This post comes from Terry Arnold who was diagnosed with Inflammatory Breast Cancer(IBC) in her right breast, in August of 2007, after months of misdiagnosis. She was also told that her left breast had a cancer as well. She was in treatment for almost a year, six months of chemo, double mastectomy, and daily radiation for 6 weeks.
Terry has been married to Calvin, her husband, for 32 years. She is a mother of five children, a mother in law and grandmother of three with another due in February of 2013.
Terry is focused on educating every person about IBC, its symptoms, best treatment plans, and in funding research. With one IBC research project funded by The IBC Network Foundation, Terry the founder and chair of the foundation, has her sites set on funding more research by the end of 2012. 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.
On this date, five 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.” Now before you think that any doctor shouldn’t look at you and say when your time is up, please don’t go there.
We need to realize that there are serious conversations held between doctors and patients in those pink lined offices in a place I call “the other side of the ribbon”.
Five years later, after a Triple Negative Inflammatory Breast Cancer (TNIBC) diagnosis, I am in the 20%-40% group who make 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. I would 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 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 am not living with the mindset that the other shoe will drop any minute and I will drop dead in the street. I learned a few years ago how to control and cope with recurrence reality. What I didn’t expect when I woke up this morning, knowing today was ‘the day’ was the rush of memories from the last five years to be so strong.
My memories have ganged up on me and it seems I am featured in a silent movie, and I am the only guest of this private showing in my mind. Personally I would rather not be in this place, but my memories are part of who I am. So even though I know the story, I can’t help but watch. 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 and it was perfect. I was lightly scolded for being late, “Women get biopsies all the time” my boss said, 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, I don’t remember telling my children. I don’t remember a lot of things. But I do remember love, care, and concern and most importantly, hope. I hoped to live long enough to follow the only instructions my first doctor gave me, he suggested for me to go home “arrange my affairs.” What does that mean I wondered? I knew he meant my funeral and other such things, but to me my affairs were my family, my friends, my faith, and how I wanted to be remembered.
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 too, who I have met on a new level, ones who I only thought I knew, as the pain of cancer gave me insight into them, and to them a new insight into me. Every step has renewed me, every loss wounded me, and battled and scarred me, but 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. I hope by reading this, the next time you see a pink ribbon, 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 disease 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.