October 17, 2009

One of my guilty pleasures is sitting in my Adirondack chair and reading the New York Times--the real paper deal, newsprint smudges and all.  On a balmy October day in 2008, I sat out back, fascinated by an article about a Pilates instructor (mid-30’s) who learned she needed to undergo bilateral mastectomy and wasn’t going to settle for waking up with no breasts and waiting for her reconstruction.  I was even more intrigued to learn about the procedure she underwent, utilizing her abdominal tissue and fat to make the shape of breasts and attaching blood vessels, while sparing her own skin (not using the areola though—that generally needs to go)—a DIEP flap reconstruction.  Little did I know that tucking this article away in my mind would help me make one of the most important decisions in my life.

The cancer entirely filled the ducts in my left breast, from behind the nipple back to the chest wall, with a 6 cm. mass at the 6 o/clock position.  There were suspicious cells in the right breast, in the same 6 o’ clock position—remember that I had a “clean” mammogram just 10 months before.  Could I have the left breast removed and then find out in six months that I needed a mastectomy of the right breast as well?  I decided I couldn’t live with the anxiety.  The plan put forth to me in Lancaster was that I would have both breasts removed, the breast tissue would be biopsied and then we would know if I would undergo radiation and/or chemotherapy.  I was told if we knew that I definitely didn’t need radiation that I could have immediate reconstruction, but it would be bad for the reconstructed breast to receive radiation. What would the deciding factor be?  If the cancer had spread out of the breast.  I just wasn’t able to accept that plan, so we made some other appointments. 

Among other things, a medical oncologist really helped me think through the sensation loss issues—believe me, I had already realized what a devastating aspect that would be for me.  I’ll come back to this in another entry.  I was petrified at this point, we had no idea if the cancer had left the breast.  Another aspect that was completely demoralizing was that I was not scheduled to see the plastic surgeon until after my breast had been removed.  Doesn’t he want to see how I look now?  I also knew that a skin-sparing reconstruction could be done, if performed on the same day.  I had seen the photos of women who opted for delayed reconstruction.  That sent me into tears.  Yes, I wanted to live, but I also wanted to have the least amount of scars, and one surgery instead of two.  What we learned at this point was that you need to advocate for the best plan for yourself by seeing every member of the medical team that will be a part of your treatment and recovery--PRIOR TO SURGERY.  It was during our second visit with the general surgeon I had consulted for the mastectomy, that I brought up my desire for the DIEP flap reconstruction option.  I was told that DIEP flap is not performed by anyone in Lancaster.  This brings me to my next encouragement point.  Get a second and third opinion.  More on that another day.

I know that some of you are thinking, you are lucky to be alive.   I wholeheartedly agree with you.  I just spent the day taking one of my daughters to get an updo and her nails done for homecoming and doing the makeup and finishing touches for my other daughter as they are both at Homecoming tonight.  My son and I are totally bummed that Notre Dame lost against USC tonight.  I spent last Sunday biking and happening upon the cranberry harvest in Cape Cod with my high school sweetheart (whom I have been married to for 25 years).  I am so thankful to be alive, no doubt.  Every day carries blessings that I so want to be here for. 

Like you, I also want to feel beautiful and I want to look in the mirror and feel that I am the same person.  If you have not undergone a mastectomy, think about how hard you can be on yourself when you look at your body (not having had parts removed).  Imagine that instead of your breasts you had scars, or you had mounds that looked like breasts, but you couldn’t feel anything.  Prior to March 3, 2009, I never had an inkling of what to would truly be like to lose the functionality of my breasts.  I tried to imagine it, because I knew it was going to be my reality. I will never have my breasts back, or the functions of them.  To put it very bluntly, that little chill that runs down your spine and throughout your nervous system at someone’s touch to your breast, is a possibility that is gone forever for me.  A loss that I grieve every day.   Certainly new sensory pathways can be followed, but a loss in fact. You will hear people say, or you may have said, "If I am ever diagnosed with breast cancer, I would have both breasts removed, regardless of the extent of the cancer or involvement in both breasts, no doubt."  That is a very easy thing to have roll off of your tongue before it is actually you.  Each cancer patient's diagnosis is different from the next's, as is her support system and her specific definition of quality of life FOR HER.  

It is not just about prolonging your life, it is about multiplying your days (surviving) and enjoying the best quality of life possible during the rest of your life (thriving).  My body image, femininity and sexuality has been deeply impacted by the loss of my breasts.  (Yes, I know it looks like they are still there--Dr. Serletti is a miracle worker, as is my breast surgeon, Marcia Boraas, who left me with no visible scars!) So a huge part of the work toward flourishing is reconciling, in my on mind, that it appears that I have breasts, but they don't function.  How do I integrate this actuality into my conception of myself as a whole person?

Through a very funny twist of connections, I was able to take part in a photography experience last week that has had an extremely positive effect on my self-esteem and outlook.  Beth Cardwell, a local photographer, takes part in THINK PINK PHOTOGRAPHY, an organization that allows for breast cancer patients and survivors to receive a sitting at no charge, along with ten free prints from that session.  The photos are posted on Beth’s gallery and if anyone chooses to purchase photos from that sitting, the proceeds go to furthering this endeavor.  It is so much more than that though!

I had never met Beth and after about two minutes, it was as if we were very comfortable friends.  She made me feel so relaxed and she really focused on getting my personality to shine through.  She was looking at me as a whole person, not simply a woman defined by cancer.  She highlighted my strengths as she asked questions and gave encouragement.  I had a lightbulb moment when I really believed that beauty can come out of this horrendous ordeal.  The quirky aspect of this is that Allison Schwartz from Channel 11 news had contacted both of us independently to see if they could do a story on her photography with cancer patients/survivors and my story of navigating this path as a young woman with no risk factors.  CRAZY!

Click on this link and you’ll get a glimpse of my lunch break last Tuesday!  I hope you can join in on Tuesday night for the Live Chat and ask any questions you may have.  I am headed for the second step of my reconstructive surgery on Monday morning---the areolar/nipple construction, another step toward wholeness.

http://edisk.fandm.edu/michael.murray/Shield/Kirsten.mov