Her skin was dandelion yellow and her stomach is swollen giving the appearance of pregnancy. She breathes with the assistance of an oxygen mask, as machines beep behind the head of her hospital bed. The nurse injects her with sedation and she suddenly becomes still. I search her face, etching every crease and wrinkle in my memory. I want every second to last a minute; every minute to last an hour; and every hour to last a lifetime. I know that the sands of time are slipping away. This was the last vision I had of my Mother as she succumb to her battle with breast cancer.
Today's news that Angelina Jolie had decided to have double mastectomies after testing positive for the breast cancer gene, is the reason behind this blog. In 2001, I too made the decision to be tested for the breast cancer gene. In 1996, my first cousin, Cheryl, had pioneered the decision to pursue testing after being approached by her physician. Our family, has a very strong history of breast and ovarian cancer. Our maternal grandmother had breast cancer, Cheryl's Mom had breast cancer, our Aunt had ovarian cancer, and my Mother had breast cancer. In addition, there were several other family members who had other forms of cancer-melanoma, lymphoma, and cervical just to name a few. Her physician considered the prominence of this disease in our family good cause to seek testing. Cheryl, aware that this was at the beginning stages of this type of testing, began a four year process of researching the genetic screening. Through the advice of a genetic counselor and after reviewing numerous articles and literature on the testing, Cheryl had her blood drawn to determine if she had one of the two mutations associated with breast cancer. Regrettably, she was positive for the BRCA-2 mutation.
Let me try to explain what this means. In normal cells, BRCA1 and BRCA2 help ensure the stability of the cell's genetic material (DNA) and help prevent uncontrolled cell growth. A woman's lifetime risk of developing breast and/or ovarian cancer is greatly increased if she inherits a harmful mutation in BRCA1 or BRCA2 and that risk is increased if that woman has multiple, close family members who have been diagnosed with these diseases. A mutation in the BRCA1 may also increase a woman's risk of developing cervical, uterine, pancreatic and colon cancer. Mutations in BRCA2 may additionally increase the risk of pancreatic, stomach, gallbladder and bile duct cancer and melanoma. While the risks are greatly increased there is still the possibility that a woman with either mutation will never develop one of these cancers.
After receiving her positive result, Cheryl shared the information with the rest of the family, offering them the opportunity to choose whether or not to be tested. For myself, I knew immediately that I wanted to be tested. I didn't care about the stigma that may be attached to a positive result, I simply wanted to know. Cheryl had eloquently said about her decision to be tested, that "knowledge is power" and that became our family motto. I, along with my husband and three children had watched my mother suffer through chemotherapy and then ultimately a horrific and painful death from breast cancer. If I could spare them that heartache again, I would do what I needed to do.
In April, 2001, my husband and I sat with a genetic counselor at the University of Maryland and discussed the testing process, the implications of a positive result, and our overall feelings regarding the potential of a positive or negative result. My blood was drawn and we began the six week wait for the results. In my heart of hearts, I was certain that I was positive and I had convinced myself that I would be okay with that. I couldn't have been more wrong. As I sat in front of the counselor, who by this point had become personally connected to our family, my heart raced as she opened the result envelope. Suddenly, I felt a kick in the gut as with tears in her eyes, she read "positive for BRCA2". I turned and looked at my husband, and all resolve dissipated as reality struck. My mother once described her cancer as being like the game pac-man. She said she would close her eyes and envision these pac-man characters just eating away at her. Suddenly I understood what she meant. While I hadn't been told I had cancer, I felt as though those pac-men were just waiting to starting feeding. The fear was very real.
The next several weeks were spent conferring with my physicians discussing what my options were. I could choose to be monitored closely with mammography and physical breast exams. I could opt for Chemoprevention therapy, taking a synthetic drug to reduce the risk of developing cancer or I could elect to have prophylactic (preventative) surgeries such as mastectomies and/or oophorectomy (removal of the ovaries). For me and my family, the only decision I could make was the prophylactic surgeries. So, in September of 2001, I had a double mastectomy and the reconstruction process was begun. Three months later, in December, I had my ovaries removed. The surgeries were painful and recovery was long, yet I was somewhat relieved to know that I had diminished my chances for developing breast and ovarian cancer greatly.
The reminder of this gene is visible everyday as I dress each morning. The scarring from the surgeries is extensive and the physical effects from having my ovaries removed are on going. The fear isn't completely gone because there is always the chance that I could develop one of the other forms of cancer associated with this gene, but knowledge is power and because of this knowledge I am screened earlier for the other possibilities.
I was prompted to post this blog after reading various comments posted to articles related to Angelina Jolie's decision. Many called her a coward saying that real heroics would be in facing down cancer. Others stated that genetic testing was fraudulent, a scare tactic to make money and some said that this was only available because of her status as a Hollywood actress and wealth. These comments both saddened me and infuriated me. After my decision to have the preventive surgeries, I had a very hard time accepting when people would say that it was very courageous of me to do this. I looked at it as being cowardly, then my husband reminded me that my willingness to suffer through the effects of the surgeries to "get cancer before cancer got me" and spare my family was not only courageous but selfless. He further reminded me that taking a proactive approach to this was no different than someone having yearly physicals to prevent future health issues or dental cleanings to prevent losing your teeth. It may seem rather elementary when put in those terms but is true non-the-less. I'm sure if given the opportunity to choose between facing down cancer or being proactive, my mother would've chosen to be proactive. As for the "status" remarks, I can only reply by saying, I am not a Hollywood actress and I am not wealthy. I am a middle class wife, mother and grandmother.
The decision to be tested or not is personal and an individual decision. We have had family members who have been tested and some who have opted not to. For the ones who tested positive, some have had surgery and some have chosen other proactive measures. Regardless of their decisions, they were personal and whole heartedly supported by everyone who loves them.
To those who may have opinions about the decision to be tested and be proactive, I ask, "Please don't judge this very personal decision. You don't know how you would react if you were in this situation." The availability of this testing is just one more step in the continuous battle to find a cure of this ravenous disease and I for one am thankful that I had this option. Regretfully, my Mom did not.
To all those, who are battling this disease, my prayers are with you as fight to defeat it. To those who are facing the decision to be tested or are awaiting results, be strong and know that there are many who support you. And finally to those who have tested positive and chosen the path taken by myself, my cousin and Angelina Jolie, remain confident in your decision, because it is yours and yours alone.
Until next time, I have the Knowledge and in that Knowledge is Power.
God Bless,
Cat
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