A diagnosis of stomach cancer profoundly changes an oncologist

I was jogging one day while on a business trip in LA and collapsed during the run.  Within hours, I was at the hospital at UCLA Medical Center on a gurney headed for a CT scan of my abdominal cavity.  I remember telling the ER physicians that I was a doctor and recommending my own course of action.  As my advice to the ER doctors went largely ignored, I realized, at that moment, that being a doctor myself really didn’t matter.

I wasn’t a doctor anymore. I was a patient.

That was almost a year ago. At the time, I recalled that The Archives of Internal Medicine had published a much-discussed study that revealed doctors might recommend different treatments for their patients than they would for themselves. They were far more likely to prescribe for patients a potentially life-saving treatment with severe side effects than they were to pick that treatment for themselves. Yes, doctors were much more willing to risk their patients’ lives than their own; they were much more willing to gamble with their patients’ lives than their own.

Understandably, people are worried that these findings mean doctors know something they’re not telling their patients. But my own experience with illness taught me a simpler truth: when it comes to their own health, doctors are as irrational as everyone else.

I was diagnosed with stage III stomach cancer. I knew that the diagnosis was bad news; I’d seen the disease and its consequences many times while wearing a white coat, a stethoscope dangling from my neck, at a patient’s bedside.

At the beginning, I knew intellectually what was in store for me. I reluctantly allowed myself to be a patient, to trust my doctors and to let them lead me through the treatments and complications and side effects that rolled out with alarming regularity. I submitted to a brutal treatment regimen that had not changed much in over 40 years.

I soon realized I had no idea what kind of rabbit hole I had fallen into.

For my doctors, it was all about the numbers, the staging of my cancer, my loss of weight and strength. For me, too, it was about the numbers: the number of steps I could take by myself; the number of people I counted that passed by our bedroom window; and how many hours I could stay awake before sheer pain and exhaustion set in.

But it was also about more: my world progressively shrinking to a small, sterile, universe between the interminable nausea and the chemo brain that left my head both empty and feverish — between survival and death.

By the reckoning of my physicians, survival was a percentage, and a horrible one — fifteen to seventy percent if I completed the treatment regimen.  That seemed to be an incredibly wide spread.  More and more I found myself thinking about percentages. If I completed the regimen and the disease returned, there were seemingly no other viable treatment options. It was morphine and palliative care. I was 39 years old. Death was a 100 percent certainty, eventually. So did it matter?

During one particularly desperate moment, I decided that I had had enough. I refused further treatment. I lay in my bed without anxiety, comfortable that I had made the correct decision. I watched the events around me, including the distress of my husband, Brian.

My doctors couldn’t override it or persuade me to change my mind, but, luckily, my husband, Brian, could and did. From my mental cocoon, Brian was by my side convincing me to finish treatment.

My dreams of dying were not the products of anxious moments of terror. I was simply incapable of making the right decision for myself. My doctors were professional but ultimately could not decide for me. When neither doctor nor patient can make the right decision, it is vital to have a caring family member advocate on your behalf. Without Brian, and his tireless commitment to my recovery, I wouldn’t be here today.

While I am still battling cancer and have not yet returned to work nor am I leading a normal life, my illness has changed me profoundly as a physician. No amount of doctoring can prepare you for being a patient.  During the past year, I have endured multiple treatment methods, metastasis, and most recently the discovery of a brain tumor that threatens my eyesight.  The past year has been full of the most vulnerable moments in my life.

If anything, it’s that recognition of vulnerability as well as expertise that makes me a better doctor today.

Jennifer Kelly is a molecular geneticist and oncologist.

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  • http://twitter.com/ButDocIHatePink Ann Silberman

    As a person with metastatic breast cancer, I want to express my sympathies for what you are going through and I hope that you do well with treatment.  It is a difficult thing to face your mortality, and being a doctor – even an oncologist, can’t prepare you for that very personal experience.  

    In some ways, I think it would be tougher to be in your situation.  I have never seen somebody die, or be in the final stages of cancer so while I have fears surrounding it, I don’t have the experience of being able to place myself there as you may.  In some ways, you have it easier.  You have access to research, the ability to understand it,  and perhaps get treatments that a lot of us may not receive.  I am sure professional courtesy gets you places I can’t get to.  Yet, we are still the same, struggling for our lives and hoping for a miracle – mourning the future and hoping against hope we still have one.My best to you.  And, you will be a much better doctor for having been in a patient’s shoes.

  • Anonymous

    Thank you for sharing your story.  I have late stage ovarian cancer which also carries grim statistics like yours.  I think your angst about your disease is worse than mine, because you have cared for and witnessed patients suffer through the treatment process, while I only know my own.  My cancer can never be cured, only managed, which thankfully has been done so 8 years now with good QOL.  Even though the positive numbers of our survival statistics are not great, some lucky people get to fill those slots.  So why not you and me.

  • Michal Haran

    ” No amount of doctoring can prepare you for being a patient” 
    How painfully true. 

    • Anonymous

      No amount of living can prepare you for being a patient. We nurses and physicians seem to hope our education and training will keep illness and death at bay, but it doesn’t.

  • Katherine Day

    “I was simply incapable of making the right decision for myself.” This is a cautionary tale: how do we know whether people are making the “right” decision?  Dr. Kelly says that in her “mental cocoon” caused by her illness and the treatments she was undergoing, she could not make the right decision. But would anybody have declared that she lacked “capacity?” In the absence of Dr. Kelly’s husband or other close family member to urge continuing treatment, would it have, in fact, been the wrong decision to end all but palliative interventions?  The bottom line for Dr. Kelly seems to be “I would not be here now.” At one point, she would have been glad to die, if it meant some peace for her, but now, even with not much peace, she is glad to be alive. As a hospital chaplain, I wonder how to help someone get out of their “mental cocoon” while respecting their yearning for relief from pain and anguish. In the absence of someone like Brian (and many patients are alone in life), it may come down to a chaplain to help a patient in pain to see some way forward.

    • http://twitter.com/DoubleDocJen DoubleDocJen

      What a powerful comment.  I don’t believe at all that I lacked  “capacity,” but I would definitely say that I was, and continue to be desperate for relief.  If it were not for my husband (Read: alone in life), I would have given up a long time ago.  And that definitely wouldn’t have been the right thing to do.

  • http://profile.yahoo.com/TTZEYHQSNRZEVRGO6XL5P2O6PU scotty

    Jennifer, I wish you the very best as you would have so much to offer both patients and residents in training.  What you are learning right now can almost only be taught through direct experience but for someone to arrive at the realizations you  have, and put it in print, offers a lot of perspective.  

  • http://twitter.com/ddwebster Dana Webster

    Thank you for saying all the things most of us wish we could say and have someone really listen to.

    Almost exactly 6 months ago, I had a stem cell transplant for recurrent Hodgkins Lyphoma.  My cancer was supposed to have been cured 3 years ago.  I was supposed to live a long, healthy life.  Only, it decided to come back, beating all the statistics.  I got opinion after opinion.  I hated Oncologists telling me to get the transplant because I was “young and healthy”. 

    If I were healthy, I wouldn’t have cancer.

    But, I did it.  I spent 18 days in the hospital to make sure I was OK to return to society at large.  My reaction to my treatment was very similar to yours both mentally and physically.  And, while I await my next scans in a week, the anxiety is back.   No one but another patient understands.

    So, I can only say that you will find a lot of us out there like you.  Social media brings us together in ways we never would have been able to do before.  Best wishes to you as you continue to battle your cancer.

  • Anonymous

    Thank you for sharing your experiences. I wish you well and hope the “statistics” are in your favor. Hopefully you will be able to use your experience to teach other physicians and medical students “the facts of life”. 

  • Anonymous

    Appreciated your revealing story. As someone with 3 autoimmune diseases and a primary immunodeficiency ds, I have come to realize that the worst part of being a patient is that it can appear that we are no longer in charge of our lives, and that it is important to turn that around–at least in our minds.

  • http://www.bechronicallywell.com/ Tina Tarbox

    I wish you MUCH success as you continue your battle.  

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