Guest Post: I Wish These Genes Didn’t Fit

This is a first for me: A guest post. It is a piece my sister, Kristen, wrote about something important happening to her. I offered my blog as an outlet because her message is an important one. Kristen has always been a close confidant; a source of light and laughter for me. Thanks, Kristen. And thank you for reading!

I Wish These Genes Didn’t Fit, By: Kristen Trainer Dion

When I was pregnant with my youngest child, Willa, my mom was diagnosed with breast cancer. Looking back, it terrified me, but it didn’t come as a shock. “Here it is, again!” I thought. “The black cloud that followed her for most of her life.” Her mom and grandmom both died of the disease after fighting with everything they had. My grandmom had both of her breast removed in what they called a radical mastectomy. Still, she succumbed to cancer.

Now, I worried that my unborn baby would never know her grandmom. No Grammy sleepovers, or trips to The Dollar Store, or McDonald’s or to the movies. My other two children were so young, I worried that they wouldn’t know her like I never really got to know my grandmom.

I am so grateful that was not the end to this story, but the beginning of my own personal journey. When my mom’s health returned after chemo, her doctor urged her to get genetic testing  because of her strong family history, and the fact that she was not only a breast cancer survivor but she had also survived STAGE 3 Ovarian Cancer! #miracle #sheismeantobehere! Lol.

My mom found out she did in fact carry the BRCA gene, a gene that increases a woman’s risk of getting ovarian cancer up to 50% and breast cancer up to 80%. She urged me, well actually begged me, to get the testing done. I blew her off for a good while and then finally gave in just so she would stop talking about it.

I am so thankful she never did stop talking! You see, I am a carrier of the BRCA gene as well.

When I found out I had tested positive for the gene, I remember just breaking down. I was heartbroken and consumed with worry. I immediately thought of my daughters. What about their breasts? Will they be more at risk for getting breast cancer?  Will my son pass this along to his children? These thoughts were unbearable.

I know all too well the devastation of cancer and chemo. I have seen my mom’s beautiful bald head more times than I would have liked. I have witnessed her being so sick that she could not move or do anything at all. I have seen her body after she had both her breasts removed.

And yet, I have also witnessed pure strength and what the human spirit will do to survive! Like so many incredible, strong woman out there, my mom fought her way back to health–fought her way back from cancer–twice!!

About a week after finding out I had the gene, I started to realize the magnitude of having this information. I started to feel so blessed, so incredibly lucky.  I am grateful we live in a time where I have the opportunity to find out if I am destined to get this horrible illness. I believe with all my heart that if you are a woman with the BRCA gene in my family, you will get ovarian or breast cancer.  At the urging of my doctor, two weeks after my 40th birthday, I had my ovaries removed. I was to follow that up with an MRI, then 6 months later, a yearly mammogram. Sounded like a good plan!

Only, I am a mom of 3 and life gets in the way. What should have been an MRI in January turned into an MRI in November. Then, when I was at Fox Chase Cancer Center, the doctor found a lump in my left breast, and another under my left arm. I was overcome with fear.  Luckily, I only had to wait until later that day before they got me in for an ultrasound and all was fine. But in that time I waited, I thought of all the women who had a lump that was cancerous. Of the women who fought with all of their might to survive this disease. I thought of the families out there that had to watch someone they love suffer. I was so scared. I didn’t think I could be that strong.

I think my husband, Todd, was more scared than I. We talked that night, and he told me how he thought the odds were stacked against me. He told me he really wanted me to consider getting my breasts removed — that our family would be nothing without me, and he could not bear to watch me suffer. I am so blessed that he is my best friend! After a lot of conversations like that, I decided that I don’t want this dark cloud hanging over my head for the rest of my life. I don’t want to worry in between MRIs and mammograms that one day I will go in and everything won’t be fine. I don’t want to follow the same destiny as my mom, and my grandmom, and my great grandmom…. In my heart, I knew what I had to do.

And so, this Wednesday, March 18th, I will be getting a double mastectomy with reconstruction.  I know this may not be the right decision for everyone, but it is the right decision for me and my family. I don’t feel that this will in any way diminish my femininity, but empower me as a woman. It is so profound that I can take control.  Control of my health and future, and with this information I can make sure my children and future generations can do the same. As a mom, that is such an incredible gift!

Because of genetic testing, we have a fighting chance against ovarian and breast cancer. And for that I am deeply grateful! This is my story, my chance to rewrite my family’s genetic history. My dream is that my daughters will not have to make this decision because there will be a cure for breast cancer. My hope is that women continue to get genetic testing, so they won’t have to endure this horrible disease. My heart is with all the families that have had to watch someone they love suffer. My prayers are for the women who continue to fight with all their might. I pray for their healing; that they may  live a long and blessed life! My thoughts will always be with the beautiful women who have been taken from us in their brave battle against ovarian and breast cancer.

My mother and grandmother

My mother and grandmother

IMG_2923

Mom and me

dion family

My family

 

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7 comments

  1. What a great story!!! Mike, your sister is so brave and she is giving a wonderful gift to her family! What an amazing act of love.

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  2. Kristin-Thoughts and Prayers will be with you tomorrow as you begin the first day of the rest of your life! You are Brave and Courageous and you are at a world renown Hospital. You are absolutely right when you say you are blessed to have the knowledge to change the course of your future ! You Go Girl! Thoughts & Prayers! You got this!

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  3. Best of luck Kristen for a speedy recovery. You’ve got a great support system around you that extends far beyond your family. With someone like you Mom leading the way I’m sure you will pull through just fine. You’ll be in our thoughts.

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  4. Please tell your guest writer (aka my BFF) that I thought her essay was excellent – so brave and heartfelt. I hope that her surgery went well and that she has a quick recovery. My thoughts are with her and her family. MP Date: Wed, 18 Mar 2015 01:18:47 +0000 To: mpaparone@msn.com

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