I have stomach cancer and will undergo surgery to remove part or all of my stomach today.
While a truly expert blogger would have documented the facts and his perceptions from the moment of discovery, I have been preoccupied with absorbing the shock, weighing my options and managing the logistics. I have been short on insight, long on anxiety.
But I have regained some composure since finalizing the plan for my immediate future, so I thought I’d try to capture some of my observations about this wild period this time around. After all, I listen all the time to people talk about how they experience these few weeks between a serious diagnosis and the beginning of treatment and, having gone through it repeatedly myself, I have a lot to compare it to.
A little background: This is my fourth different cancer-related diagnosis. My stomach cancer was discovered due to the vigilance of my primary care doctor who treats adult survivors of childhood cancer and who leaves no symptom – regardless of how minor – unexplored. I had dismissed my insignificant symptom once it disappeared after a few days. However, my doctor didn’t, and it turned out to be a small gastric tumor, probably a result of the high doses of radiation that were the standard of treatment for my stage of Hodgkin’s disease in the early 1970s. The tumor will be removed Monday, along with as much of my stomach as is necessary to prevent its recurrence. While the size of the tumor and its staging leave me optimistic that I won’t need chemotherapy and radiation, I won’t know for certain until a week after surgery.
Here are some of the thoughts that have been swirling around:
ARE YOU KIDDING? Again? I was just starting to feel like maybe I’m normal – not a perpetual cancer patient. This is so disruptive for me, for my beloved family, colleagues and friends! I’m worried by how long it is taking to set up my plan: Is the cancer spreading while I’m auditioning doctors? I’m struggling to hold onto my belief in randomness, trying to not blame myself for doing something that caused this. Every hour this situation looks different: just when I start feeling optimistic, my imagination coughs up a new horrific scenario.
Breaking through this turmoil are bright flashes of gratitude: for the amazing luck of finding the cancer while it is small; for my access to smart doctors who take me seriously and who will do their best for me; for my intense, indefatigable, funny husband; for my brother Pete who has left his family to entertain us during these few days; for my family, my friends and colleagues who offer words of support and gestures of solidarity.
I remain impressed by the number of life-changing choices I must make quickly to respond to a serious diagnosis. You probably know that I wrote a book about how to maneuver through this period after my last serious diagnosis[i] for which I interviewed more than 200 people, plus many experts. Well, I went back and read the book last week. It provides good guidance. But despite listening to all those stories and carefully laying out the logic for why and how to respond, despite all my expertise in using scientific evidence to make health care choices and despite all my experience responding to my different diagnoses, I still don’t seem to be able to coldly examine the facts and evaluate the surgeons’ strategy as though I were choosing which laptop to buy. “Doing the best I can” is probably a more realistic description of how I’m able to approach this, rather than being a “savvy health care consumer.”
I have a newfound understanding of the gravity of shared decision-making. When my surgeon tells me about the risks associated with the different possible approaches to surgery and asks my preference, she implicitly is asking me to assume the risks of the choice I make. I am reluctant to respond, not sure I know enough to choose. If I get it wrong and the outcome is bad, will it be my own fault? On the other hand, it is inconceivable to me that she would make this decision – which certainly will have an impact on the quality, if not the length of my life – without me.
And I’m realizing that at the end of the day, it doesn’t matter how much I know or what I believe or how ready I think I am to die. It doesn’t matter what books I’ve read or what books I’ve written: the news of a serious cancer diagnosis packs a powerful punch. And that punch affects not only me. It produces a wave of distress that washes in various ways over my family, friends, co-workers and acquaintances.
One lesson I’ve learned from my previous experiences, however, is that within a few weeks the wave will abate. We’ll all calm down. And with some idea of what lies ahead, my family and I will adapt to the new demands of my treatment one step at a time while I assemble a version of the life I had before.
Right now, however, the first episode of my current illness is ending – I’m making the last few phone calls and straightening my desk. Tomorrow morning I will become a patient: I’ll turn the responsibility for my future over to those whose skills, expertise and compassion can make their unique contribution to my ongoing effort to live as well as I can for as long as I can.
I’ll let you know how it goes.
[i] AfterShock: What to Do When the Doctor Gives You – or Someone You Love – a Devastating Diagnosis (Walker Books, 2010, 2nd ed.)
Update: On September 27th, Jessie Gruman had surgery for the treatment of stomach cancer. She is recovering with her husband and family by her side. Jessie hopes to begin blogging again soon, and you can follow her recovery and plans for follow-up care on the Prepared Patient Forum: www.preparedpatient.org.
Jessie Gruman, PhD is the founder and director of the Washington, DC -based Center For Advancing Health. She is the author of Aftershock. What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis.