Dealing with Deformities Caused by Cancer – guest post

As part of the current Being Cancer Book Club discussion, I received an email from a reader concerning how Robert Schimmel dealt with a deformity issue in his book Cancer on $5 a Day. Jo Ann mentioned her own issues in dealing with mastectomy, its effect on her self-image and own recovering feeling of well-being.  In fact she had just written a post on the subject which I am proud to republish here.  As Jo Ann points out, it is important to remember that we all share this common experience of cancer but as distinct individuals.  There are few right and wrong decisions.  We make decisions from unique personas, drawing from some secret well deep within.  Jo Ann writes at Ooops…I’m still here

JoAnn

Dealing with Deformities Caused by Cancer

The greatest gift the on-line cancer community has given me is an honest discussion of cancer topics.  I know survivors, but none of them have had exactly the same cancer, surgery or treatment.  The Internet offers me more information than they could ever provide, and that information has helped me in my healing journey.  In an attempt to give back, I will discuss a terribly difficult subject, that you would never hear discussed at the neighbourhood book club: Dealing with Deformities Caused by Cancer.

Let me tell you a story.  A survivor I know made the comment to me that her doctors wouldn’t let her have a mastectomy, but if she did have one she wouldn’t bother with reconstruction.  I have had two mastectomies followed by reconstruction.  The way she said her piece gave me the feeling that she thought she was superior to me, because she wouldn’t need plastic surgery. Hmmmmmmm.

I know that no survivor should, by the unwritten laws of survivordom, criticise the treatment choices of another survivor.  Our cancers, bodies and lives are all different.  What we share, and what binds us, is the horror of the diagnosisWe are forever equaled by that moment in the doctor’s office. I chose not to get into that with her, as I knew she would take offence.  In hindsight, I should have changed the subject, but I didn’t. I told her about my experience.

“Well, that’s fine that you wouldn’t have reconstruction and that probably would be the best thing for you,” I said, “but I have to tell you about my experience.  When they do a mastectomy they scoop the breast tissue out, much like one scoops out a boiled egg.  Imagine that for a minute.  You are not left flat, but concave.”  She looked unmoved.  “If I could have had mastectomies and been left flat like a little girl, I  would have been happy, but that’s not what happened.  I was left hollowed out …with Frankenstein scars.”  She shrugged, so I continued,  “I lived with one prosthetic for over a year and hated it.  I walked funny.  It was heavy.  It aggravated my lymphodema and it reminded me daily of my cancer.  I felt ugly, and deformed, and …ugly.”  She eyed me with a patient look of disdain as if to say that she would be a stronger woman in my situation.  “So, for me,” I continued, “reconstruction was a wonderful thing.  It’s not that I didn’t feel whole, a phrase often used to describe how women feel when they have had their breasts removed and it wasn’t that I am overly vain, it’s just that it helped me feel better.”

Needless to say, I didn’t change her mind.  I know … I shouldn’t need to.

Please, understand that I’m not saying that everyone who experiences a mastectomy feels the way that I felt, or should feel the way that I felt.  Nor, am I saying that every woman who has a mastectomy should get reconstruction.  What’s right for one person, may not be right for another. It is a very personal and individual decision.

I am telling you my story, so that you can add it to the other stories and gain a fuller (not intended as a pun, but it is midnight) understanding of the cancer experience.

from: Ooops…I’m still here

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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