Guest Post by Terry Lynn Arnold, Founder - The IBC Network Foundation

Happy Birthday to Me

Birthdays mark milestones. For me, one birthday changed the course of my life. I had just turned forty nine when one morning I woke up with one breast significantly swollen. I soon went from a C cup to a D and my bra would not fit. Today, I am viewed as an Inflammatory Breast Cancer (IBC) survivor. I am very passionate advocate speaking out for greater awareness and education about this rare, but extremely aggressive form of breast cancer.

Never thought I would be here

Alive? Five years later after a Triple Negative Inflammatory Breast Cancer diagnosis? No, I did not think I would be here, but also I never thought I would get breast cancer. Not that I was special but I did not consider myself in a high risk category. I had no breast cancer in my family tree, ever, and I had five babies who I breast fed till their first birthday. I watched what I ate and exercised. I always thought I had excellent breast health. I was more worried about diabetes since my family has a history of it. The morning I woke with one breast swollen, an infection seemed to make sense. That is why even when I could not lift my right arm comfortably because the right breast area was so swollen and painful, cancer was the last thing on my mind. And it was the last thing on my doctor's mind as well.

Four months later

After seeing many doctors confused by my condition not responding to antibiotics, I was forced to start over with a new doctor. I needed fresh eyes and fresh thoughts because to me, even a child would realize there was something seriously wrong, but not only did we not have an answer, the several doctors I had seen were in disagreement of what was wrong with me. Again, the “C” word was not in any conversation, but that fresh set of eyes took one look at me and ordered a biopsy. You might laugh at me, thinking "Really, how dumb is this chick, four months have passed and she is just now getting a biopsy?" I would like to offer some ideas, as to how this happened. We have been taught early detection, self-examinations and mammograms “save the TaTa's” and all is well. We were taught cancer can't be seen and does not hurt. Myself and women like Michelle, who host this blog will tell you, you CAN see CANCER, and it does HURT. So here I am with an orphaned form of breast cancer, discovered in 1814, with not much more known about it now than in 1814. That is a scary place to be in. I went from “Mrs. Arnold there is nothing wrong, to Mrs. Arnold, you have Inflammatory Breast Cancer and we are so sorry we missed it and most likely it is too late ."

Being your own best advocate

I am by nature an advocate. I am a founding of the Laura Recovery Center for Missing Children, and a founding member of the first rape crisis program in the county, I am that person. However to be an advocate for yourself, when cancer has a head start on you is hard. Sick, but not realizing it, I was not at my best. Feeling flu-like and confused, my mental state made more sense as I realized the extent of my disease. Long out of the breast, the cancer was having a field day with my body, conquering parts of me, like a small army against a sleeping enemy.

I ran

I ran to the nearest teaching hospital focused on cancer, (MD Anderson, in Houston, Texas) and I remember thinking, I might not live, but by God, they will learn something off me and I remember shocking a doctor in the first few minutes of our visit by telling him to "Chop me up and figure this out, because I don't want this to happen to anyone else."

So they did

After a year of treatment, which included 6 months of chemotherapy, 8 months of being bald as an egg, a double mastectomy, because both breasts had cancer, 6 weeks of daily radiation, and 60 pounds heavier, I was done. I now have a new set of initials to my name, NED, No Evidence of Disease, the best wording a woman with IBC can hope for. I am the rarest of the rare. I had a rare cancer, and I am even a greater rarity, as I survived. Most women with IBC live only a few years, and for myself, I am now past the five year mark. I hope one day, as I will never be comfortable being called a survivor, (I am surviving) that more will be learned about IBC, so one day we can have true survivors. Where cancer is only in our past and one day, pray God, in the ancient history of diseases long cured.

Hope always,
Terry Arnold
TN IBC chick, dx, summer of 2007 NED and holding
Founder, The IBC Network Foundation

www.ibcnetwork.org