Engrossed in an article I was writing, I looked up and said “What?” My daughter, Veronica, was standing there, laughing and repeating what I missed, rushing to speak, “1,2,3,4 make a wish! . . . 1,2,3,4 make a wish! Oh you missed it. You are supposed to make a wish when the clock has the numbers all in a row like that.” She smiled at me because I didn’t know the childhood game. In turn, I smiled back because I thought it was dear that at the very grown up age of 25 she had not lost the hope of wishes coming true.
Since my diagnosis of Triple Negative Inflammatory Breast Cancer (IBC) in the summer of 2007, I have wished and prayed and talked and begged and hoped.
I wished I could have spared my husband and children watching me almost die.
I prayed that regardless of where my cancer journey led me that I would have the grace to do what I needed to do and do it well.
I talked to anyone and everyone I could get to listen to me. We know that breast cancer is a horrible disease, but we need to add something new to the breast cancer conversation. There is a grand dame of breast cancers called Inflammatory Breast Cancer, and we need to talk about it.
And I begged.
I begged people to help me do something to make the situation better. I had a plan. I wanted to educate the public, to educate the medical community and to fund research for this orphaned form of breast cancer. The word “rare” got in the way of my message giving people a false sense of safety. The world “rare” does not mean “never”, and the word “rare” offers little comfort when it is you.
At first it was slow. We have a society drowning in pink fatigue, so to get someone to listen to my message was a difficult mission. To deliver information as different as IBC facts was very challenging. A mammogram does not read it. IBC does not commonly present with a lump. There is not a form of early detection, so the patient will not know they have it prior to a stage three. It tends to strike younger women. IBC has a skin presentation that can come on overnight. IBC is viewed as the most fatal form of breast cancer. The list of what is different about IBC is longer than the facts of what we do know about the disease itself.
And I hoped.
As I wished, prayed, talked and begged, my hope grew, and honestly it was as if it took on a life of its own. People were listening, people shared my hope, and the medical community encouraged me along. Doctors who treat women with IBC were calling me, asking me to help them so they could better diagnose IBC. Patients were calling me because they heard I was healthy six years post my diagnoses and that gave them hope. I made friendships with young women like Casey Edwards and Lori Grennan, who shared their IBC story with me and were both passionately working to get research funded. Researchers frantically seeking grant funding were calling for support, long tired of reading the letters sent in reply to their funding requests. The letters of refusal almost always had the same language: “Great science, clearly will save lives, but since IBC is a rare disease with little global impact, grant refused.”
Now I would like to share some numbers, not 1, 2, 3, 4, but $30,000 and $75,000. Those numbers are the ones I am wishing on. Those numbers reflect the total donated to IBC research via The IBC Network Foundation. Combined, that is over $100,000 of funding raised in the past 14 months. For you Casey, and Lori, not in time to help save your lives, but wishing, none the less that our hearts desires are granted.
Hope always, Terry
Update on funding – As of April 2015 we have funded $330,000 to research. Please see updated list of funding here.