I was excited about beginning my second year at the University of South Carolina and for the first time having my very own apartment. I was in the midst of my sorority’s fall rush which we had been planning and practicing all summer long when I received a devastating phone call from my mom that she had breast cancer. Shortly after my mom’s diagnosis I decided to leave the university and come home to be by my mother’s side. I knew that she needed me more now than she ever will. I didn’t think twice about putting my education on hold and having to say goodbye to my dearest friends. With the news of my mom having stage 4 breast cancer and not knowing if or when it was going to take her life left me with a flood of gut wrenching feelings that I hope to never experience again.
Emotional support was the one thing that was going to give me enough strength to deal with my own stuff about her cancer so that I could be there for my mom 100%. So I knew going home where my boyfriend of 3 years lived would surely be the rock that I so desperately needed right away. He was the one thought that kept me smiling and moving forward with each day while I was packing my life up in South Carolina. Between my sporadic spells of weeping I would get an overwhelming feeling of warm hearted excitement and anticipation from finally being able to be with my boyfriend after all these years of long distance phone calls and short holiday visits with one another.
Life didn’t pan out the way I had anticipated because when I got home my boyfriend had other plans for his life and I was not included in them. The love of my life, that rock that I so desperately needed was no longer an option to turn to. I was left emotionally raw in Raleigh which didn’t feel like my sweet cozy hometown that I once new. I had to be super Carlye if I was going to make it through this stage in my life. I mourned the loss of my relationship while managing to show up for a full time job and all the while wearing a happy face during my mom’s chemotherapy visits and all 10 of her surgeries. These challenges were slammed in my face simultaneously and there was nothing I could do about either one. Through this deep pain I chose to take that emotionally draining year of supporting my mom to a full recovery as a time to clarify what really mattered in my life.
I often questioned how I was showing up in the world and why my life had become so dark. I was on a mission to figure out who I really was being in the world and how to push beyond all the pain to move into what was next.
I will be forever grateful for my biology lab partner from the University of South Carolina. He showed up big time for me even after I left him there at school. He couldn’t be by my side but he was there for me every minute of the day taking my phone calls no matter what class or test he was in the middle of. He sent flowers and plants to my mom, cards, and most of all he was a genuine spirit that gave to me and my family unconditionally. He dealt with my severe emotional ups and downs and helped me check in with myself. He kept me grounded even when my life seemed to be falling into a million little pieces.
I didn’t have control over the circumstances that arose in my life, but the way I chose to handle them made all the difference. What I’ve really learned from our experience is that it wasn’t about cancer at all; it was about life, the quality of my relationships and understanding just how precious each moment is. The past two years we spent more time with our family than ever before and it felt so good. We came together to support each other, but the bottom line—as Daddy likes to say—we were scared we were going to lose mom. With our time being limited on this earth, we must not wait until there is an illness to reconnect with family and loved ones.
When my dad was 21, his mom, Edith From, died of breast cancer. When my mom was 19, her mom, Charlotte Moskow, died of ovarian cancer. At 23, my mom is now a survivor of breast cancer.
Currently, I am a senior at Meredith College. I am a communication major with a concentration in mass media hoping to become an event planner. This summer I have been volunteering with the Cape Fear Habitat for Humanity in Wilmington, North Carolina and been a nanny for a precious 9 month old baby girl. My life may sound typical for a 23 year old but in 2005 I tested positive for the Breast Cancer Gene Mutation—BRCA1.
After mom’s diagnosis of breast cancer and upon her first arrival at UNC, the genetics department was 2nd in line to see mom, 1st being her oncological surgeon. A team of five geneticists were literally standing outside of mom’s exam room. Based on mom’s heritage of being a Jew of Ashkenazi (eastern European) descent and had a mother that passed away with ovarian cancer at the age of 40—it was a “no brainer” for the genetics team to test mom for the BRCA gene but this was a totally new concept for us.
As a family we decided that my sister and I would wait to be tested until mom completed her chemotherapy—one more stress that we didn’t need to add to our plates at that time. By the way, mom had numerous surgeries and 8 grueling rounds of chemo and tested positive for the BRCA gene.
So our geneticist Dr. Jim Evans, genetic counselor Lisa Sesswein, and social worker Pam Durham suggested that our family come in to discuss testing and the implications for my sister and me. They held our hands and they held our hearts through our experience of being tested—Courtney and I are both positive for BRCA1.
The genetic test itself was quite simple yet emotionally complex. The test was merely a sample of my blood that was shipped off to Myriad Lab in Salt Lake City, Utah. The hard part was the two months of waiting and waiting and waiting. Going to bed unsure of what my life would hold. Questions such as, would I be positive and not my sister and vice versa, will I be part of the statistic of women who have the mutation and get cancer, if I am positive will I too pass it on to my children.
The next big issue for me was how being positive for BRCA1 was going to affect relationships in my life and my future. At age 21 I was dating and wasn’t sure if I needed to tell my dates that I could potentially develop cancer. I bring this up because as young women we needed more mental and emotional support from professionals. UNC offered us a social worker that we met with as a family and the session was great….but it was only one session. During this process we went over what to expect in the future for physical testing with the mammograms and MRIs but we never got enough psychiatric support. We were told that we have an 86% chance of developing breast cancer. How is anyone supposed to handle this? There is a great need for mental and emotional support along with genetic testing.
I feel blessed that my family has access to UNC which is one of the top breast cancer research centers in the country and it so close to home. So every six months my sister and I have clinical breast exams and every year we have mammograms, ultrasounds and breast MRI’s. We are taking full advantage of the medical technology that is available to us today—because we love life, our family, our friends and the dreams of our futures and because we know that we have a lot left to do here.
This entire experience has had a huge impact on my life. Not only have I had to make life altering decisions but this has allowed me the privilege of helping others. One of my new life goals is to educate and inform about the importance of genetic testing and how to live life with this knowledge. Many people are not aware that they fit the criteria for genetic testing or how to even begin; all they know is that family members have experienced cancer.
In order to fulfill my new life goal, my mother, sister and I have created The Gene Girls. We are committed to sharing our mission of being a voice of hope and enlightenment to the community, of raising awareness of genetic links to cancer, and of how to live an extraordinary life no matter what.
To date The Gene Girls have been featured in Newsweek, NBC national news, we were the key note speakers at the North Carolina Lineberger Cancer Center and guest speakers for The American Cancer Society. We’ve also been interviewed by the Associated Press, and other various news publications.
The bottom line why I am committed to being a Gene Girl and raising awareness is if there is such a thing as divine purpose…..this is ours. My grandmothers were not given the option of genetic testing and they left this earth a long time ago—actually my mama is the first in three generations that has not died of cancer before their first child’s wedding.
Genetic testing is an idea whose time has come and from my heart to yours it is our responsibility to at least give everyone the opportunity to know that genetic testing is available…this is truly a new beginning.
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Written by Carlye