Thursday, May 17, 2012

Two Steps Forward and Three Steps Back

...or at least that's how it feels in the world of IBC some days.

Two steps forward....Just last night message boards and facebook pages were filling up with news of a new study done by MD Anderson (who else right?). Its a vaccine in phase II of clinical trials. While this vaccine isn't for IBC specifically its a huge leap in the right direction. Its for women who are now NED and were Her2 positive. Phase two ends this summer and phase three should start soon. This is so exciting! This is a vaccine to prevent recurrence. Who would have ever thought we would be this close to vaccine for breast cancer? I believe with all my heart that in my children's lifetime if not in my own we will also see a preventative vaccine. Today more info flooded the cyber world with more complete information about this vaccine.Two steps forward.

Three steps back...unfortunately the same message boards and facebook pages were also filled with news of another IBC sister who lost her battle. Katherine Shear was only 46. While I didn't know her or really even know of her it still saddens me. Each time we loose one of our own it reminds us of just how terrible this cancer really is. It also reminds us though how important awareness and research are.

Two steps forward....April 30th was another day of joy and celebration as The IBC Network funded their first clinical trial (I'll let you guess where lol). It was awesome to hear that this organization has reached a point where they can now donate money and fund studies that will help us all raise awareness and find new treatments for IBCers. The women behind this organization (Terry Arnold) is amazing. As a survivor of IBC She will not sit by and allow the world to continue to ignore this disease any longer. I'm so amazed by the work that she is doing. This just shows how a little hard work and dedication by a few people can change the world as we know it. I can't wait to see what The IBC Network will do next.

Three steps back...that same day IBC lost another great women. Cynthia Harrington age 48 and then the following day Debora Robertson age 50. I have heard wonderful things about these ladies and my celebration was again cut short by this news. We are not even half way through the year and we have already lost soo many including some of the major IBC bloggers. In February the world lost another amazing women and advocate Susan Niebur. I followed her blog closely. I even corresponded with her a couple of times. When I read her last blog entry which was written by her husband saying that she was no longer with us I fell a part. I couldn't even sit down and write about that one until now. I still visit her blog and read old entries. She was such an inspiration to me during treatment. She taught us not only how to live but how to die gracefully. These women and the ones that have gone before them are my heroes.

You may wonder why I'm blogging about this and why now. Why bring up the ugly fact that so many die from this. Why focus on something sad like death. Well partly because I'm sick of celebrations of advancements in medicine being cut short by loosing some of the very advocates that have helped get us to this point. I'm tired of seeing another sister taken by this cancer. I'm tired of hearing that its rare when there really are so many of us. I'm tired of people assuming that its just breast cancer and hardly anyone dies from breast cancer these days. I'm tired! So why name some of the women that we have lost even those I really didn't know? Because they are not just statistics, they are not just a number, they are women, mothers, sisters, wives, daughters, friends.

But of course I won't leave it at that. I have decided to keep a list of every name of every IBC sister that we have lost this year weather I knew them or not. While I'm saddened by the loss of them I will celebrate them! I will celebrate their life and their fight and I will continue this year after year. How will I celebrate and honor them? I'll save that for another time and another blog.........

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