Note: Anne updated her story in April 2015.
I have learned many things in the last few years. These are things that I hope nobody else ever has to learn. While I am a strong proponent of continuing education for everyone, you will see why I don’t want anyone to follow my path.
In February of 2002, (February 14 to be exact) I was diagnosed with an aggressive disease known as Inflammatory Breast Cancer. This is not your regular “plain vanilla” breast cancer, and it is not treated in the same way. Within a week, I had undergone two surgeries–the first two surgeries of my life — one to do an extensive biopsy and the other to insert a port through which I would receive chemotherapy for the next six months. In August, I went under the knife again, this time for a bilateral mastectomy.
My medical team finished everything off with a few weeks of radiation. I am happy to say that after the surgery, I was declared cancer free. In just a few months after my active treatment ended, some of my strength started to return, and I was almost back to normal. In the last few years, I have had too many scans and tests and biopsies to count. I have experienced a couple of scares and flare-ups of my disease, but my medical team has been able to fight those back and keep active disease away from me.
Following my treatment, and even while I was in treatment, I became more active in advocacy groups and support organizations. I discovered the Inflammatory Breast Cancer Research Foundation and become active in their efforts to educate the world about this terrible form of cancer. I also became a volunteer in the Reach to Recovery Program of the American Cancer Society. Through this program, breast cancer survivors reach out to newly diagnosed patients to offer them support, an ear, and a path forward.
Five years ago, I started volunteering at my local breast center. Every week, I see literally hundreds of women sitting in the waiting room in little pink vests waiting for their mammograms. Each week, dozens of these women will be diagnosed with breast cancer. We need to work together to stop this nonsense.
Several years ago, I learned about the Department of Defense Breast Cancer Research Program and the role of the Consumer Reviewer. I jumped at the opportunity to use my academic abilities to read and think and write, combine those with my personal experiences with an awful disease and the side effects of treatment, and discover this tremendous way to really make a difference to the future of medical research. I was delighted when one of my staff partners at the American Cancer Society agreed to sponsor me as a Consumer Reviewer.
Recently, my wonderful oncologist recommended adding a brand new drug to the mix of things we are using to ward off any progression of my disease. In my research of this new drug, I discovered that it was just released to the market, having been pulled out of clinical trial early. I was thrilled to find out that some of the initial research on this drug had been supported under the Department of Defense Breast Cancer Research Program. What an amazing thing to know that I am helping advance research that could actually be helping me to stay alive. I now have even more reasons to be involved in this program.
My experiences have taught me some very important lessons.
First, life is too short. Simply that. Life is too short. It is important to do everything that you can in the time that you have.
Next, I have developed an astounding ability to say and do what needs to be said and done. I have always been pretty vocal. Now I realize how important that is and plan to speak up whenever necessary. I am no longer afraid to say anything. This has served me well in my role as a Consumer Reviewer. I am there to speak the words of the breast cancer patient and survivor in order to help improve treatment and reduce side effects, and some day stop this madness that is breast cancer.
Take care of yourself. I would encourage you to learn a little bit about Inflammatory Breast Cancer, for yourselves and women you know. The motto of the Inflammatory Breast Cancer Research Foundation is, “You don’t have to have a lump to have Breast Cancer”, and this is really true. The symptoms are entirely different. I encourage you to go to ibcresearch.org and learn the symptoms. There is even a brochure that you can print out and share with others.
Don’t learn things the hard way — the way I did. Continuing education is essential, but none of us need to know as much as I do about chemotherapy and surgical procedures and radiation treatments. Fortunately, within that education I have had over the last few years, I did learn the most important lesson– “life is short”– make sure you use it, every minute of it, wisely.