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Easing the transition to an extraordinary life

My Story

 

Hello, friends. Today is my four year anniversary of being diagnosed with cancer. One more year and I will have made it to my five year anniversary, a red letter day for anyone recovering from this disease.  

 

Also today, I am sharing with you my own personal journey to my “New Usual.” It is really hard to put all of this out there, but I know some very brave women who shared their own stories with me when this happened and it made all the difference.

 

If you have a deep family history of cancer as I do, then I encourage you to get genetic testing and arm yourself with as much information as you can to make the right choices for your ongoing good health.  Deep breath. Here we go.

 

 

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I applaud the world’s biggest celebrity for sharing her story.  Maybe now the idea of a preventative mastectomy will lose some of the shock and strangeness associated with removing your breasts to save your life.

I, too, was faced with this decision.  Although my situation was markedly different, it was agonizing just the same. I was newly 40, and single. But most important to me at the time was that my mother, and best friend, was already deep in the trenches of her own battle against breast cancer. My number one priority was her.

My mom was diagnosed at age 58.  My maternal grandmother had both breast and ovarian cancer, and survived both.  My great-grandmother had ovarian cancer and several relatives on her side of the family had breast, ovarian or prostate cancer.  See the pattern here?  With this family tree, one might assume I would be ready for some genetic testing. Nope, I had time.  

Based on my family history, my doctor urged that I meet with a breast surgeon for a consultation.  My mom had tested positive for the gene, but only had the test after she had been diagnosed and went through a mastectomy, chemotherapy and radiation.  She had continually asked me to get tested.  But in my mind, I had time. I was consumed by my very busy, stressful job, and helping my mom through her illness.  I felt like I needed to get her through that first and would deal with myself later.  I had time.

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© 2013 Group G Enterprises, LLC

The turning point for me was meeting a doctor who just wouldn’t take no for an answer. She convinced me that she was the best defense against anything happening to me, and insisted that I get the genetic test right away. She would take a specific approach to treating me based on if I had the gene or not. Eventually I made the appointment. But I still had time.

I went to the GenRISK Adult Genetics Program at Cedars-Sinai Medical Center in Los Angeles. They are very dedicated to educating patients on the physical risks involved with a positive result for gene mutation. They also discuss the medical options for treatment along with the emotional aspects of it. However, none of that prepared me for the day several weeks later when I found out that I, in fact, was a carrier of the BRCA2 gene.  I went by myself (huge mistake) and was completely stunned by the positive results. 

The BRCA2 gene can increase the risk of lifetime breast or ovarian cancer by up to 87%. It also increases the risk of pancreatic, colon, thyroid and prostate cancer, and melanoma.  My family history (11 people in three generations on my mother’s side) combined with the presence of the gene meant I was a ticking time bomb. Should I get a prophylactic bilateral mastectomy? Should I wait? In my mind, as a single girl, I also wondered who on earth would ever want to marry someone who was all carved up like a turkey?  Dramatic, but it felt that way. I was shocked and scared but also felt so lucky that I had wonderful parents, family and friends supporting me throughout this ordeal.

After very careful consideration and talking in depth about it with my parents, I made the decision to have the preventative surgery.  I also decided to wait a few months (I had time) so that I had a chance to do research, get used to the idea, and get some things done before my surgery. I would have a preventative double mastectomy with immediate reconstruction.  I also dove headfirst into MRIs, ultrasounds, and every other test in the world as part of my preventative care.  Surprisingly, during that period before surgery, I met (and married!) my amazing husband.  He completely supported my decision, and knowing that made all the difference in how I felt as a woman. 

Through my wonderful friends, I was able to connect to a few lovely, generous women who were BRCA positive and had already been through the procedure.  They were kind enough to speak with me and answer all of my millions of questions.  I am so grateful for their giving spirit.  Hearing one of these women say, “You’ll get through it. And you will be fine” made all the difference in the world to me. That’s what I needed to hear.

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My next step was figuring out what kind of surgery to have.  I decided on the newest procedure: a nipple and skin sparing mastectomy.  That means all of my internal breast tissue would be removed, but outwardly, I would essentially look the same.  My mom had gone through the traditional mastectomy, and didn’t recommend parts of it for me. I interviewed plastic surgeons, and, this time, made sure to bring my devoted girlfriends with me, so I wouldn’t have to go alone. (Note here: this is tremendously helpful.  Take someone with you who can write down and remember what was said, because trust me, it will all be a blur).  

Right before my surgery was scheduled, we found out that my mom would have to have chemo again, as it was now spreading to more areas in her body.  Regardless, she and my stepdad (and my hubby, and dear friends) were with me as I went in to surgery.  Everything went well. Six hours later, the doctor had removed all of my breast tissue and my plastic surgeon had embedded expanders for the implants. Then some time later, implants would be inserted and voila! New me!

After my surgery, everything was moving along and I was hoping to go home. Then, my doctor came in, and I could tell by the look on her face that something was not right.  She said the pathology reports showed that I already had cancer in both breasts, undetected even with all of those previous tests.  A punch in the face would have rendered me less stunned. She continued, telling me I would need the strongest kind of chemo immediately. The tumors were tested and I had a 41% chance of reoccurrence.  Most people have 20%.  41% is super high, and she wasn’t messing around.  Also, if I was going to do anything about safeguarding my fertility, I needed to do it right away, before I started chemo. Tick. Tock. Time just ran out.

In an instant, all of the fear and anxiety that I had been feeling about the surgery made sense.  I think that somewhere, deep down, I knew something was wrong.  I had spent countless nights beforehand crying in my husband’s arms, terrified and questioning my decision.  Having that surgery, as my doctor told me later that day, most certainly saved my life.  I have my mom to thank for that, for being brave enough to have the genetic test in the first place, and for pushing me to have it myself. I also have to give my surgeon, Dr. Kristi Funk, props for ignoring my ambivalence and pushing me to get on board. December 14th, 2009 was my mastectomy.  December 16th was my diagnosis.  My life has never been the same.

Taking in the sunset with Incredi-Dog ©2013 Group G Enterprises,LLC

But that’s a good thing. I have found through this illness, through the toughest parts of it, the chemotherapy, the hair loss, the multiple surgeries, suffering through every side effect there is, seeing my body cut and scarred and unrecognizable, that there is good in it.  I have so much more compassion for others. I am less judgmental, less afraid, more grateful, more gracious.  I feel kindness and love towards not only the people in my life who reached out and cared for me, but also towards the people who are friends and colleagues and relatives of the people in my life who prayed for me or sent notes of encouragement or asked how I was doing.  And also towards complete and total strangers, who I passed in the grocery store or in the waiting room of a doctor’s office, who shared a warm smile or a look of knowing.  All of this has touched me and changed me and inspired me.

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Mom and I on our first day of chemo. ©2013 Group G Enterprises, LLC

Immediately after the surgery, I underwent fertility treatments to preserve my eggs and then I started chemo.  My mom and I went to the same oncologist and we often took our treatments together.  It was a journey that I shared with my mom, and although that is not the path we would have chosen (maybe mani/pedi’s instead!?), I am so glad we had each other.  

In the coming months, I would have several more surgeries for reconstruction, and also, at the urging of my doctors, had my ovaries and fallopian tubes removed.  Part of the BRCA2 gene’s attributes is a higher rate of ovarian cancer. Since my breast cancer was diagnosed at 41, my “A team” was concerned that ovarian cancer was just around the corner.  While I mourned not being able to carry my own children, I can take comfort in knowing that by having the surgery, I extended my life so that I can be here to raise my kids and did everything possible to proactively protect myself.

Here at mynewusual.com, I have been sharing the practical things that I have learned through my experience, and I will try to share the emotional things, when I am feeling brave enough.  If sharing my story can make someone else’s journey easier down this uncertain path, no matter how hard it is for me as a very private person, then I must try.  As my mom would say, it is the “right thing to do.”

KKJ

SuperHubs, my mom and my stepdad © 2013 Group G Enterprises, LLC

 
The sad epilogue to all of this is that after seven years of fighting with everything she had, my beautiful, brilliant, spectacular mother lost her battle to breast cancer.  She never, ever gave up the idea that she would get better, and I try to remember her indomitable spirit when things seem insurmountable.  My stepdad never gave up on her either.  What a testament to love and devotion that was for all of us to see—so inspiring and so real.  I know that if this horrible disease visits me again, my husband would do the same for me. He knew what could happen going into this, and he married me anyway.  That is a stand-up guy. Having him to love me through this is surely a gift from the heavens. To love and be loved, that is all that we really want in this world. 

   

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So think about it.  If this is you, if this is your family history, consider the possibilities.  My mother fought it.  I fought it.  Millions of others fight it every day in more difficult circumstances.  So can you.  Take the first step and get tested.  Knowledge IS power! 

-AK

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Healthy me today. ©2013 Group G Enterprises, LLC, www.jaygilbert.net

 

 

17 thoughts on “My Story”

  1. Amy – this brought a tear to my eyes. Beautifully written… You have and always will be a strong woman. And now you’re an inspiration to us all. Thanks for sharing and keep up the fight beautiful sister…

  2. Amy, what a beautiful story, thanks for sharing. You need to be an official spokesperson, you can make a difference.

    Love you both.

  3. So grateful for your brave and vulerable blog. I was diagnosed in June, 2010…single mother with teenage children….girls. I am BRCA negative, but my paternal grandmother had both breast and ovarian cancer. I have no doubt that the contributing factors to my breast cancer came from both genetic and environmental influnces. My daughters will begin their mamograms at 34. Ten years younger than my diagnosis. Because of my family history, my doctors and I decided that it would be a good idea to remove my ovaries. I believe it was a good decision.

    I write my comment for one reason only…that I do not believe that BRCA is the only mutation that causes breast cancer, it is just the first one that has been found. I believe that my family has a mutation that facilitates breast cancer and I pray that additional mutations will be identified before my girls have to deal with the ordeal of cancer treatment that I have had to go through.

    For my sweet daughters and other women who have close relatives who have had breast cancer but are not BRCA positive, I hope that you stay proactive in your health. Eliminate those environmental factors that are known to increase your posiblitly of cancer. Be proactive in your examinations. For God’s sake do self exams (which saved my life).

    Blessings to you and your posts. I believe you are saving lives.

    Susan

  4. You’re a beautiful pillar of strength, just like Aunt Kathryn.
    I was clueless, but now…proud…overwhelmed…speechless-with a cheek full of tears of love and loss.

  5. Thank you for sharing your story. You are a role-model for others & an inspiration to me. Merry Christmas to you & Kevin!! Much love!

  6. Thanks for sharing your powerful and inspiring story! I’m so sorry about your mom.
    I’m also going to put it out there for others to always get an annual physical even if you feel totally fine. During mine the dr. Found a nodule in my neck and 2 mos later diagnosed with thyroid cancer. (All ok now).
    Tae care!

  7. Hi,
    I think about Kathryn all the time and miss her so much. I am glad to know you are doing well and that you are healthy. I know your mom must be so proud of you and she would be here celebrating your life if she could. You and Joe are always in my prayers. Love, Alicia

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