by Kim Coy, President, Ta Ta Rebels Inc. – Survivors Raise Hope
With National Cancer Survivor Day right around the corner (June 3rd), I would like to share with you a story of Breast Cancer Survivorship. This story starts in May of 2012, when during my annual mammogram there was a lump in my right breast that needed biopsied. The biopsy was within 2 days and the diagnosis the next day. It was Stage 1 Breast Cancer. I really do not remember much of the conversation after hearing those words. The whirlwind of doctor appointments began with the surgeon, and the oncologist. Treatment would consist of surgery and radiation. I had lymph nodes removed as well as the partial mastectomy. I endured 35 daily (7 weeks) radiation treatments and three days of boost radiation treatment. The boost radiation caused second-degree burns and left permanent scarring. Due to the removal of the nymph nodes, I have Lymphedema in my right arm and wear a compression sleeve.
I have spent the last 5 years going to numerous appointments, and adjusting to my new normal life, dealing with all the side effects of my treatments, and raising my teenage children (we lost their father unexpectedly a year before my diagnosis).
Three years ago, the financial burden of surviving Breast Cancer became overwhelming. My husband and friends held a fundraiser that included a motorcycle ride to a destination that held the event. There were fantastic local businesses that donated to the raffles and door prizes and they raised enough money to pay off some of the medical bills. I was also able to get my compression sleeves, and custom bras. It was during the preparation of this event that I became acutely aware that I was not alone and there are very limited resources for assistance. Therefore, the following year my husband and I decided to have another event and assist others like myself. It was then that we realized that donations were limited because we were not a 501c (3) registered nonprofit. With the assistance and support of great friends, my husband and I were able to form a 501c (3) Nonprofit for Breast Cancer Survivors – Ta Ta Rebels Inc. – Survivors Raise Hope.
There are great organizations that raise funds for Breast Cancer Awareness, research, early detection, to change legislation, and they are doing a fantastic job because statistics prove there are A LOT more survivors of Breast Cancer.
The questions is, why are there not any organizations that help the individual survivor maintain a healthy lifestyle, or with the added expenses of DME (Durable Medical Equipment such as prosthesis, custom bras, compression sleeves, etc.), co-pays and deductibles for therapies. Where is the awareness of “Survivorship” and all that it involves? Ask a group of 50 people if they ever donated to Breast Cancer Awareness, or Early Detection, or to Breast Cancer.org. I can almost guarantee that 98% will raise their hand. Then ask if they ever supported a “Breast Cancer Survivor”, again I will almost guarantee that less than 5% will know what you are referring too. More women are surviving breast cancer, but living with it has not gotten much easier, either.
Survivorship is one of the most complicated parts of having cancer. This is because it is different for everyone. Survivors may feel some stress when their frequent visits to the health care team end after completing treatment. Every survivor has individual concerns and challenges. Survivors often experience long-term consequences of chemotherapy, surgery, and radiation treatments.
What are the Phases of Survivorship?
These three phases of survivorship describe the specific period a survivor is going through:
- Acute survivorship begins at diagnosis and goes through to the end of initial cancer treatment. Cancer treatment is the focus.
- Extended survivorship begins at the end of initial cancer treatment and goes through the months after. The effects of cancer and treatment are the focus.
- Permanent survivorship is the period when years have passed since cancer treatment ended and recurrence seems less likely. Long-term effects of cancer and treatment are the focus.
This year we are celebrating National Survivors Day. (Click here for more information.) We will have a table setup with our non-profit & event information, samples of compression sleeves, LTA (Lymphedema Treatment Act) materials, and chances of FREE passes of miniature golf at Hershey Adventure Sports and Leisure Bowling & Golf Center for everyone that visits us. We will have our third event (first as 501c (3) registered nonprofit) and it is our hope to spread the awareness of “Survivorship.” It is because we endured that there is Hope for those newly diagnosed.
Thank you for taking the time to read our story.