On this date five years ago, I was told, “Mrs. Arnold, we are sorry but it’s most likely too late.” It was after four months of hearing, “Mrs. Arnold, there’s nothing seriously wrong.” What a jump, from “not to worry” to “you have an out-of-control cancer that most physicians have never heard of, and treatment knowledge is limited.” Now before you think doctors shouldn’t look at you and say when your time is up, we need to realize that there are serious conversations held between doctors and patients in those pink-lined offices. It’s a place I call “the other side of the ribbon.”
Hope and surviving After a triple-negative inflammatory breast cancer diagnosis, I’m in the 20% to 40% who make it to the five-year mark. Although I’ll be always monitored by my oncologist, society labels me a survivor — a word I’m most uncomfortable with. I’d rather think of myself as surviving, and hoping that the next headache I feel is just a headache and not cancer in my brain. The recurrence rate with triple-negative breast cancer and IBC are more common than not, and highly fatal, which you can see with the percentages I quoted. Please don’t get me wrong, I’m not living with the mindset that the other shoe will drop any minute and I’ll drop dead in the street. I learned, a few years ago, how to control and cope with the recurrence reality. Bad news takes longer I remember the doctor sitting next to me, after completing what seemed like a billion biopsies, crying so hard he could hardly tell me my diagnoses. I remember walking out into the lobby, with my bra full of ice, wondering how to face my husband, oldest daughter and her husband. How does one announce such news? I needed time to think, someplace not pink, someplace not emotional. I went to my job at the bank, a cold place all about numbers. It was perfect. I was lightly scolded for being late. My boss said, “Women get biopsies all the time.” I remember replying, “Bad news takes longer than good news,” and took my place at the teller line. I don’t think another word was spoken to me that day.
I don’t remember telling my husband or children. I don’t remember a lot of things. But I do remember love, care, concern and, most importantly, hope. Mostly, I feel grateful. Along the way to this day of celebration, I have met many wonderful people. I think often of the others diagnosed with this monster of a cancer, caring doctors and new friends. There are the people who I’ve met on a new level, ones who I only thought I knew, as the pain of cancer gave me insight to them, and them a new insight into me.
Every step has renewed me, every loss wounded me. 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 pink-washing or concerned over pink fatigue.
Mostly, I feel grateful.
Terry Arnold was diagnosed with IBC in her right breast in August of 2007 after months of misdiagnosis. As if an IBC triple negative diagnosis was not enough of a blow, she discovered her left breast had traditional cancer as well. In treatment for almost a year, six months of chemo, double mastectomy, and daily radiation for 6 weeks. Outside of being the best wife possible to her husband Calvin of 34 years and mother (5), mother in law, (3) and grandmother (5 and one more arriving Dec 2014), she is focused on educating every person to learn more about IBC, its symptoms, best treatment plans, and funding research. With one IBC research project funded by The IBC Network Foundation, a 501c3 she founded in August 2011, she has her sights set on funding more research by as fast can donations will allow. She looks forward to the day we can all remember than once, long ago, there was a disease called IBC that is now filed under an archive of past diseases because we have a cure. Hope always.