The year I Lost my Breasts; a journey

There have always been diaries.  Before pencil and paper, we remembered our journey in song.  Recording experience provides a touchstone, an anchor allowing reflection on who we are and who we become.   Most journals remain private, perhaps read by family or friends after the writer is gone.  In our hyper-connected world that has changed.  Now, we often share our stories with one another.

One of these revolutionary connections is the personal diary as blog, e-book or self-published hardcopy.  These accessible technologies open up the lives of “the common man.”  We lay bare intensely personal stories, which may be unique, and at other times universal. No longer do we depend on the interpretation of expert writers and filtering media.   This new sharing gives validity to our lives, and allows others to learn and gain support

Paula Kaplan-Reiss’s, 2014 book, The Year I Lost My Breasts…and Got Some New Ones, is such a diary, become a book.  In clear and honest prose, Kaplan-Reiss, who comes from a family of writers, tells the story of her 2012 treatment for high-risk breast cancer, including initial chemotherapy (so called neo-adjuvant), bilateral mastectomies with immediate reconstruction, radiation and finally a year of the intravenous antibody, Herceptin.  Most of the book was written as contemporaneous diary and printed as a 121-page paperback, detailing her story of medical and frankly written personal events.

Kaplan-Reiss moves from the basics of medical care such as surgical drains, rashes or the taste of chemo in her mouth, through her relationships with doctors, friends and family, up to how national events affect her ability to cope, like the travails of Ann Curry or Angela Jolie.  The broad tone of the book is positive, even inspiring, because of the author’s personal strength, the presence of a strong support system and the absence of untoward complications (as if having Stage II breast cancer in the first place is not “untoward”).

The Year I Lost My Breasts… is full of hundreds of small but telling vignettes, such as her astonishment in being part of the “POPULAR sick group” at a breast cancer walk, or the entirety of Chapter 19, which reads, “Today was our 27th wedding anniversary.  We celebrated by Rick giving me a sponge bath and emptying my drains. It was very romantic.”  Her relationship with her oncologist, with his unique anxiety deflating sense of humor (when drinking chicken soup for a sore throat, “avoid feathers”) will make some readers want more from their doctors.

For me, having seen or heard similar stories for 30 years, I learned the most not from the individual diary entries or daily traumas, but from the transformation I perceive in Kaplan-Reiss over the 20 months of her saga.  On any given day, she shows courage and humor while dealing with side effects, the events of “normal” life, and the bizarre nature of cancer treatment.  Nonetheless, slowly, month-by-month, she is changed.  The chemo is complete, her surgery healed, hair grows and her appetite returns, but she is not the same person.

As in the title, she has new breasts, but they are not the same.  She misses them.  “I feel like I am wearing someone else’s breasts.”  Kaplan-Reiss herself is “someone else.”  She becomes more vulnerable and emotionally labile, but at the same time more sensitive and insightful.  In the later entries, she talks about how hard it is to travel, to leave home and comfort zone.  Kaplan-Reiss does not even write a journal entry about the moment her cancer was diagnosed until almost a year after she began treatment and it is only late in the book, the acute trauma being past, that she talks about death.

The Year I Lost My Breasts… is an important addition to the personal literature which chronicles the experience of disease and medical care in the early 21rst Century.  Patients will find commonality and support.  Family and caregivers will gain valuable insight into what is happening to their loved ones.  As a doctor, I am reminded that my patients are not blood tests, biopsies and milligram doses of drugs, but kaleidoscope beings on a transformative journey.  They are all, as the title of chapter 21, and my alternative name for this book, “A Work in Progress.”

7 Comments

  • Harriet Gottfried (a friend of Denise Nolan)
    I can really relate to the blogger "not being the same person". I have had a total ankle replacement and although the surgery was successful, the journey towards making the decision, the surgery and the rehabilitation that I am undergoing now has changed me in ways that have nothing to do with my ankle. I am a different person in my outlook on daily living and dealing with the future in terms of physical weaknesses that I did not experience before. It has changed my relationship towards family and friends that I did not anticipate. thank you for this post.
  • Wow, Dr. Salwitz. This was incredible to wake up to. I am honored. This is better than getting a NYT book review and makes up for the $19 royalty check I just received!
    • James Salwitz, MD
      I think your story is important at many levels. Thank YOU for telling and sharing it. jcs
  • Liz
    Personally I hate reading "inspirational"/"transformational" cancer stories (this is NOT a criticism of people who write about their experiences, after all their experience is valid for them and others may, and some probably do, find it helpful NOR ABOUT THIS BOOK NOR DR. SALWITZ's REACTION TO IT). My experience with breast cancer on both sides (incidentally since the author is on this blog - it took me about 4 years to have my fake boobs feel like they were physically part of me and not like someone had thrown lumps of clay at my chest - the emotional side of that - well that is it's own journey over time as well as you have discovered) and one of the incurable non-hodgkin's lymphomas has been anything but "inspirational", "meaningful in the end", "transformational". It has been filled with trauma, complications, problems… There are no earth shattering revelations, I am not a better person for going though this sh*t (I am not a worse person either - just a traumatized, weary, stressed person at this point)… I do not see ONE redeeming reason/lesson that would come from a cancer experience that make it worth having had these cancers. ALL experiences change us - sometimes for the better, sometimes for the worse, sometimes only in tiny, almost unnoticeable, ways. Hardship, suffering and trauma does not have a monopoly on having us change, grow and develop as a person. I also hate how "inspirational" cancer stories set up expectations for how other cancer patients "should" behave, think and feel; how they "should" be coming out the other side… then if this is not your ultimate experience others many judge you negatively. I am glad the author of this book found meaning in her experiences. I, personally, gladly would give up any "growth" as a human being I may or may not have gotten from this not to have gone through all the crap I have gone through. Frankly the cost is too high to "grow"/"change" this way. This is probably true for many traumas and tragedies as cancer does not have a monopoly on bad things that happen to people or bad things that people live through that change/transform them. Again I am not criticizing the author of this book or trying to invalidate her experience or the meaning others, including the writer of this blog, may find from her book/experiences. And I am glad this book reminded a doctor that patients are humans going though an experience that can be really tough to cope with at times. I just hope that those of us who come out the other side of this NOT changed for the better; who did not handle everything bad thing that happened with grace and courage (or whatever the current buzz words are now) are not then negatively judged. One of the plastic surgeons I dealt with told me that "all my patients are grateful they have choices for reconstruction. You are angry". Yup I sure was angry. Angry I had BC again, Angry I couldn't have seen into the future to cut off both boobs to begin with (in neither case was lumpectomy an option). Angry you could only do a free tram once and that wasn't an option for the other side (corollary to angry I didn't have both hacked off). Angry that all the other options open had downsides I didn't want to deal with… (I did not use him since he required grateful patients and I was incapable of being grateful, he was incapable of dealing with angry). I was being judged for not being grateful. Sure I was grateful in an existential way - that I lived in American where I had choices and not Cambodia where I would not have had choices… but I sure was not grateful in the practical, day to day way he expected me to be. THAT is my problem with inspirational/transformational stories. They set up expectations that others will think, feel, behave the same way. The 'cancer sucks and my experiences sucked and I got nothing out of this to make it worth my while to live though something that sucked and life sucked while having cancer' books don't get published. Unless you can write it with humor and grace and that, in my opinion, invalidates/sugar coats the cancer sucks and I didn't get the reward of personal growth, insight, blah blah blah, reality… out of going though this. Further it is not currently accepted to talk about 'this sucks and I got nothing out of it but bad stuff' cancer experiences - I would imagine partly because that makes people uncomfortable and partly because it is somehow easier to justify the suffering if there is a silver lining/meaning to get from being a member of the cancer club. Also some newly diagnosed patients, already freaking out, would freak out even more if there weren't 'the cup is half full' and 'there will be a reward for living though this' books out there. As humans we try to make meaning from experiences, even the experiences resulting from the random sh*t that falls into our lives, even if no meaning exists there. More power to you if you can do that. I can't with cancer. There is not one thing I have learned along the way that I would not willing give up not to have had the experiences I have had. Not one. There is also not one thing I learned along the way that I couldn't have learned from much less painful and traumatic experiences. Not one. Cancer sucks and so does what it has done to my life. And I hate pink ribbons and the extra expectations put on breast cancer patients that aren't put on other kinds of cancer patients thank you (not) the breast cancer marketing machine. And so, like many others, I put one foot in front of the other hoping someday I can put cancer in the past tense (unlikely since the newest one currently has no cure but maybe I will get lucky and a cure will be discovered before it is too late). Cancer is not who I am, it is what I have. And what I have sucks.
    • Paula Kaplan-Reiss
      The irony is I agree with virtually everything you say. I had no intentions of being inspirational when I started blogging. I just shared what was going on with me on the inside and on the outside. I probably would't have written a thing if I hadn't been told I had a pretty good chance of living. I certainly avoided reading ANYTHING, including Dr. Salwitz's blog until my treatment was virtually over. I definitely agree that there was nothing I got out of this experience that was very positive....EXCEPT....there are great doctors out there, my friends and family were wonderful to me, and I realized I liked to write. But, like you, I could have lived without cancer happily and given up these realizations. I also know that I am 2 years cancer free but that could change on the drop of a dime. I totally know what you mean about the memoirs which have happy endings which sell and the tragic ones which remain unpublished and unread, unless it's fiction. My husband wrote a book about our son who is very troubled (Desperate Love, A Father's Memoir). It does not have a happy ending and no one wanted to publish it. It was too depressing. And no, I have not turned into a better person for enduring endless trouble and chaos. So, I empathize with and understand your anger. Who wouldn't feel that way. If I were you, I wouldn't want to read my book either. When people tell me my attitude must have helped in my recovery, I respond, "No, I was just lucky." Sadly, that's the truth. I wouldn't want anyone to feel pressured to be the 'upbeat, tough, brave, courageous cancer patient.' There is nothing realistic about that. I wish you strength.
      • Liz
        Troubled kids are so much fun aren't they (not!) - especially combined with a cancer gig. I have a kid I adopted when she was 10. Attachment disorder, now borderline personality disorder, mood disorder, etc. etc. etc. The year I had 2 cancers at once triggered every problem she had (I am a single parent) - that year she won tickets to jail 4 times, a psych ward… now (at 24) has 2 kids 10.5 months apart and working on a 3rd (baby is 2 months old), driving on a suspended license (not in my car) with a warrant out for her arrest for the ticket… Several months ago she killed, on purpose, my 2.5 year old sweet little kitty I rescued from the side of the highway. Add to that the only thing between me and homelessness is a go fund me account that needs more funds - no clue how to get that to go viral to fund it as the adoption community has mostly paid it forward for me for help I give there (well that fund and a temp job involving manual labor and also selling plants in the walmart parking lot in the deep south so it is hot hot hot… (had been laid off from my faculty job due to cancer - have an EEOC complaint pending, COBRA runs out the end of June and medicaid was not expanded here - no subsidy for me, and no insurance either) No one would want to read that story either LOL. Real bummer. I was considering running away from home - the only problem is I'd have to bring myself with me. I need a life transplant. A friend and I decided we needed to throw a pity party and decided we needed violins, kleenex, comfort food, no rain - but on second thought we decided we needed to be almost rained out and the ground needed to be soggy, bugs needed to be biting… after all we were supposed to be miserable right? We needed to hire people to wail for us, pat us on the back and say tisk tisk things will look up and then look appropriately appalled when we glared at them and asked them in what universe do they live where a positive attitude will solve the problems. Have I left anything out? LOL

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