There are so many stories on FORCE and so many members willing to share their experiences. We hope these profiles can help you connect with our community and get advice from people like you!
The amazing outpouring of our family and friends, our church, the talented medical professionals and complete strangers!
I'm more than my risk… some fun facts about myself:
Favorite book / authors:
Favorite TV / Movies:
If you'd like to add your own story to our Voices of FORCE pages, please complete our Voices of FORCE form.
I am a daughter, sister, wife, mother of three (ages 7, 4, and 11 months), a granddaughter, niece, cousin, daughter-in-law, sister-in-law, friend, classmate, co-worker, neighbor, and most recently a BRCA2 gene mutation carrier, prophylactic bilateral mastectomy breast cancer previvor-in-progress!
My age? Well, I've been 17 twice, or almost halfway to 70. Ok, I'm 34.
I'm ready to share my story, specifically the most recent details of the past year. This hasn’t been an easy decision, as publicly sharing is a bold step into unknown territory, but this isn’t about me. My purpose is to raise awareness, uplift and empower others!
My BRCA (pronounced bracka) journey started due to unfortunate family health issues. Recently, one of my father’s uncles passed away and had breast cancer. Yes, an uncle. Around this time, one of my father’s sisters became aware of the newest BRCA research and she led the way to learn more about our cancer-stricken family history. This sparked conversations with a genetic counselor at the John Stoddard Cancer Center in Des Moines, Iowa. After sitting down with a number of my family members, including my father, the genetic counselor helped them draft a lengthy family tree. The branches included various battles with breast and ovarian cancer; the previously mentioned uncle, his mother, a sister and numerous cousins. Due to this alarming history, my father and others within his generation chose to complete the BRCA testing—one of the best decisions they ever made. My eyes are welling up as I type, so bring on the tears.
My father’s generation, which includes some of his siblings and cousins, tested positive for the gene mutation, including a sister and a cousin already in the middle of breast cancer treatments. Once the gene surfaced, it became a bittersweet token of life-altering opportunity for my family. The genetic counselor and oncologist estimated that due to our family history, those who tested positive for the BRCA2 gene mutation could face the risk of an 85% (or higher) chance of developing breast cancer, and potentially a 25% (or higher) chance for ovarian cancer. The news was devastating. While I won’t go into all the medical details, there really aren't many options. Depending on your gender, age, and chapter in life, you can start Tamoxifen right away to postpone preventative surgeries, which presents its own risks, or you begin planning surgeries, either way, cancer screenings are encouraged immediately. That’s it, there’s the short list of options.
News like this never corresponds with good timing, and the decisions presented aren’t always simple. Regardless, in fall 2014 my father and his siblings started to share the news and discuss the BRCA gene mutation with my generation of the family.
My husband and I had just welcomed our third child into the world, rather abruptly. My water broke unexpectedly at 33.5 weeks, very alarming. Our baby girl already had a difficult go at it too. Our doctor discovered cysts on her brain early in utero and we were fearful of Trisomy 18, in which babies live about one day. Previously, I gave birth to two healthy boys, but between the boys and this baby, we (like so many others) suffered a miscarriage around nine weeks along. Despite many challenges, we were hopeful throughout this rather scary fourth pregnancy, remaining optimistic and full of prayer for a healthy girl. When my water broke early, the doctors kept me on bedrest for a few days, gave me proper steroids to boost the baby's lungs, and out popped a healthy 5 lb girl at 34 weeks! Cara Ruth joined our family on October 1, 2014, without screams, but breathing on her own.
We spent seven weeks in the NICU at Blank Children's Hospital in Des Moines. A very long seven weeks, especially with two other kids at home, but we managed to teach ourselves a “new normal.” With help from our amazing parents, family and friends, we remained sane and hopeful. Cara had severe oral aversion and was very close to being released from the hospital with a temporary feeding tube. However, her two proud brothers finally got to meet her (in the flesh, not just over Skype) when she was six weeks old (a visitor age limit was lifted due to a slower flu season). We noticed major improvements with her bottle skills the very next day. Coincidence? We believe so! Cara was finally accepting a bottle routinely, but it was a very specialized formula.
While we were in the NICU, thanks to its close proximity to the cancer center, some of my extended family visited frequently. Though scary at times, our NICU experience provided an opportunity for our family to re-group before and after genetic counseling appointments, surgery consults and oncology appointments, and we supported each other along the way!
We were finally able to bring Cara home mid-November, and I continued pumping my glorious liquid gold for a few months before slowly calling it quits. To officially pack a breast pump away for the last time is a very grace-filled, love-hate feeling!
After settling in under one roof as a healthy family of five, I was ready to schedule my appointment with the genetic counselor and follow through with my own BRCA testing. Following a simple blood test and about a week of waiting, all I could think about was my family: my husband, children, parents, and sister. My one and only sister lives in Denmark with her husband. Though children of a BRCA2 gene mutation carrier have a 50% chance of also carrying the mutation, I told our genetic counselor that if one of us tested positive, I hoped it would be me. I didn’t really want to test positive. Who would? As I have been blessed with the mommy opportunity already, I prayed about it, and hoped…if one of us, let it be me. I received my results in January 2015—positive for the BRCA2 gene mutation.
Following all of the not-so-fun screens of MRIs and Mammos, we fortunately found my body to be in good health and we were initially so excited! However, during a follow up consultation with our oncologist, we learned that being in good health really meant that it was “go-time” for preventative measures. Talk about an emotional rollercoaster. I probably don't need to paint the entire picture for you, but the questions were overwhelming: What will it feel like? How will I heal? What will I look like? What will my husband see when this is all over? Will my kids notice? How about my friends, co-workers, church family; what will they think? How can I help them understand the intensity behind my choices? How will I recover with three small children who need their mom? What does this mean for their health and future? The mind race went on and on...and I cried (and cried) and prayed a lot with my husband.
We began further doctor appointments with a general surgeon (for mastectomy), a plastic surgeon (for reconstruction) and my OB-GYN (for ovarian screens and surgery planning). We had referrals from family members and others in the medical community; I truly have the A-team of doctors!
Ready, set, surgery!
My surgery plan for the year consisted of a Prophylactic Bilateral Mastectomy (PBM) on May 4, 2015 and my exchange from expanders to implants in late August. Following the successful breast surgeries, an oophorectomy (or hysterectomy) is planned for later this year. Although the risk of ovarian cancer is much lower, it is more difficult to screen. The preventative surgery options for ovarian cancer are less invasive, yet hormonally frightening and supplements are encouraged. However, the hormonal supplements can be of concern to breast cancer. It is a vicious circle, so agreeing to a plan with our doctors was encouraging.
My first surgery went amazingly well. The general surgeon and plastic surgeon work closely together with such a team approach, they did a phenomenal job. The plastic surgeon was able to start his process right away, due to my good health and the skillful work of the general surgeon. I took four weeks off from work—much needed time to heal and re-group. My husband quickly jumped into the role of Mr. Mom, he has truly been my rock through this journey. My recently retired in-laws stepped right up to help with anything I could imagine. My parents helped as much as their jobs would allow, my mom stayed with us for a week and a half, so blessed to have her! Our church offered support by providing meals for our family. My sister flew in from Copenhagen, Denmark and helped for two weeks as well. It was her first time meeting our newest baby and of course there was an immediate connection, as Cara Ruth is named after auntie Megan Ruth! The boys also loved having aunt Megan around to watch their baseball games and get into mischief with, she is such a cool auntie. More importantly, she completed her BRCA testing and was one of the first in our immediate family to test negative! Just as I’d hoped, my prayers were answered. Though she was overwhelmed with guilt, we rejoiced.
Fast forward through the summer, I healed well from the first surgery. Don’t get me wrong, the weekly expander “fills” were not fun and sometimes very painful. I maintained some feeling on my left side, so having a 6-8 inch needle poked into me every week was not my cup of tea. The procedure within the first surgery included slicing the pec muscles like a sandwich bun with the expanders placed in between. The fills were painful for a couple days, as the expanders gradually stretch the pec muscles and skin to make room for the implants. I kept reminding myself of how the pain was a manageable blessing. It wasn’t chemo or radiation and I know some amazing warriors who are overcoming that daily! I could get through this.
Joshua 1:9 I hereby command you: be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go.
Ironically, some much needed encouragement took place during this time; Cara successfully accepted a full bottle of my breast milk, around 10 months old! It was such an emotional time for me; to thaw, pour, bottle and serve my liquid gold to my baby girl, just over three months post PBM—an overwhelming, amazing, speechless, and proud moment. This was the glimmer of hope I needed to continue through this journey. And I'm sure my tears that accidentally landed in her bottle didn't alter the flavor at all. Oops!
Ok, ready, set, surgery again. August 27, 2015, I had my exchange procedure. The plastic surgeon swapped out the expanders with implants. The outpatient surgery went well, but I ended up catching a viral bug the very next day. What a setback; fever, migraine plus uncontrollable chills equaled a trip to urgent care which landed us in the ER. Thankfully, IV meds helped get my body back on track and I took a week off from work to recover. And once again, with the help of family and friends, this is now just a memory and we move forward!
Perspective has been so important throughout my experience. I acknowledge how grateful I am to have this proactive opportunity. I commend anyone who is battling any medical situation right now; and to those of you fighting cancer alongside your medical battle, please know that you are a courageous warrior. You got this! Stay strong! You are a true inspiration!
So, the current chapter of my journey reads: a small town, Iowa raised farm girl, who is choosing to share her story to empower others. Why hold this inside any longer? There are other journeys to be had and other lives to be saved. By sharing my story and increasing BRCA awareness, I hope to help someone else in a similar situation today or in the unknown future.
Do you have a family member or friend with breast or ovarian cancer? Did it seem to run in the family? Do they know if their cancer was hereditary? Have they talked to anyone about the BRCA gene mutation? This information can be invaluable in helping doctors plan current and future care for them (male or female) and their families. Please take the time to learn and share this with your loved ones. YOU are now the empowered one; YOU could save a life, possibly your own.
Some life experiences may feel like the highest point of the ferris wheel, you know that moment when it stops to let people out below and you are stuck at the top. It's beautiful and breathtaking, the crisp air feels clean and the breeze seems nourishing! While other experiences trigger the darkest lows and the scariest times of unknown. Life will always be filled with ups and downs, and we recognize that we will encounter other trials.
It’s important to know that you are not alone; by finding support in a commonplace, an unfortunate situation can become a fortunate blessing. With my strong faith, and amazing family and friends, I am proud to share that I am a previvor-in-progress, a survivor of a predisposition cancer, and I am forever changed. As they sing in the Broadway musical Wicked, "because I knew you, I have been changed for good!"
So, go on, share and empower, for good.
Much love, from my family to yours,
There are low points, times of pain or discomfort that lead you to question your choices, but you have to believe the next day truly is the first day of your life!