story of Joanie’s battle, a battle she waged with a courage, strength and dignity that I’m still in awe of years later. It is my hope that, for you dear reader, you will learn something, and in the retelling, I will learn something more myself.
The 12 years of Joanie’s battle was a learning experience for both of us, and especially me, for if I was to provide the kind of support she needed to deal with this disease, I needed to find out as much as I could, as a lay person, about this disease, its treatments, its outcomes, its affect on her, the things she wouldn’t, or couldn’t talk about, and where the popsicles are.