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Another Devastating Diagnosis to Face
Jessie Gruman | September 27, 2010
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. This 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.
Updates on Jessie:
[i] AfterShock: What to Do When the Doctor Gives You 'or Someone You Love' a Devastating Diagnosis (Walker Books, 2010, 2nd ed.)
More Blog Posts by Jessie Gruman
Jessie C. Gruman, PhD is president and founder of the Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter @JessieGruman. | More about Jessie Gruman
Comments on this post
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September 27, 2010 at 12:40 PM
I just wanted to extend my best wishes to you for this next round of treatment and recovery. I just wanted you to know that I feel I'm one of many thousands who are (unbeknownst to you) deeply touched by you and all you do.
I briefly introduced myself (as a friend of Gary Kreps) at your National Press Club presentation - which had a profound impact on my thinking. So much so that I accordingly modified my 2010 APA symposium presentation, a training workshop for psychologists I conducted at Tripler Army Medical Center, and now a chapter I'm writing about training in self-management support.
I am grateful to you for all your hard work and what you've contributed to so many of us! Thanks so much for sharing yourself so personally, again and again. All best for a full recovery ... again.
|Gary Schwitzer says|
September 27, 2010 at 12:43 PM
Over and over you have provided lessons for others on navigating the health care system, on shared decision-making, on being a smart patient.
You are doing it once again.
Your students are pulling for you.
September 27, 2010 at 2:51 PM
We met at CUE this year. I offer my help and that of my organization - we provide information about complementary approaches that can be used in integrative ways to help deal with cancer surgery and treatments.
Wishing you the very best outcome.
|Robin King says|
September 27, 2010 at 3:04 PM
Jessie, you have helped countless seniors and others in this area. We are there for you in our thougts and prayers as yuo go through this! Robin
September 27, 2010 at 4:58 PM
I am so sorry to hear about this recent diagnosis. My prayers are with you at this difficult time. I am praying for a full and speedy recovery. Love you very much.
Dawn K. Wilson, Ph.D.
Professor of Psychology
University of South Carolina
Columbia, SC 29208
|“Another Devastating Diagnosis”: JoPM Editor Jessie Gruman undergoes surgery for a fourth cancer | e-Patients.net says|
September 27, 2010 at 6:26 PM
[...] today in New York to address the fourth cancer-related diagnosis of her life. Today she released a blog post about [...]
September 27, 2010 at 8:36 PM
Jessie--Hope all went well. Please keep us posted on your progress.
September 27, 2010 at 8:46 PM
Jessie, We're waiting for news of the outcome of your surgery and holding you in our thoughts.
September 27, 2010 at 9:20 PM
Jessie, I'm sending you my wishes for a good, fast and complete recovery. Keeping you in my thoughts and prayers. You continue to be an inspiration to me and so many other patients. Andy Robinson
|Bob Abrahamson says|
September 28, 2010 at 9:00 AM
Sorry to hear about this latest chapter. On behalf of myself and colleagues at Krames (you gave a talk a few year back at a client summit), I wish you the a speedy recovery.
|Tweets that mention CFAH - Prepared Patient Forum: Another Devastating Diagnosis to Face Â« CFAH PPF Blog -- Topsy.com says|
September 28, 2010 at 5:34 PM
[...] This post was mentioned on Twitter by SusannahFox, Alan Greene, Lisa Neal Gualtieri, Lygeia Ricciardi, Chris Schroeder and others. Chris Schroeder said: RT @SusannahFox: RT @DrGreene: Deep best wishes to @JessieGruman with another devastatng diagnosis, again teaches us all http://su.pr/1lnFCy [...]
|Maryann Napoli says|
September 28, 2010 at 7:42 PM
This is very sad news. May you weather this ordeal as successfully as you have all others.
With much love,
September 28, 2010 at 9:36 PM
I'm pulling for you. You have helped so many, and I'm sure I join all of those you've helped in wishing our words and prayers help you.
October 5, 2010 at 4:13 PM
Ray W says, as we say on Chicago's south side..."Crap!"
Jessie-Lorna and I are pulling for you too. We need you! There is so much to do and I only wish you didn't need to learn through experience.
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