The Bold Decision To Go Flat

My sister, Kaye, made the decision to stop cancer before it could start by having a bilateral mastectomy two weeks ago.  Making her decision even bolder, she has decided to stay flat (or breast free).  I would love to share why she made her decision, what the experience has been like for her, and what it was like for me to be there for her surgery and the beginning of her recovery in case you ever find yourself in Kaye’s situation or mine.  Or maybe, as a student of life’s adversities and triumphs, you are simply curious.

Kaye found out she has the BRCA 2 mutation I have and decided quickly to have her ovaries and fallopian tubes removed (as well as her uterus because it had given her trouble in the past).  She had that surgery in October.  That decision was an easier one for her because she had already gone through menopause.  Next, she was encouraged by her trusted primary care doctor to meet with a breast surgeon to discuss her options because in her doctor’s words, it wasn’t a matter of if she would get breast cancer, but when.

She learned that if she chose not to have a mastectomy, she would need not only a mammogram once a year, but an MRI once a year as well.  In other words, she would have to psychologically gear up for an intense breast exam every six months.  And a breast MRI is very uncomfortable.  She also learned the ins and outs of having a mastectomy, from the drains, to the incision care, to the recovery process.  And that if she wanted to have reconstruction, it would mean more surgeries and more painful recoveries. 

Both options—mastectomy and “watch and wait”, were scary.  But in the end, Kaye decided that her highest priority was to not ever have breast cancer.  She said that after watching me go through chemotherapy and radiation, she didn’t think she could do it.  And she also wanted to be pain free and back to full strength as quickly as possible.  So she started looking at pictures of women who had had mastectomies and stayed flat.  In her words she “desensitized herself” to what her chest would look like if she made that choice.  Through long talks with her husband (and making him look at pictures too!), she made the decision to go flat with his full support.

In the days leading up to the surgery, she worried about waking up from the surgery unhappy with how she looked. She imagined that her husband might regret their decision. She worried about the pain and recovery and being grossed out by the drains. But she knew that she had made the right decision for her and just wanted the anticipation to be over. She was extremely calm and brave on the morning of her surgery.

Kaye and I had one ground rule during this time—whatever emotion comes up needs to come out!  No stuffing emotions down.  I was afraid that seeing her suffer would make me cry and that it might bring up emotions from my experience last year, but we decided that was a good thing. 

We were all sad in the recovery room (Kaye, her husband, and me) immediately following surgery. Anesthesia makes Kaye emotional anyway, plus she heartbreakingly kept trying to look down her hospital gown to confirm that her breasts were gone. She cried and cried.  She looked so small and fragile all wrapped up in blankets. We comforted her as best we could and the nurse gave her something to help her go back to sleep.

That evening in her hospital room, she was feeling much better and we had lots of laughs.  Kaye was able to walk around the nurses station and go to the bathroom by herself.  Under her breath, she said to each person she passed in the hall that she “had no boobs”.  We decided she was simply getting used to the idea.  She hurt, but it was tolerable with her pain meds.  And each day after she returned home, she winced less and laughed more.  We were able to switch her from the strong meds to Tylenol and Ibuprofen on the third day home.

Kaye looked at her chest often to get used to her incision and the absence of her breasts.  We decided to call the place her breasts were her “woobs”.  Warrior boobs.  “My woobs hurt” she would say and it always made us chuckle.  Her incision looks really good.  I’ve included a picture at the bottom of this post.  Look if you are feeling brave and skip it if it’s too much.

Lastly, what was it like for me to be there for Kaye just shy of a year of my own bilateral mastectomy (with reconstruction) and finding out that the cancer had spread to lymph nodes? Honestly, it felt really good.  I loved so much being able to help Kaye through by not only tending to her basic needs, but by comforting her and helping her process as best I could. It feels good to help someone I love always, but to help by tapping into what I learned from my struggle and to use my lessons learned for good, really makes those challenges feel worthwhile.  And I have felt so proud of Kaye and honored to witness her boldassery.

I had a really good cry at the hospital that first night after Kaye had gone to sleep.  I felt so sad for her pain and angry that she has to go through this.  But after letting it all out, I remembered that there were many people in the hospital that night who would never go home.  We are the lucky ones.  We get to continue to love our people and live more days.  There’s no telling how many, but I will never take that for granted.  Neither of us will. 

Here is a picture of Kaye’s chest two days after her surgery. It’s not gross, but it is very real…