Terry Arnold was diagnosed with a right inflammatory breast cancer (IBC) in August 2007 and a left contralateral tumor soon after. She underwent weeks of chemotherapy, radiation treatment and eventually a double mastectomy. She completed treatment in June 2008.
Through the efforts of IBC ambassador Terry Arnold, State Comptroller Susan Combs, State Senator Joan Huffman and State Representative Carol Alvarado, the Texas State Senate and House of Representatives will be hearing resolutions to bring awareness to inflammatory breast cancer.
On Wednesday, May 4, the resolution will be heard at the state capital in Austin.
After the reading, I was giving the flag that flew of the capitol that date.
To stand on the steps of the capital in my home state for a cause is not unfamiliar to me. However, standing there wanting to draw attention to something as intimate as the loss of my breasts to a rare and highly fatal cancer is a horse of a different color.
The journey begins
Please allow me to start at the beginning of a journey that has brought me to this place, a place beyond advocacy, but to a fight for life — my life and the lives of many other women.
It was the summer of 2007. Too much of anything is usually not a good thing. With so much rain, combined with the heat, nothing was growing, or so I thought. Not lumps, but sheets were growing, in my right breast, a rare and fatal form of breast cancer. I was just as helpless to do anything about it as those little tomato plants dying in my garden.
On Sept. 11, 2007, I was diagnosed with something I had never heard of, inflammatory breast cancer. Looking back, I view it as my own personal 9/11. I must have seemed an unusual patient to the staff at MD Anderson’s IBC clinic. I was scared, but excited to be there.For months I had been bounced from specialist to specialist, being given various opinions as to why my breast was enlarged, feverish and hard. They ranged from things that almost made sense to the ridiculous. With the grace of God and really great care at MD Anderson, I am pleased to report my current IBC status is NED, no evidence of disease.
Joining the fight
With IBC behind me, I wanted to do my part. Hoping to educate, I worked with Diana House, an IBC sister (may she rest in peace), filmmaker Matthew Steinhart, Dr. Massimo Cristofanilli and Dr. Wendy Woodward, leading experts in the disease, to create a short video to tackle the serious topic of IBC. “The IBC Project” has been added to many cancer-related websites and I don’t think it at all bold for me to say the information in the video has saved lives.I began receiving encouragement from IBC patients worldwide, who wanted everyone to know about this breast cancer, how it presents most times, without a lump, and that a quick and accurate diagnosis is vital to a chance for a tomorrow.
Along with the video, a mapping project was started for IBC awareness, international support groups were being formed, and I looked back to my home state, Texas.
Fighting on home turf
I am a Texas girl and was so grateful that my home state housed, funded and supported the cause of IBC research and treatment. I realized that Texas could still do more and support could be shown by writing an IBC proclamation or resolution.The process started by making phone calls, writing letters and emails, thanking Texas leaders for what they had done but requesting that they continue to lead in the IBC fight with an official statement.Not gaining any ground with this idea, it was difficult not to be discouraged. And seriously, what could I really expect? Texas has led the way and along with the good staff at MD Anderson, great work was under way at the Morgan Welch Clinic. But something in me would not let me put this down.I think it was the stories of the young women I had befriended — Lori, a physician from Ohio, or Gail, a local elementary school principal, both young with young children. It was their fighting for themselves and their children to have a mom at their graduations and weddings that would not let me stop.One day at an election event, I hit pay dirt. Susan Combs was standing alone and I asked for a moment of her time.I quickly told her who I was, what I was doing and about the women who need Texas to do all it can for the greater good and education of IBC. I will never forget the feeling, the minute she took my hand, looked me in the eyes and said, “I promise you, this will happen.”We connected. And one connection with a caring servant leads to another connection and another. Now, what was one, is many.On May 4, with the support and assistance of State Comptroller Susan Combs, Senator Joan Huffman and State Representative Carol Alvarado, the Texas State Senate and House of Representatives will hear resolutions to bring awareness to inflammatory breast cancer.
Terry Arnold
