Blog Archives

In loving memory of Lori Buckfire

Dear Lori,

You came into my life two short years ago and you touched me in a way so few people have.  We were instantly connected by our genetic mutation and our unending desire to see a world without cancer. 

With Lori at Relay for Life in 2008.

You introduced me at Relay for Life as a cancer warrior but you were the cancer warrior.  You fought Ovarian Cancer like a champion for so many years.  I admired your strength and your ability to find the humor in nearly every situation.  I looked forward to reading your blog posts and laughed out loud at your frank and hilarious stories.  Tomorrow will be a sad day for the thousands of people who were lucky to know you.  You were loved and admired by so many.   And we will all continue to fight this dreaded disease in your memory and in your honor.  

With love always and forever,

Ellyn

Advertisements

One more little request

With Representative Wasserman Schultz

This is my second post in one week.  Pretty certain you’re reading this and running in the other direction wondering what I want you to do now.  I know, every time I post, I’m asking for you to do something but this one is really important (OK they are all really important).   But this one is really really important and can seriously impact lives.  Representative Deborah Wasserman Schultz introduced #HR1522 legislation into Congress which will establish Hereditary Breast and Ovarian Cancer awareness week and make Wednesday of that week National Previvor Day.  We need 100 co-sponsors in the house by August 2 and right now we have 20. 

Please take action quickly for my good friend Sue Friedman–who left a career as a vet to start FORCE over a decade ago.  Take action for so many of my friends who’ve learned they have a BRCA mutation and have taken preventative measures before they’ve gotten a cancer diagnosis.   Take action for way too many women who are battling metastatic disease because they found their cancer too late or had a recurrence.  Take action for all the young women diagnosed with cancer because BRCA strikes younger women and is much more aggressive.  Take action for the young girls in our lives who need to know about hereditary cancer so they can live long, healthy cancer-free lives.  Take action now because August 2nd is quickly approaching.

Help fight Ovarian Cancer today!

I’ve said before and I’ll say it again. I’m a lucky survivor. I caught my cancer early, I got my treatment and I feel great today. I did everything I could do to fight cancer—double mastectomy, lymph nodes removed, chemotherapy, oophorectomy combined with a full hysterectomy. My oncologist told me that even the most conservative radiation oncologist would not suggest radiation. I count my blessings everyday and continue to fight for my friends, Cousin, Mother, Grandmother, Aunt, Sisters-in-Law, Daughter and all the other women and girls out there. Until there is a cure, we must be absolutely vigilant about our health. In the world of breast cancer, there are many things we can do. We can know our genetic status, we can go for yearly mammograms (or more frequently, if necessary), and we can do monthly self-breast exams. We can catch this disease early.

Unfortunately, we are not so lucky with other cancers—specifically ovarian cancer. But there is something that everyone can do right now—today–to help in this fight. We can ask our Senators to support two very important ovarian cancer programs. One is dedicated to research and one is dedicated to raising awareness so we can catch this disease earlier. This will take no time but it will help save lives. Please do your part for all the women in our lives. Together we can continue to make a difference.

OvaSure or not?

On Wednesday, we had another great FORCE “Positively Empowered” meeting. The weather was terrible, the roads were terrible and the turnout wasn’t great but those of us that were there had a really nice time. We could have stayed for hours. In fact when the meeting was over, we reconvened in the bathroom for a show and tell and ended up chatting an additional 20 minutes. I’m happy to show off my new perky breasts to anyone considering a mastectomy. I was never one to go to support group meetings but these are so much fun and I’ve met so many super women.

I’m so thankful for Whitney Ducaine at Beaumont for working so hard on these meetings. She gave a really great overview on the new diagnostic test for Ovarian Cancer—OvaSure. While some researchers felt this was the best invention since sliced bread, there is lots more work to be done. Whitney agrees completely and feels this is not yet a recommended diagnostic test. In the one study that was done, they did not look at any BRCA women which would have been a critical component in determining the effectiveness of the test. Whitney did a great job of showing us the limitations at this point.

From a patient’s point of view, it’s always hard to know who to trust, who to listen to and what studies to read. It’s especially difficult when well-respected research centers put out information that is highly contested. And the more questions you ask, the more confusing it can get. Luckily, research plunges forward and the more studies we have, the more we will know.

%d bloggers like this: