On the set of HIGH RISK: A Rethink Breast Cancer Documentary. I (Kelly) am in the middle with Carla to the right and Erika to the left.

My sister Carla was diagnosed with stage III triple negative invasive ductal carcinoma at age 40, in October 2013. With a very minimal risk of breast cancer in our immediate families (our maternal grandmother was diagnosed conservatively at age 80), we were shocked and devastated.

Carla, always realistic and cloaked in positivity, was seemingly ready to tackle it head on. And did she ever! She approached every surgery, chemotherapy treatment, radiation session, reconstruction visit and follow-up appointment with a smile on her face. She never complained, got angry, or felt sorry for herself. All she wanted was to complete treatment and return to her “normal” life. And she did. This month on May 4th after a long 18 month whirlwind of medical activity and completed treatments, she returned to work. I have never been more proud of anyone in my life. I may be biased, but she is truly a remarkable human being.

Because of Carla’s age and the nature of her cancer, she was offered genetic testing. When she accepted and her results came back positive for the BRCA1 gene mutation (which led to her taking prophylactic measures to ensure the gene mutation wouldn’t get the best of her), the testing was extended to my mom, my sister Erika and myself. After researching the implications of a positive result and potential treatment options, we were all certain we wanted to proceed with the genetic testing. Our family has always been close. The most trivial of things can bring us together. Now we were faced with something that could alter our lives and the lives of our children forever. We were prepared for that, as long as we were together.

Results day in June 2014 was, well, strange. It felt real in that it was happening – I recall the stillness in the room as we waited for our lovely genetics counsellor to speak — but surreal because the scope of it all after she delivered the news was really difficult to comprehend in that moment.

All three of us were BRCA1+.

Erika cried because she knew her young family was not yet complete and was overcome by the ethics of it all. Mom cried because she believed she was responsible for passing on the gene mutation to her girls, and I nervously laughed a bit at the shock of it all. None of us truly knew what to say. What we did know however, without saying a word, was that we were going to be okay because we were together.

The following day our journeys from results to awareness and proactivity began. Today, Erika continues to wait for prophylactic treatment as she contemplates family choices. I had my ovaries/fallopian tubes removed in January 2015. At the end of March I underwent bilateral mastectomies with immediate reconstruction and continue to recover.

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Ready – Set – Action!

I feel relieved. Secure in the fact that I have done everything in my power to stop this gene mutation in its tracks. Mom was all set as well.  Her first surgery (removal of ovaries/fallopian tubes) was scheduled for January 2015, on the same day as mine. Then it came.  She was diagnosed with breast cancer in November 2014, 4 months after we received our genetic testing results. However, because we were aware of the BRCA1 gene mutation and were therefore being monitored closely, it was identified by mammogram early and had not yet spread beyond the tumour’s walls. I have never been more grateful for anything in my life.  This emphatically supports the role of genetic testing and its impact on life.  My Mom’s life.  She continues through treatment with the same vigor and positive attitude as Carla. I love how feisty and strong she is.

The fallout…

Last night, it started. Throbbing pain in my hips radiating down to my knees. Today, I am finding it difficult to mobilize. I am 6 weeks post prophylactic bilateral mastectomies with reconstruction.  It can’t be related. Then for a fleeting moment, it surfaces. I am BRCA1 +. I recall the BRCA1+ cancer statistics in my head: 80% breast; 40% ovarian; pancreatic cancer, colon cancer. Nope, it’s not there – I don’t recall bone cancer at all. So I breathe deeply and chalk it up to possible over-activity the day before.

But then, I didn’t really do much. I am convalescing. I am being very careful because I don’t want to jeopardize my beautiful new breasts. So, I suppose this is how it’s going to be. Every ache, pain and action second guessed, considered, worried about. Is it my pesky gene mutation at play, or did I bend too quickly?

This is it. This is high risk living. It is forever and can’t be pushed aside.

I am then choked by guilt. I don’t have a breast cancer diagnosis. I was lucky. I got to choose my battles. To be proactive. Mom and Carla didn’t. They were forced to react. The BRCA1 gene mutation AND obscurity of recurrence now wrap around them tightly like a fuzzy fleece blanket in the dead of winter.  Always there, always reminding.  Just enough to send a stomach into a churning frenzy with a headache that lasts a little too long. Or an episode of chest pain that feels just a little bit different than before. Constantly trying to rationalize, yet afraid of the unknown.  It isn’t fair.

So I will swallow my guilt and rejoice in the power of knowledge. The power of medicine. I am grateful that I have been afforded the opportunity to somewhat control my destiny. To know that when the time is right, my 3 beautiful children will also be presented with the gift of genetic knowledge. To understand that I will always need to be more diligent where my health is concerned.  To know that I now have the best chance to be a daughter, a sister, a wife and a mother that much longer. Although my life will always be high risk, it is still a life worth living well.

-Kelly Scheifele

22 COMMENTS

  1. I have known this family of three sisters and their Mom and Dad from the time the girls were in elementary school. I have been aghast at the health issues the entire family have delt with. The love and support that they all have for each other is absolutely something to behold. Love and closeness of family is the most beautiful gift they could give each other.

    • Thank you for the lovely comments and support Barb. We are all very appreciative and couldn’t agree with you more!

  2. Your ability to put our family’s reality to words is beyond strength.

    I’m sure that anyone who takes the time to read you words will take comfort in knowing that the fight against Cancer can be waged and won.

    Love Dad

    :To those of you who read Kelly’s words and know of someone who might have or get Cancer,please let them know that are family will be available to talk with them at anytime and tell them not to be afraid.

  3. Beautiful courageous words Kelly.

    Your struggle has given Mom the extra strength to
    face her battle with “C” head on. We are proud to
    have you as our Daughter-in-law.

    Love Mom & Dad Scheifele

  4. I read your interesting story. I am sorry that you and your loved ones have to go through this but I also see that God has given you the medical people to help and the physical and spiritual strength to face the cancer and say: “You will not win!” May God bless all of you richly.

    • Thank you so much Pastor. Even though you have so much going on in your own life, you always make the time to pray for us and to let us know you care. We are very grateful for that!

  5. Kelly – you are an inspiration to any who read your blog. “Falling down is a part of life; getting back up is living”. Your family have all become stronger people, throughout this storm. I am proud to know such a courageous young woman. I think of you often.

  6. Kelly you are one outstanding young lady as are your sisters. Our thoughts and prayers go out to you, Carla, Erika and your mom. We are very proud of all of you as you fight the battle and are winning. We think of all of you often. Love Us.

  7. Kelly, I am so proud of you,Carla and Erika.
    You did a fantastic job of telling your story.
    Love you all,
    Aunt Lorraine

  8. Kelly, you did a terrific job of telling your amazing story
    We are very proud of you, Carla, Erika and your Mom.
    You all are always in our thoughts and prayers.

    Lots of love xo

  9. Kelly, this is beautiful! I just thought of you today at work when I saw Carla and wondered why I hadn’t seen you. Bless you!

  10. Thank you for allowing the rest of us to see the struggles you and your family are facing. You are a remarkable woman and the message you share is profound. I’m so sorry that this evil disease has invaded your life. It is our prayer that the Lord will give you the courage and faith to keep fighting it.

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