I’m very pleased to feature a guest post from my friend, fellow advocate and founder of The IBC Network Foundation, Terry Arnold. Terry was diagnosed with inflammatory breast cancer in 2007. Even today, IBC is poorly understood and often misdiagnosed. If you are not familiar with IBC, you are not alone. In her post Terry shares some of her own personal story as well as what motivates her to push forward in her efforts to increase awareness and research efforts for IBC. Thank you, Terry.
Cancer and the Glass Ceiling
by Terry Lynn Arnold
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. The thought of undergoing exploratory surgery just to know how advanced your disease was makes me shudder.
The flip side of not being afraid is showing (or trying to show) our brave side, so we celebrate with pre-victory 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, he/she is not told, “Well that hand does not define you”, so why are we guilted out by mourning the loss of a part of our body?
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. Always one to go my own way regardless of what others thought, I was comfortable with that. Being in charge was a little harder than I expected. I was ill, green and hurting, but eventually my treatment was completed and cancer was not in control of my body anymore.
Five years later, I am happy to report that I gratefully wear the label of NED, No Evidence of Disease, post my diagnosis with Triple Negative Inflammatory Breast Cancer, TN IBC. (and no, that is not a “good” cancer, in case you did not know)
Now this is where I get to the glass ceiling – living post cancer, which sometime feels more like a glass box. The view is good, but I have limits on how far I can go.
When I was diagnosed with this rare disease, I was shocked. How could I have not heard about this lump-less form of breast cancer which does not show up on a mammogram?
I considered myself to be a well-educated woman, so I chalked up my lack of knowledge as being due to the rareness of IBC. I didn’t have much time to think about it then, due to the battle in front of me. I also soon realized that being triple negative was not a good thing either. I thought it meant I passed something. With cancer, to be negative is good right? Wrong…
When my treatment was done and I wanted to apply my hard-earned knowledge to help other women with the same diagnoses, that’s when I hit that glass ceiling.
It seemed my superpowers were only expected to go so far. Told to not let my cancer be more than a speed bump, suddenly there were limits. I was told to go back to my old life and enjoy each day to the fullest. But like being at a loud rock concert, where that white noise rings in your head all the next day, I couldn’t hear people well…and I couldn’t forget what I saw.
I saw very young women dying of something that no one was talking about.
IBC is an “orphaned” form of breast cancer first written about almost 200 years ago, but mentioned only in passing with little or no attention paid to it until recently. Discovering this was maddening to me, because IBC has the highest percentage of death of all known forms of breast cancer. To die from IBC is a hard death, a painful one, but to live after it is painful too because you would do anything you could to save someone else from that suffering.
I understood those who reminded me I was supposed to be grateful I was alive, get over it, get on with things and get reconstruction, as if my wholeness was waiting for me at the plastic surgeon’s office.
I was grateful, but I was also outraged.
Was this where my road was to end?
What was I to do for the betterment of the cause?
Every “pink” door I knocked on led to disappointment and more ringing in my head. The sound I heard was the voices of women, IBC patients and their families, many who became close friends of mine, pleading with me to tell someone, to do something about IBC.
It seems though, that I can only be an advocate up to a point that is not uncomfortable for others. It also seems that many people are convinced that we do not have to fear breast cancer anymore and certainly we are not supposed to die from it.
Today some people are cavalier and sometimes ask the newly diagnosed breast cancer patient, “Is this the good kind of cancer?”
I feel like the guardians of our cancer health and especially breast cancer health have let me down by not talking about IBC.
Rare does not mean never and even if the knowledge we are given about this disease that typically does not show up on a mammogram, has no early detection, can’t be discovered earlier than a stage three and has a low survival rate is a frightening reality, it can’t be more frightening than being handed that diagnosis.
We need to talk about the “uncomfortable” forms of breast cancer, like Triple Negative and Inflammatory Breast Cancer.
The first step to a cure is discussion. Discussion will lead to education, knowledge and research and in time, pray God, a cure.
founder, The IBC Network Foundation
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, that was also Triple Negative. In treatment for almost a year, enduring six months of chemo, a double mastectomy and daily radiation for 6 weeks, now she is focused on educating every person about IBC, its symptoms, best treatment plans, and funding research. Ms. Arnold is the founder of The IBC Network Foundation, a 501c3. With one IBC research project funded, she has her sights set on funding research and education for the general population as well as the medical community. She looks forward to the day we can all remember that 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.
Do you know the symptoms of IBC?
Why do you think there is so little awareness about IBC?
To learn more about IBC, please visit The IBC Network Foundation