Looking back from my new ‘normal’ as a survivor and a BRCA2 mutation carrier, my travels have been both “absolutely horrible” and “spectacularly wonderful”. This spectrum has been important for my recovery and survivorship, embracing much honesty, hope, and humor. Even in the worst moments, interjecting humor has always helped; even morbid cancer humor that only you and other survivors can appreciate! Allowing yourself to be hopeful about the future and surrounding yourself with a health care team and others that support that is essential. And being honest about how you feel about all of it is what keeps you emotionally healthy. It is okay to be angry, sad, and anxious. These are important emotions that are healing if you acknowledge them.
How did I get here? My journey seemed to start when I was diagnosed with Stage 3c ovarian cancer in January 2012 during what I now call the “Not So Blissful Ignorance” phase. That is, pre-diagnosis, having symptoms supposedly due to aging including low back pain, sudden urinary incontinence/frequency, change in a prolapsed uterus from mild to severe, worsening pelvic pressure and abdominal pain. This was followed by the post-diagnosis “Shock and Awe” phase, for obvious reasons!
The “Shock and Awe” phase began on that January day when I woke up from pelvic floor surgery meant to repair a prolapsed uterus. Groggy from anesthesia, I saw strange people, telling me what had happened. I remember thinking – wow, that woman has very pretty eyes and that guy is kinda cute. My friend said that I heard the BIG C word, rolled my eyes, and said, “It figures.” I later learned I had Stage 3c ovarian cancer. The largest tumor was in the pelvis behind the uterus–probably hard to palpate during all those multiple pelvic exams in 2011! For optimal debulking, a portion of the sigmoid colon and upper rectum were removed, a bowel resection performed and an intraperitoneal port (IP) implanted. At three weeks post-surgery, I began six cycles of cisplatin, carboplatin, and paclitaxel IV or IP. With little family history of cancer, I was still encouraged to undergo genetic testing due to my younger age. I had a deleterious mutation in the BRCA2 gene and now had to be concerned about my risk for multiple cancers. More importantly, my daughter had a 50% chance of inheriting the same mutation, so I may have unknowingly burdened her with a life of screening, anxiety, and suffering.
As a BRCA2 carrier, I have a significantly higher risk for breast cancer and other cancers. I chose not to have a risk-reducing double mastectomy to address this risk; I have a 3D mammogram and a breast MRI yearly to screen for breast cancer.
I have been blessed to be cancer-free for seven years! I still share my body with my “anxiety demons” who normally remain caged but sometimes escape and wreak havoc with my coping skills! I retain my sanity with lots of humor and cynicism. As the comedian, Tig Notaro has said, “Tragedy + Time equals Comedy” –my motto for my future adventures. I have had very supportive family and friends and an amazing team of health care professionals that became my second family. Having physicians who were patient, compassionate and listened during our interactions was so important. One physician shared her health history as a BRCA2 mutation carrier; that was an amazing gift that helped me deal with my status and its implications.
Throughout my journey, MOCA has been an integral part of my recovery. I have participated in Survivors Teaching Students® program since the fall of 2012, sharing my story with health care students. It has been a great chance to give back and make a difference for other women through the education of health care providers. It has also been wonderful to work beside other inspiring survivors who are doing so much good for cancer patients through their involvement in MOCA. Be sure to utilize all that MOCA has to offer to help you during and after your cancer journey.
The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions.