Caroline
"I think 'Pinktober' is difficult for patients living with Stage IV breast cancer."
I was diagnosed with Stage 3 invasive breast cancer and had a mastectomy, 4 months of chemo and 7 weeks of radiation before starting on a ten year hormonal therapy plan.
A lifelong runner, my oncologist encouraged me to continue to run during treatments, telling me that it would help me on so many different levels. I was able to combine my running with my love of grassroots community activism and philanthropy, by raising funds for cancer research and by starting a Thanksgiving day charity road race.
Last August, I found out that my breast cancer had returned and that I was now living with Stage IV metastatic breast cancer. I was initially very afraid especially since I had just attended the funeral of a friend who had passed away from metastatic breast cancer in May, after a two year battle. Her initial diagnosis 9 years prior was Stage 2. My kids were afraid. We had to explain to them that I now had breast cancer in my skull, spine and hip. Not an easy concept for kids to understand. They are also old enough to understand that people die from Stage IV cancer.
I started treatment right away and am fortunate that I feel good. I acknowledged my fear but I do not let it dominate my life. I am tired from the treatments but know that I have to get out of bed each day and push forward. It is not always easy. People do not always understand what it is like to live with an incurable disease or that you can still feel tired and scared even though you do not look ill. I try to be very open about my diagnosis and my treatments with my friends and family and I occasionally update a Caringbridge website. I remain positive through my running and my volunteer work in the community.
I feel that despite my recurrence diagnosis, I had a good year. I am tolerating treatments and I ran the Boston Marathon and raised over $73,000 for Metastatic Breast Cancer Research. One of the most important things I have learned is that every cancer is different and every cancer patient is different and you should not generalize. I try to focus on the positive work that I am doing in the community and remain hopeful that there will be advances in treatments. I worry that I will not get to see my kids become responsible adults. I cherish each day and try to focus on spending quality time with them. I do not have any really special “bucket list” plans but instead I find happiness in the simple moments with my family – taking my kids to sporting events, family dinners with animated discussions, and walking my dogs.
I would like to help raise awareness about living with metastatic breast cancer and help raise funds needed for research. It is one of the least funded areas of breast cancer research. I think “Pinktober” is difficult for patients living with Stage IV breast cancer. All of the focus is on raising awareness, early detection, and survivorship. We feel left out of the movement and our voices are important. Our treatments will never end and we live each day knowing that we are dependent on advances and improvements in treatments.
My advice for those newly diagnosed is to focus on the positive. It is normal and healthy to be afraid but do not let that fear dominate your life. Find something that you love to do and keep doing it everyday if possible. Take time for yourself. Keep a journal of your thoughts and feelings and remain hopeful that better treatments with more manageable side effects will be found.
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