When I give the short version of my story, there are invariably a lot of questions. So let's take it back - in fact, way back, for just a second.
My father's Jewish lineage immigrated to New York from Europe with the last name of Rothstein. That name was changed in the 1940s when my father was young to what people now know as my maiden name, Russell. Both of my father's parents, my own grandfather and grandmother, ended up with breast cancer and dying from it. When they passed away in the early 1980s, there were really only two options for treating their breast cancer: disfiguring surgery or aggressive and toxic chemotherapy.
Fast forward to myself, a new RN in my mid-20s, taking care of myself by going to all of my recommended appointments and check ups, and exercising regularly. Based on my family history, my gynecologist ordered a mammogram and genetic testing for the BRCA gene mutation (commonly known as the breast cancer gene). My insurance denied both. To make matters worse, I wasn't sure if I was angry or relieved, as the insurance company had made it clear that if I receieved genetic testing and it came back with a gene mutation, I could be denied future coverage due to what could be considered a "pre-existing condition."
Several years later, I was now married and covered by my husband's insurance. Huge changes had been made at the federal level in regards to medical coverage; things were different now. I was at my regular yearly check up, everything perfectly normal, when I thought I would try again to see if I could get a mammogram covered. My nurse practitioner happily agreed that it would be a good idea and ordered one. Thankfully, no problems this time and the appointment was made.
Two weeks after our one year anniversary, my husband went with me to my mammogram appointment. I had no lumps, felt perfectly normal and fine, and had absolutely no reason to worry. This was just precautionary to get a baseline. The imaging place started out with ultrasounds of both breasts and didn't find any abnormalities. Then I had my mammogram, and instead of having me change back into my clothes, they told me to wait. The radiologist came in and talked to my husband and I; he saw something suspicious that needed a biopsy. He looked very serious. "We have tickets to fly to Japan next week. We're supposed to be gone for 3 months overseas... can this wait?" I asked. He said it would be a bad idea and that he thought this could be something malignant.
The biopsy couldn't be done via the normal methods because this suspicious mass wasn't visible on ultrasound, so an MRI-guided biopsy was ordered. It was promptly denied by the insurance company. One of the surgeons I worked with overheard of my dilemma, took me on as a patient the following day, and "did what needed to be done" to get the insurance company to comply with the biopsy order.
There were almost daily appointments with different doctors and things went quickly. The biopsy was done, the results came back 3 days later, and there it was: I had breast cancer. I was 32 years old. I had just been married for a year. It was my first mammogram. I didn't have a lump. I had to cancel our trip to Japan. I didn't feel like I had cancer.
A week later I was in the operating room of the hospital that I worked at, with two surgeons and an anesthesiologist working on me whom I normally work alongside every day. Bilateral mastectomy with sentinel lymph node biopsy. In the meantime, I had the genetic testing done and had to wait over a month for the results. When the genetics came back, they revealed that I did in fact have a mutation common among the Ashkenazi Jewish population. This meant that I was at a huge risk for having ovarian cancer in the future.
A year and a partial hysterectomy later, I was going through all of my paperwork from all of my medical appointments. I came across a pamphlet about Sharsheret and decided to give them a call. I told them that I had just had an overwhelming year, was overcome with all sorts of emotions, and didn't know where to start. They asked me a few questions about myself and linked me up with an amazing peer supporter who had a similar background and pathway as myself. She listened, talked me through it, let me cry, gave comforting words, and gave helpful information. After the experience, I immediately let Sharsheret know that I was interested in becoming a peer supporter for others.
Now here I am, being offered the chance to represent Sharsheret in the NYC marathon!! I've never run that far, but I think about the friends I've made through this cancer experience... many of whom are close to my age, have been through surgeries, chemo, radiation, complications, infections, some getting good news, others being told they're terminal... and I realize how important this is. It's important for me to be healthy so I can do something for these friends, and the friends I have yet to make.
Sharsheret is an amazing organization that helped me, and they help people of all backgrounds and faiths, through this confusing and emotional experience. They are so good that they received the highest rating from Charity Navigator. Don't believe me? Look for yourself!
Donations to this fundraiser will not be going toward paying for my trip (my husband and I are using airline credit for this trip). Instead, they go to help fund Sharsheret's program to raise vital health, breast cancer, and ovarian cancer awareness, support, genetic counseling, and more for Sharsheret’s national programs. Sharsheret supports young women and families facing cancer at every stage—before, during, and after diagnosis. We help women and families connect to our community in the way that feels most comfortable, taking into consideration their stage of life, diagnosis, or treatment. We also provide educational resources, offer specialized support to those facing high risk of developing cancer, and create programs for women and families to improve their quality of life. We understand that young women have unique concerns when it comes to breast and ovarian cancer. All donations are tax-deductible.
For more information on Sharsheret visit www.sharsheret.org