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A Conversation With My Personal Oncologist.

Son: One of my favorite stories from childhood has always been when the
     two of us were at a BBQ restaurant and you shared a bit of your
     day. To quote you, "I took a three-pound tumor out of a baby. I
     told the OR staff to get it right to the cafeteria so it can feed
     six hungry people!" Joking aside, what was it like when you were
     first diagnosed two years ago, not so humorous?

Dad: I developed terrible back pain that just got worse and worse.
     I did my best to ignore it; as you know, I hate going to the
     doctor. The pain ultimately became so bad, I had to hobble to
     clinic with the help of a cane. Instead of a highly anticipated
     vacation, I got to experience the joy of having a bone biopsy. It
     used to make me happy that as a boy you repeatedly watched and
     eventually narrated videos of my operations. Now I smile to recall
     the day in medical school when you apologized to me for deciding
     that surgery was not for you. Another surgeon in the family
     wouldn't be at all helpful to me now!
Son: Your diagnosis was tough on me. As a pediatric oncologist, I
     knew metastatic anything was bad in adults. Since then, I have
     worried about how you would handle being a cancer patient. I also
     worried about my mom a child psychiatrist, whose own defense
     mechanism was to try to psychoanalyze you. Not knowing how else to
     support you and Mom from a distance, I fell back onto what I know
     how to do well, I looked up the latest research and contacted
     every prostate expert I could to see what treatments made the most
     sense.
Dad: Having you as my "personal oncologist" watching over me was
     very comforting while sorting out the information I got from
     doctors. It was also both fascinating and reassuring to hear you
     speak with the experts in what, at times, sounded to me like a
     foreign language. You were far superior to my attempts at internet
     searches.
Son: What was going through your mind after the cancer stopped
     responding to first, and then second-line therapy?
Dad: Hopes get dashed when drugs stop working and it's depressing
     for a while. On the other hand, when I was once asked to describe
     my situation, the word "adventure" popped out of my mouth. Your
     mom and I were told at the beginning that there is no cure and
     that any treatments would at best buy me a few months. I know it's
     a long shot for any third-line treatment to provide a prolonged
     response, but I want to believe that I can be an exceptional
     responder. I never uttered the word "miracle" to a patient, but
     why not secretly aspire to that for myself? But I didn't know much
     about newer drugs or even where to start, and I needed that
     guidance. That's where you became critically important to me.
Son: Something else has surprised me, too. Over the years since
     your diagnosis, I have come to appreciate a subtle shift in our
     relationship. While accompanying you to a second opinion, you
     asked me to explain one of the studies and if you should enroll.
     It was the first time I can think of that you were going to follow
     MY medical advice. Instead of redirecting by reminding me about my
     childhood tendency to hide under the table at a restaurant, you
     saw me as a knowledgeable and competent physician. My
     relationships with my mom and sister have changed, too. Mom looks
     to me for support as she manages being a caregiver. And, since I
     wind up explaining the nuances of your care to my sister, it seems
     like even she has stopped thinking of me as her baby brother and
     I'm glad our relationship has started to grow up a bit.
Dad: I too had a physician-father who looked to me for advice as
     he got older. My dad trained as an ENT in the 1920s. Despite being
     a skilled surgeon, he never quite understood the nuances of
     antibiotics because penicillin was not widely available until
     halfway through his career. When he finally retired in the 1980s
     and started having more health issues, he looked to me as the
     expert, even though I was still a junior attending. While I
     certainly was no expert in geriatrics, I could be a good
     facilitator. So looking to you for guidance seemed a very natural
     thing to do, even if you didn't realize it. I needed a
     facilitator. Although I might not always show it, I've been
     impressed with your knowledge of oncology, which goes far beyond
     what I learned during my career. And, I'm proud of you--It's
     fulfilling to know we did a decent job raising you.
Son: As mom likes to say, "l' dor vador," from generation to
     generation.
Dad: I recognize this latest therapy may be only a short-lived
     response, and at some point, I'm going to be back where I was,
     looking for a new trial or taking more conventional meds. I'm
     trying not to think too hard about that. Right now, I continue to
     live my life. It's tough to imagine going through all this without
     you, my personal oncologist. It's great to be able to pick up the
     phone and call you for whatever question I might come up with.
     Send me a bill.


Postscript: In the months since we first wrote our story, my dad's cancer has broken through third- and now fourth-line therapy. He appears to be rapidly heading toward hospice. In reading the reviews of our conversation, it surprised me to hear that our conversation was perceived as overly formal and perhaps a bit too reliant on humor. My college admissions essay described my desire to build a deeper connection with my dad by playing with a model train set he had as a kid. It turns out I should have suggested we write a paper together. Upon reading our story, my mother and sister were both amazed that the thoughts and stories my dad put into this piece are more than he's shared with anybody about his entire cancer journey, and it was fascinating for all of us to learn about my grandfather's take on antibiotics. This process has helped me appreciate how much my dad is a product of his surgical training. Surgeons, at least in classical stereotypes, love to talk about surgery, difficult cases, and what interesting operations are worth writing up. Surgeons do not talk about feelings. Although the process of peer review may not be the most straightforward way of starting a conversation about terminal illness, putting this story on paper brought us closer together by providing a familiar structure for us to openly discuss issues of fear, loss, and missed opportunities. I am weary from all that has happened, saddened by my dad's failing health, and afraid of what's to come as my role shifts from "personal oncologist" to support for my mom and sister as we process my dad's decline. As we transition toward his last phase of care, I hope he can find relief from his symptoms and comfort from his family.

Received March 27, 2019

Revision received June 9, 2019

Accepted August 28, 2019

Harry Applebaum, MD

University of California, Los Angeles

Mark A. Applebaum, MD

University of Chicago

Harry Applebaum, MD, Department of Surgery, David Geffen School of Medicine at University of California, Los Angeles; Mark A. Applebaum, MD, Department of Pediatrics, University of Chicago.

Harry Applebaum is deceased.

Mark A. Applebaum is supported by the National Institutes of Health (K08CA226237). The contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Institutes of Health.

Correspondence concerning this article should be addressed to Mark A. Applebaum, MD, Department of Pediatrics, University of Chicago, 900 East 57th Street, KCBD 5116, Chicago, IL 60637. E-mail: mapplebaum@peds.bsd.uchicago.edu

http://dx.doi.org/10.1037/fsh0000445
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Title Annotation:FAMILIES, SYSTEMS, AND HEALTH IN OUR LIVES
Author:Applebaum, Harry; Applebaum, Mark A.
Publication:Families, Systems & Health
Article Type:Interview
Date:Dec 1, 2019
Words:1340
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