My Dad, Tom Brokaw, is publishing his 5th book this week: A Lucky Life Interrupted. This book was written during the year he was getting treated for multiple myeloma, and is a hybrid memoir of his illness and his career as a journalist.
On the very first page, he quotes me, saying: “Dad, we’ve never had anything go really wrong with our family. I wonder if we could handle it.” While I think I was in high school the last time I voiced that concern, I’ll admit that it has crossed my mind many times in the intervening years.
I suspect many people walk around asking themselves the same question I asked my dad all those years ago: “If I got a serious or terminal diagnosis, could I handle it?” I myself wonder if that concern led me to a career in medicine in the first place (if you can’t beat it, join it!). With the perspective I have gained in my twenty years in the field, I believe that we should all spend some time contemplating the “What if?” In fact, my father and I had the opportunity to discuss his thoughts about illness and death just two years before his diagnosis at TedX Stanford. That conversation led to a more formal and thoughtful Living Will completed by my parents in late 2012. By mid-2013, he was in the throes of treatment for his disease. When the conversation about stem-cell transplant came up, my dad immediately asked about his quality of life during that arduous process and weighed whether the slight survival benefit would be worth it to him. I don’t believe he would have been able to ask that question if we hadn’t talked about the “what if?” before he even knew he was ill.
As an emergency room doctor, I have been witness to unspeakable events. A mother who backed over her toddler in a car, killing her instantly. A young man who was speaking to us one minute and in cardiac arrest the very next instant. I also remember times when someone would come in for a vague, seemingly innocuous complaint, and leave with a terrible diagnosis. One woman in her forties I remember well, came in for constipation of several weeks duration and was annoyed that she was getting so bloated. She left with the knowledge that she had an ovarian mass and cancerous fluid building up in her abdomen.
Many physicians are front row witnesses to that moment when life changes forever for someone. The great chasm is crossed from the land of the healthy and vital to the territory of the condemned. Even less serious, but chronic diagnoses can bestow an unwelcome label or set of limitations on someone that changes everything for them. It’s always distressing to observe someone dealing with that new reality. In my view, the world can be divided into 2 camps: Those that have ventured into the world of infirmity and death and those who have not (yet). Previous studies have suggested that only 20 % of people have experienced serious illness, either themselves or via a close friend or relative. Undoubtedly, will change as an estimated 10,000 Americans turn 65 every year.
Lets not forget that the “club you never asked to join” includes not only those who have been through serious illness and their loved ones, but health care workers themselves. My dad makes an astute observation on page 38 :
“As I discovered during my Mayo (Clinic) stay, there is more than some similarity between those who wear military uniforms and those who staff our big healthcare centers. Healthcare workers are not being shot at, obviously, but they are exposed to dangerous diseases, they are mission-oriented and they work in a hierarchical environment…..”
I would add that like soldiers who have seen combat, those who work in health care observe human frailty and suffering on a regular basis. As health care professionals, we don’t ask ourselves…”What if?” We ask “When will it happen to me too?” and “What would I do if I were in their shoes?”
When my colleague, Kim Garlinghouse gave birth to twins with a seizure disorder and then discovered a cancerous breast lump while nursing her fourth child six years later, she thought it had added the straw that would break the camel’s back. However, she acknowledged: “From my experience as an Oncology Nurse, I knew it (cancer) could happen to me, and at the moment it was happening to me, I realized that I would need more information and support than I ever imagined.” Kim walked away from her experiences knowing that the “What if?” question is only the start to the myriad of questions and choices that follow a serious diagnosis.
I have admired the grace and strength my parents have both displayed through my Dad’s illness, and I know that some of it comes from the fact that, on some level, they knew that their luck would run out eventually. When I asked him recently about some of the decisions he may have yet to make about treatment , he said:
“When I consider the possibility of stem cell transplant, which has been a standard of care in the past, I think about the required hospitalization. It could be for as long as several weeks followed by life as an outpatient in a germ free environment for several more. At my age, given the dwindling number of days I have left, I want as much freedom as possible. If I had no other choice to contest multiple myeloma I would undergo stem cell transplant,but I am doing so well on these novel drugs, I hope to stay that course. Thinking about the decisions I may have to make later on is an instructive exercise about prioritizing my goals and not losing control of what happens.”
Having the opportunity to talk about the “What if?” with my dad has assured me that no matter what happens with his myeloma, we will we handle it just fine.