I “Founded” My Movement

Over six years ago, I was told “Mrs. Arnold, we are sorry but it is most likely too late.”  This came after four months of hearing “Mrs. Arnold, there is nothing seriously wrong”.  What a jump, a mind stretching leap from “not to worry”, to “oh my, you have an out of control cancer that most physicians have never heard of, and treatment knowledge is limited”.

When I was first handed my cancer diagnosis I went through a range of emotions, reactions and coping skills.  Flashing back to the late 1970’s when my grandfather was diagnosed with lung cancer I remembered my family whispering the “C” word. We were afraid if the word cancer came out of our mouths, it would somehow boomerang back and get us all.  Knowing how barbaric cancer staging was at that time, I can understand the fear. To have to undergo exploratory surgery just to know how advanced your disease could be, just makes me shudder.

Today some people are so cavalier that they will sometimes ask the newly diagnosed patient, “Is this a good kind of cancer?”  The flip side of not being afraid is how to deal, so we celebrate with pre-victory with parties.  I did, I didn’t know what else to do.  We call in all our girlfriends, and put on brave faces vowing to “beat it” and not look back at what was just a bump in the road.  Some of this might be due to some unacknowledged pressure from the “fight like a girl” banter that we are inundated with or some leftover poorly applied post-feminist fallout, that our breasts don’t define us.  I realize, of course, that we are more than our breasts…but if someone loses their hand to a disease or accident, they are not told, “well, that hand does not define you”, so why are we made to feel guilty for mourning the loss of a part of our body?  Couple this with the well intended comments about the “new breast and tummy tuck” you will receive makes being an advocate for breast cancer seem confusing to the outsider.  Clearly, no one wants anyone to suffer cancer, but breast cancer, seems to be in a world, for better or worse, all of its own.

In my cancer treatment experience, I was cheered on, told to be powerful, be my own best advocate, and be in charge of my journey.   Being in charge was a little harder than I expected. I was in treatment for a year, with chemotherapy, a double mastectomy, sans reconstruction, and six weeks of daily radiation. This was not just “a bump on the road”.  I was ill, green and hurting, but eventually, my treatment was completed and cancer was not in control of my body anymore.  In my cancer experience I felt like I was walking on quicksand.  Nothing was as I would have expected it.  I learned quickly that IBC was uncharted territory.  Although the disease was first written about 200 years ago, and is viewed as the most fatal of all the breast cancers, it did not even have a medical encoding number.  Textbooks to teach breast specialists about IBC?  We did not have those either.  The list went on with needs unmet and with each visit to MD Anderson’s Morgan Welch Clinic, the first clinic in the world devoted to IBC, I was meeting yet another woman in need.  They were newly diagnosed with more questions than answers.  I felt I was faced with an injustice, I just could not look away.  I lobbied the State of Texas to declare an Inflammatory Breast Cancer month.  It was read in the House and Senate. I formed Facebook groups to give women hope by meeting someone who had walked this inflammatory or triple negative path before them. The power of one because the power of many.  We met for lunch, helped each other with appointments and questions that some of the doctors would like answered too.    Each day brought a new opportunity to share information, education and hope.  Along the way, I realized there was a need for patient advocates to serve on research grant proposals and once again, the quicksand was deep and engulfing. The lack of research was just shocking for IBC and really not all that impressive for Triple Negative Breast Cancer either.  I just assumed that since breast cancer was such a hot topic, that breast cancer research was well funded.  To a point it is, but for the ones that are most fatal, like IBC and TN, the void is wide and deep.  Almost NO funds go to IBC and very little to TN.  Because of this, I have devoted my time, as a volunteer, to educate the lay community about IBC and TN but also do raise funds for research via a foundation I started, The IBC Network Foundation. In the last two years, we have funded $160,000 to research.

I am in the 20%-40% group who made it to the five year mark.  Although I will be always monitored by my oncologist, general society labels me a survivor, a word I am most uncomfortable with.  Every step has renewed me, every loss wounded me, and battled and scarred, I am here.

Do I feel victorious?  Like a survivor?  A warrior who slew her dragon?  Some days I do.  Some days I feel worn down by the mountain of need in the cancer world.  Mostly I feel grateful.  I hope by reading this, the next time you see a call to action, a request for a donation, you will remember me, and all the others like me, for whom breast cancer was not a bump in road and see me for the miracle I am.   We need miracles.   And one day we all can feel victorious when we truly have an answer for this because out of the 40,000 plus women who die each year of breast cancer in the US alone, the largest percentage of those deaths were due to Inflammatory Breast Cancer.