Barbara wants so badly for Inflammatory Breast Cancer (IBC) and metastatic cancer to be solved. We all do! She submitted her story today to Vice President Joe Biden’s US Moonshot cancer program. So to join her voice I sent my letter too. Did you write the White House? Tell us, here or on twitter @talkibc
The Other Side of the Ribbon
Almost 8 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”.
Now after a Triple Negative Inflammatory Breast Cancer (TN IBC) diagnosis, I am in the 20%-40% group who made it past 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 is even with my label of NED to still be fighting cancer daily. 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.”
My memories are pushed aside now, and replace with the daily experiences of women, literally worldwide who contact me, asking for help with inflammatory breast cancer. Researchers contact me as well. Seems this form of breast cancer is orphaned and even through it is the most fatal form of breast cancer, it has only received under 120 research grants in the last 10+ years. This disease is so orphaned I had to start a charity just to be able to fund research. I run it as a volunteer and we have put over half a million dollar in research in three years. A drop in the bucket for what is needed, but a start. I beg of you as strongly as I can to get behind research funding for inflammatory breast cancer because without research, hope is hard pressed to find.
Along the way in my personal fight and in fighting for others, 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, 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. We need research. And one day we all can feel victorious when we truly have an answer for this because the only way we will reduce the death rate from breast cancer from the 40,000+ women/year is by increasing the intensity of research on the very hardest problems – curing metastatic breast cancer.
Hope always, Terry Arnold
PS, a thank you to my husband who supports me running a charity as a volunteer.