Saturday, February 18, 2012

Norm and Me

Last week I was interviewed on a radio show to promote my new book Now What? A Patient’s Guide to Recovery After Mastectomy. The station was WTCM 580 am in Michigan, "covering over 20 counties spanning from Lansing to Canada".  Although this was not my first radio show (I did a similar program in 2010 with my plastic surgeon; we had about six listeners), I will admit I was a little bit nervous.  One of my sisters-– always protective and perhaps worried that I would be stumbling into a political minefield where I would be grilled about the recent Komen/Planned Parenthood mammogram debacle -- went on a recon mission, listening to the show’s earlier pod casts.  She reported back via email that Norm Jones, the host, was “very chatty and kind…funny”.

Norm was, indeed, funny and chatty and kept the conversation light. At times he phrased things in a way that left me wondering where the actual question was in all that he was saying. But I did my best to keep up and answer his questions clearly and concisely despite the fact that my thoughts were racing a thousand miles an hour, much faster than I could produce coherent speech. Remember: I write stuff down.  I could labor for hours over a single sentence, polishing it to perfection.  Getting my point across exactly. Speaking, on the other hand, is not my forte.  So on the off chance that they post a pod cast of our interview and I have somehow avoided embarrassing myself completely, I will post it here for all to enjoy.

After the interview I got to thinking that a lot of the questions that Norm and his listeners asked might be questions that other people would have as well. So here is a quick recap of some of the questions and answers.

One of the listeners asked it if is possible to breastfeed after mastectomy.  I thought that was a really great question. If you have had a single mastectomy there should be no reason that you can’t breastfeed with the other breast. That said, I’m pretty sure that the person who asked this question was referring to breastfeeding with the involved breast after mastectomy.  And to that question the answer is “no”. As I explained to Norm, with the advent of skin and nipple sparing mastectomies and new techniques in breast reconstruction, it is possible for a woman to have a very natural looking breast after mastectomy with reconstruction.  Still though, the essential structures that would produce and carry the milk for breastfeeding (i.e., the lobules and milk ducts) have been removed, thereby making breastfeeding impossible with that breast.

Norm also brought up the topic of celebrities who have had mastectomies, particularly Christina Applegate.  Norm mentioned that she had undergone a double mastectomy, perhaps without really “needing” one.  I gently pointed out to Norm that Christina Applegate -- and many other women who undergo mastectomies after breast cancer diagnosis or as a prophylactic measure -- have tested positive for one of the genetic mutations known as BRCA1 or BRCA2.  This gene puts them at significant risk (upwards of 60 percent chance) for developing breast cancer in their lifetimes. In Christina Applegate’s situation, she had already been diagnosed with cancer in one breast, so she made the decision to remove the other breast as a prophylactic measure. That is when the breast is removed to head of cancer from developing there in the future.  Of course I can only imagine what her thought process might have been when making this decision but maybe it went something like this:  “I’m a young woman, I have known genetic mutation, I already have breast cancer in one breast, I want to start a family and not have to worry about ongoing surveillance and a breast cancer diagnosis at every turn. I think a bilateral mastectomy might be the way to go.”  I completely understand her decision and made the same decision myself (minus the confirmed genetic mutation but with a strong family history of breast cancer).  And even if I hadn’t made the same decision, who am I, who is anyone to judge another woman’s decisions about mastectomy?

Norm also asked about breast reconstruction after mastectomy and wanted to know my feelings about it.  I told him I encourage every woman to make her own decisions regarding breast reconstruction after mastectomy. I chose breast reconstruction but that was my choice; it might not be right for everyone.  I feel that this is a deeply personal decision. I believe that every woman should have all of the options laid out for her in plain and accessible language but that ultimately the decision to reconstruct or not reconstruct should be hers and hers alone.  I hope I got that point across to Norm and his listeners. 

I would like to thank Norm for inviting me on his show.  As I told him on the air, mastectomy is not a “sexy topic” and a lot of people in the media are reluctant to have this conversation or they only want to have it during the month of October, when it can be safely shrouded in pink.  So anyway Norm, thanks for stepping up.

Saturday, January 14, 2012

The Story of "Now What?"

This is the story of how I came to write Now What? A Patient's Guide to Recovery After Mastectomy.  I wrote this piece for the 'What Survivors Know' section of the Support Connection Fall 2011 Newsletter.  Support Connection provides counseling and support services to women who have been diagnosed with breast or ovarian cancer.  They are a phenomenal organization made up of very caring women; they offer peer counseling and a nationwide toll free support hotline.

During January of 2011 I found myself home with the kids for what turned out to be many... many snow days.  Some weeks we would only have two days of school in a week! It was an unusual winter, the likes of which we haven't experienced in our previous years here in New York. Between shoveling the driveway, sipping cups of cocoa, snuggling in the bed watching movies on demand (and trying to pretend like I'm not really in it for the nap), I had the idea to start work on a brochure about mastectomy recovery. Of course that "brochure" later became a book.  And so it goes...check it out, page 7.

http://www.supportconnection.org/pdf/pdf2012/Walk2011Newsletter.pdf

Saturday, December 31, 2011

Now What? Blogging, etc.

Welcome!  Today is an exciting day because my book:  Now What?  A Patient's Guide to Recovery After Mastectomy (Demos Health Publishing, 2012) was released!  As the title says, the book is about mastectomy recovery and it includes all of the most important information that women need when preparing for and recovering from mastectomy:  information from what to bring to the hospital and how to prepare yourself emotionally for mastectomy, to what it feels like when you wake up and all that follows with the recovery process.  I couldn't have written this book without the help of the women of FORCE, Facing Our Risk of Cancer Empowered and Support Connection (see links below).  Not only did I turn to the women of FORCE and Support Connection to aid me in my own recovery after my breast cancer diagnosis but I also turned to them when I was doing research for the book. They completed surveys and shared their stories of recovery so that -- going forward -- no one will feel alone or unprepared when facing mastectomy.

Please check in with my blog from time to time. I will post stories and articles about mastectomy, breast cancer recovery, and other related topics. Be well!