Parenting Solo with BRCA1 by Mel Tibbetts

My mother died from breast cancer at the age of 37; I was 18 years old when she died.  She fought for 2 years.  My maternal grandmother was in her 60’s when she was diagnosed with breast cancer.  She was one of the lucky ones.  She lived a full life until the age of 82.  Me, well, I always had a feeling that breast cancer would find me too, and then it did, but not in the way you may think.  

My husband and I got married when I was 31 years old.  We had 2 children within 4 years of marriage.  In August 2013, my husband was diagnosed with stage 4 colon cancer; the cancer had spread to his liver.  He was 41 years old.  I knew right at that moment that he did not have long to live and that he was dying.  I had lived through cancer before as a teenager and I had seen how it destroyed my mother.  I knew that it would ravage my husband too.  

My husband wanted to have genetic testing done because of his diagnosis of advanced cancer at such an early age.  He wanted to ensure that our children would have all of the medical information that they needed to prevent cancer from “getting” them after he died. He met with a Dana Farber genetic counselor on November 13, 2013.  His results came back on December 13, 2013. They told me, “He has no genetic mutations. We do not know why or how he has cancer.”  My first thoughts were, “Phew.  What a relief.”  I shared this information with him and he was elated that he would not be leaving a genetic scar on our children when he died.  He then turned to me and said, “What about you?  Will you do the genetic testing for the kids?”  He was right.  I needed to do this for them just as much as he did.  

While my husband was hospitalized for the umpteenth time, I met with a Dana Farber genetic counselor on February 12, 2014.  My husband never heard the results of my testing and I am so thankful for that.  I wanted him to leave this world with peace.  He died on February 23, 2014.  My children were 5 years old and 7 years old at this time.  

On March 10, 2014 I met with the Dana Farber genetic counselor to discuss my genetic results.  At that time I was informed that I have an altered BRCA1 gene.  This mutation is associated with high cancer risk for hereditary breast cancer and ovarian cancer and should be clinically regarded.  A woman with an altered BRCA1 gene has 50-85% lifetime chance of developing breast cancer and a 20-40% chance of developing ovarian cancer.  My world crumbled even more in the midst of my grief.  I felt defeated.  My first thought was my children, “Why them?”  We had just lived through cancer taking someone that we could not live without.  I wondered how I was going to fight this.  How was I going to parent my two children solo while the only thing I could think at this time is, “I am going to die next.  Cancer is finding me too and it will kill me.  My kids will have no one left.”  I do not pray often, but I prayed hard that night.  I prayed that my angels would look over me and my children and guide me through this new journey of solo parenting with cancer still looming over me.  I prayed for guidance and  I prayed for strength.  

At that moment, I decided that cancer could not win in my life anymore.  I made some medical decisions to reduce my risk of getting breast and ovarian cancer and I have followed through on these decisions.  I get screened for breast cancer every 6 months with mammograms and MRIs.  I have a wonderful breast cancer specialist that I meet twice a year who has helped guide me in this journey.  I can honestly say that I feel empowered over this BRCA1 mutation now.  I have control over it, it does not have control over me.  I will win because my children need me to win. My children cannot lose another parent to cancer.  I will do all that is humanly possible to ensure that.  

Down the road, I will need to share this information with my children as they, too, will need to make decisions about genetic testing.  I dread this day.  It will almost be like telling them all over again, “Daddy died.  I am so sorry.”  I continue to pray that neither of my children have been passed this genetic mutation.  I pray that if this is the case, there will be bigger medical advances in the world of breast cancer and all cancers so that cancer will not feel like the monster it has become for them.

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