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The other side of the ribbon

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othersideoftheribbon.JPGTerry Arnold was diagnosed with a right inflammatory breast cancer (IBC) in August 2007 and a left contralateral tumor soon after. She had six months of chemotherapy, a double mastectomy and daily radiation treatment for six weeks. She completed treatment in June 2008 and has been an IBC ambassador and advocate since.

On this date five years ago, I was told, "Mrs. Arnold, we are sorry but it's most likely too late." It was after four months of hearing, "Mrs. Arnold, there's nothing seriously wrong."
 
What a jump, from "not to worry" to "you have an out-of-control cancer that most physicians have never heard of, and treatment knowledge is limited." 

Now before you think doctors shouldn't look at you and say when your time is up, we need to realize that there are serious conversations held between doctors and patients in those pink-lined offices. It's a place I call "the other side of the ribbon." 

Hope and surviving

After a triple-negative inflammatory breast cancer diagnosis, I'm in the 20% to 40% who make it to the five-year mark. Although I'll be always monitored by my oncologist, society labels me a survivor -- a word I'm most uncomfortable with.

Too Soon

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weddingterry.jpgTerry Arnold was diagnosed with a right inflammatory breast cancer (IBC) in August 2007 and a left contralateral tumor soon after. She had weeks of chemotherapy, radiation treatment and eventually a double mastectomy. She completed treatment in June 2008 and has been an IBC ambassador and advocate since.

It was like someone slapped me. 

A simple post on Facebook, "I'm in a relationship, yes, I am dating again!" I shook my head, as if I could clear the words from my mind, re-read the post and it would make sense. It didn't change anything. 

The post read the same, but now, was followed by happy tidings for the future.
Why was I so upset? Why was this so personal to me?   

The poster's wife of many years had passed away due to inflammatory breast cancer three months ago. Too soon to date? Not too soon to date? Not even casual dating, but a "relationship."  

I wasn't judging, just stunned.   

Just like cancer comes without rules, life post-cancer is confusing. And everyone has an opinion, a suggestion and a horror story, sometimes all rolled into one.   

What's a surviving spouse to do?

Are You Affiliated?

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AreYou.jpgTerry Arnold was diagnosed with a right inflammatory breast cancer (IBC) in August 2007 and a left contralateral tumor soon after. She had weeks of chemotherapy, radiation treatment and eventually a double mastectomy. She completed treatment in June 2008 and has been an IBC ambassador and advocate since.

I recently received this brief message and a link to a "pink" organization from an acquaintance: "Thought you'd like to see this in case you are affiliated."

Are you affiliated? A song floated through my tired brain. The question wove around and aligned itself with the Jimi Hendrix song, "Are You Experienced?'

Are you affiliated? I went to visit a woman I know named Cindy, a 49-year-old mother of Ian, 11, and Jamie, 8. Cindy was in her last day of home hospice, after an 18-month, downhill battle against inflammatory breast cancer.

Are you affiliated? The older son came into Cindy's bedroom, unaware he wouldn't see his mom awake again. He absentmindedly leaned into me and I, with the absentminded habit of a mom of five, drew him near. He hugged me, looked up and said aloud, "I don't know you, but I love you."

Are you affiliated? When the family couldn't handle what was happening, I was the one wiping the bile off of Cindy's face; the vomiting was so bad. Finally, the emergency team came.

Are you affiliated? And when the ambulance doors closed in front of her house, I was the only one on the sidewalk to smile and tell her it would soon be OK.

terryarnoldinnyc.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 and has been an IBC ambassador and advocate since.

The messages tend to start like this:

OK, ladies, it's that time of year again: Breast cancer awareness! We all remember last year's game, wanting you to answer the question, "Where do you leave your purse at night?" as your Facebook status.

Well, this year it's slightly different.

You need to write your shoe size (just the number) followed by the word 'inches' and then a sad face.  

Remember, last year so many people took part that it made national news. The constant updating of status reminded everyone why we're doing this and helped raise awareness!

Do NOT tell any males what the status means; keep them guessing! And, please copy and paste (in a message) this to all your female friends to see if we can make a bigger fuss this year than last year!

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.


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