Masthead

One IBC Survivor's Fight to Raise Awareness in Her Home State

| Comments (4)

terry.jpgTerry 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.


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.

4 Comments

Hello Ms. Terry Arnold;
I am a proud, born and raised Texan girl myself! Longview TX to be exact now living in Houston, married to a very handsome and talented musician (www.blaggards.com); with 2 wonderful children and was diagnosed with IBC December 2009. Mine grew so fast! The mammogram after Thanksgiving (late in Nov.) 11/2009 showed a 4cm mass... the MRI in late December 2009; showed a mass that was 11cm! It all happened so fast! I truly believe that had I been mis-diagnosed and given oral antibotics for the redness on each side of my right breast I would not be alive to write this to you today! (My BRCA II GENE is + as well) I have been an RN in TX for 19 years this month! Please contact me as I was never given a "buddy" during treatments, due to this cancer being so rare and so deadly. I want information that's up to date. I know I am still alive for a reason. I have faith in God's Word and Promises. As a nurse, helping others is WHAT I do. I love it. How can I help your cause?
I have my story on Caring Bridge... I also attend a support group here in Houston founded by Dr. Jennie Bennett. www.roasurvivor.org --- It is a wonderful group that is helping me learn to become a survivor... doing so has been the hardest part of this entire journey for me.
God Bless...
Kelly K Devlin RN SC

Dear Kelly,

I am so happy to hear you are doing well. As hard as it was to read, I am so grateful that you shared just how fast your cancer grew. People really need to understand just how urgent a timely diagnosis is with IBC for us to have a chance at a healthy future. I would love to be your buddy and I hope we meet soon. Please look for a private message send via email to you. I would love to share my ideas for IBC awareness, treatment, so much I want to do!
I look forward to meeting you,
Pax,
Terry

ps, I am married to a musician too! :)

In November 2009 I was diagnosed with inflammatory breast cancer. After hearing my diagnosis I got on line with MD Anderson to read about the disease. I went to Victory Breast Clinic for my diagnosis and was quickly sent to MD Anderson at the Bay Area where I was teamed up with Dr Kovitz my oncologist and Dr. Ballo my radiologist. A went thru chemotherapy and then had a double mastectomy, and then many treatments of radiation then I listed as NED no evidence of disease. That was in August of 2010. I was feeling so blessed I made it through the dreaded IBC by the grace of God and the expertise of my doctors. I continued going every three months for testing and everything seemed to be ok. I went in December 2011 and was still no evidence of disease. By February I began to breathe funny and was vomitting so I went to the er and within 2 days I found out my ibc had metatasized into my lymph nodes, bones, lungs, and liver. I am again in treatment with Dr. Kovitz at MD Anderson at the Bay area. The reason I write this letter is because I want all to know that the disease can come back fast and furious with almost no notice. Don't let anything that might bother you keep you from calling you doctor. I think at first I thought everthing every ache was cancer. I called and went to see Dr. Kovitz, he never got upset on the false alarms always assuring me it was better to be safe than sorry. I had finally made it to the 6 month check up but did not make it all the wat to 6 months. When I went to er I really thought it was just a virus or something. This was one time I was surprised. I guess the reason I am writing is to say never let your guard down. In the space of 2 months I went fron NED to it was everywhere. I am scared to death but have confidence in God and my doctors and know it is in My Father in Heaven Hands and the knowledge He installs in my very knowledgable doctors.

Terry,
I tried to email you offline rather than through a comment and it didn't seem to work. Is there an address that I can contact you at?

Thanks,

Mel

Leave a comment

Search

Connect on social media

Sign In

Archives