My Double Mastectomy: Three Years Later

Double Mastectomy: Three Years Later

Double Mastectomy: Three Years Later

May 15, 2014, I was sitting in a hospital room recovering from a double mastectomy.  Why am I smiling so much in the photo?  The answer: I just finished a phone conversation with my parents.  They live a little over one thousand miles from me.  I couldn’t believe how little pain I was in and how good I felt.  It was important to me that they hear my voice.

Both my Mother and Father were in disbelief that I was calling them. Just 24 hours before, they were on alert at their home waiting for the phone call to let them know I was out of surgery and doing well.  When I mentioned to them I was heading home in a couple of hours after the call, they were even more surprised.  I could hear the sense of relief in their voices over the phone. That gave me great joy. Knowing they felt better made me feel better.

The Emotional Caregiver

When you are told, you have breast cancer, it is difficult enough to process the information yourself.  When you begin to tell friends and family you somehow become an emotional caregiver for them.  They ask so many questions out of love and concern.  When I felt good the morning after my mastectomy, I wanted them to know.  I wanted to comfort them and relieve them of any worry.

I did feel good compared to the night before when I was in recovery.  I did not wake up well.  I got sick twice trying to shake off the nausea and fogginess of the anesthesia. My back was really aching no matter how much the nurse massaged it for me.  Two days after I returned home I was amazed I was walking the neighborhood; slowly, but I was doing it.

At Home and Recovering

My chest felt tight and very bizarre.  I tried to wipe something that spilled on the counter top and it was as if there was no strength to put any pressure on the cloth I was using.  I carried around a pain pump and two drains.  I learned to strip the drains myself even though I didn’t like the feel of them at all.  I could feel the tubing moving inside my now flat chest wall.

I carried the pain pump in a fanny pack.  The pump was about the size of a tennis ball but was becoming very annoying because of the weight of it.  I called the nurse after three days to let her know my discomfort with the pain ball  and she told me I could remove it myself.  “OK, I can do this,” I thought.  I stood in front of the mirror and followed her instruction and gently began pulling on the fine tube to remove it.  It didn’t cause any pain but the shocking part was how long that tube was. It was thin and they had looped it internally around the chest area to help manage post-surgical pain.   I pulled, and pulled, and pulled.  I began to get a bit panicked when I couldn’t find the end of it.  I sat down on a chair feeling light headed.  Finally, after what seemed like a football field of this fine tubing I reached the end.  Whew!  Relief!

Suppressing Emotions

What I didn’t realize the first few days I was home was that I was suppressing emotions and the weight of losing my breasts.  I was in triage mode taking care of myself.  I tried to put on a brave face because I physically didn’t feel too bad.  I wanted to be the strong warrior.  I got rid of my cancer and I was up and about, walking the neighborhood, making phone calls to family.  I had so much love and support, flowers, cards, and phone calls how could I possibly act any other way? I owed it to my loved ones to be courageous!

Although I could see the flatness of my chest I was still covered in Tegaderm, a waterproof transparent dressing, over my mastectomy site.  I went back to see my breast surgeon less than a week after surgery and she removed the Tegaderm dressing.  It wasn’t until I got home that day and saw the first full view of my mastectomy without any dressing that I began to process the emotional pain of what I had been through.

I hated the way I looked.  What am I going to wear when I go out in public?  Will people stare at my concave chest? Putting clothes on my now amputated breasts was nothing short of humiliating to me.  My soft breast giving me shape and feminine form just days before were gone.  What remained was skin and nipples that looked wrinkled, folded, and inexplicably deformed to me.  I could feel the bony outline of my sternum.  Although my chest area was now numb to the touch, I felt the pressure of my hand against my chest wall.

My brain was trying to process what my body once had and it wasn’t registering with my emotional self.  I finally wept and mourned the loss of my breasts.  I crawled into an emotional hole for seven long months.  I didn’t handle my mastectomy and the loss of my breasts well.

Mourning After Mastectomy is Part of the Process

I look back now and think this was a difficult but important process to go through.  Putting on a brave face wasn’t working any longer.  Lying in bed at night and not having the soft tissue of my breasts to keep my chest warm was a stark feeling.  It’s truly difficult to put it into words unless you have physically felt it and been through it.  I sense that many amputees go through this sense of loss and mourning of a body part.

I wondered what my husband was thinking about this now deformed and breast less wife.  I remember the day of my mastectomy just before we left for the hospital.  I didn’t wear a bra that morning because I knew I wouldn’t need it when I came home from hospital.  I remember him unbuttoning my blouse and saying, “Let me take one more look.”  After my mastectomy, he would glance at me when I stepped out of the shower, curious, I’m sure.  I was self-conscious and told him I hated this.  He would look at me and say, “Well, at least you’re here.”  It was honestly little comfort to me at the time but I know he meant it with the sincerest heart.

The Happy Ending ~ Breast Reconstruction

That was three years ago.  There is a happy ending to my story although it didn’t happen without its own difficult chapters.  Seven months after I lost my breasts to cancer, I used my own tissue to rebuild them through a process that ultimately took three surgeries, travel, personal time, and the support of family and friends.  I chose to have DIEP flap breast reconstruction.

There are amazing and talented micro-surgeons across the US and world who perform this surgery.  I had seven months to research a board certified plastic surgeon and found one of the finest in the country.  I know many women who live without having breast reconstruction after mastectomy for a number of reasons. I feel blessed beyond words to say that my reconstruction was not only successful but life changing.  Now, through a Foundation that I opened in 2016, I educate other women and men about options for breast reconstruction.

I don’t want anyone to be without this information.  It is a very personal choice to rebuild your breasts after mastectomy but you can’t make that decision without the information and resources needed to do that. For me it was a decision that was well worth it!

Did you choose to have breast reconstruction after mastectomy? I celebrate the fact that three years ago I had no breasts and today I do!

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Disclaimer

References made to my surgical group, surgeon and healthcare team are made because they are aligned with my values and met my criterion after I did research of their practices and success rates. Any other healthcare provider that displays the same skill, compassion education and outreach to patients will be given consideration and recognition on this website.  The information contained on this website is not a substitute for or should be construed as medical advice. Please consult a licensed physician for medical advice.

7 Replies to “My Double Mastectomy: Three Years Later”

  1. Crystal

    I appreciate your story and this blog. I am having my procedure performed in two days…. the bilateral mastectomy with diep flap. I did additional research with the help of your site. I also appreciate that im a lil “fluffy” so that i can have this procedure done. It has been at emotional rollercoaster, but im grateful

    • Terri Post author

      Hello Crystal, I hope you are now on the “flap side” as I call it, and are doing well. It is an emotional roller coaster. Thank you for your kind words and I am glad the site offered some help for you. Wishing you all the best!

      • Crystal

        Thank you, in recovery now. Kind of tough, sore and some pain but nevertheless grateful.

  2. Elaine Martin

    Hello Terri, I am finding comfort in your website. I had a bilateral masectomy two weeks ago. The plan was immediate DIEP flap reconstruction. However, during surgery they found that it has spread to the lymph nodes on the left side. The reconstruction will be delayed until I am done with radiation\chemo. I knew this was a possibility but was not expecting it. I am waiting for the oncotype (DNA testing) results to come back. This will determine the protocol for the treatment. Right now am am in a “holding pattern”.

    • Terri Post author

      Hi Elaine. I am so glad you are finding comfort in my website. That is the intent so I appreciate that a lot. Your situation is similar to mine. I did not have lymph node involvement but due to a number of other tests, oncotype being one of them, I ended up being a delayed DIEP flap and was in that “holding pattern” for seven months. I know it’s not easy. Please let me know if there is anything I can do to make things easier for you. I have a resource page on my website when you are ready to begin looking for plastic surgeons to do your DIEP flap unless you have already found one. I truly do know what you are going through I sincerely wish you all the best.

      • Elaine Martin

        Thanks for responding Terri. Electronic communication is helping to keep me sane right now. I still have drains in so I’m not getting as much social contact as I am used to. My next phase of treatment will be chemo and\or radiation. Did you experience either of these?

        • Terri Post author

          Hello Eliane. On-line/electronic communication is an important part of patients staying connected through surgery and treatment so thank you for reaching out again. I had both chemo and radiation 15 years ago. You’ll get through it. It’s not easy but protocols have changed and improved since I had it. Eat healthy, try to exercise when you can and feel like it, and I recommend finding a support group, perhaps through your cancer center, if it feels right. Wishing you all the best.

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