2019 is a year of milestones. March 18 was 25 years since my diagnosis of inflammatory breast cancer! At that time I never dreamed I’d live more than a year or two, at best. I was 41, grandmother to a 3 month old baby girl and anxious to see my daughter, and only child, graduate from high school. It was an emotionally packed time, to say the least. Now, 25 years later, I look back and marvel that we made it through those scary days and I’ve lived to see that baby girl grow up, marry and have two little girls of her own! How amazing is that?!?
This year the Inflammatory Breast Cancer Research Foundation will mark 20 years since its start! Milestone number two. Had that first event, my diagnosis, not happened I still might not know about inflammatory breast cancer and would be spending my days working as a nurse midwife! That was my plan 25 years ago before inflammatory breast cancer rudely interrupted things!
Those who knew me “BC” (before cancer) tell me they are surprised at the things I’ve done over the past 25 years. When diagnosed I was a “good pastor’s wife”, usually working quietly in the background making sure things were going smoothly but not interested to be in the spotlight and certainly not willing to speak out publicly. Apparently there is something about being told you’re going to die soon, when you’ve just turned 41, that reminds you life isn’t a dress rehearsal….this is it!! I was working in outpatient mental health at the time and worked throughout my treatment. When I reached one year from diagnosis I decided to complete my RN (I was an LPN at the time). Many thought I was crazy to go back to school. As my body began to struggle with the ravages of heavy-duty chemotherapy, I realized I needed more initials after my name, so started an RN to BSN program newly offered at Eastern Mennonite University, allowing me to keep working at my daytime job. It was becoming increasingly evident that I could no longer do the lifting and long shifts required in traditional nursing, so more education would prepare me for administrative work.
Little did I know that the research I was doing for my project thesis, a graduation requirement, would blossom into my new life’s work! I was researching support groups and how the internet might impact a patient being able to connect with others with less common cancers. (I have the bound volume of my project thesis to prove I was prophetic!!) I went into work early each day so I could use the computer for my research. I didn’t have one at home then. Remember, this was 1998-1999 and the internet was a relatively new thing! It was during one of those sessions that I stumbled upon an email discussion list about inflammatory breast cancer (IBC)!! I was so excited to learn there were others alive, dealing with this disease!! It was through this list that I met Owen Johnson, who’d lost his wife to IBC. He was a self-appointed IBC research advocate and anxious to have others join him. In the summer of 1999, while celebrating my graduation and 5 year survival, my husband and I met with Owen in Anchorage, Alaska, and signed onto this new venture, a non-profit called the Inflammatory Breast Cancer Research Foundation.
I was a somewhat reluctant advocate at first but as more opportunities came my way I began to find my voice. Reviewing grants for the Department of Defense Breast Cancer Research Program allowed me to use my medical background as well as my patient experience to influence research and I enjoyed it! As the organization developed, so did my comfort and experience in the advocacy world. I eventually gave up my ‘day job’ in nursing to take on full-time advocacy work, taking on more roles within the Inflammatory Breast Cancer Research Foundation and beyond. Working with a variety of researchers to facilitate IBC research, helping patients find a appropriate diagnosis and treatment, guiding patients in finding clinical trials, and attending lots of conferences have all helped shape my 20+ years of advocacy. It’s not the career I’d planned but I’m grateful for all the experiences and the amazing people who’ve come into my life as a result. Also, it continues to break my heart that so many of those amazing people have been stolen by this crummy disease, in spite of everything we try to do to stop it.
Right now I’m serving as an advocate mentor at the American Associate for Cancer Research (AACR) Scientist <-> Survivor Program. During the conference I’m helping six patient advocates, representing a variety of cancers, navigate this meeting of over 22,000 people. Most of these advocates haven’t been to a conference of this size and I’m helping them plan their schedule, figure out the sessions they should attend, then work together to present on what they’ve learned at the end of the 4 days together. I was fortunate to have advocates who helped mentor me along the way and feel a responsibility to ‘pay it forward’ for those getting started in advocacy. If we don’t do that, the important patient voice in research may be lost.
Before coming back to my hotel room tonight to finish this blog, I stopped to chat a moment with some researcher/friends from Indiana University. As I bid them goodnight, I said I needed to get back and finish this blog post and told them what I was writing about. When I shared the titled they laughed and suggest the alternate title and I promised to add it. I’m getting to be one of the ‘old timers’ in the advocacy community. I’ve never cared if people remember my name, but I do hope they remember my passion, dedication, and commitment to doing what I can to change things for the better not just in IBC but for all cancer patients.
So, bottom line….I’m fine with being known as someone who “kicks butt and takes names”!!