Ellyn Davidson’s Weblog

I was so excited to get my mail yesterday and see the great cover story on the Detroit Jewish News on the breast cancer gene (BRCA).  I am so happy that Lisa Siegmann was willing to share her story to help so many women.  And I’m so grateful that the Jewish News recognized the importance of this message.  Social marketing can save lives–especially when it involves building awareness of an unknown risk factor.  Research into finding new diagnostics, treatments and a cure is essential.  However, we must make sure that a portion of our efforts are directed to raising awareness.  Until there is a cure, early detection and prevention for those at high risk is our life-saving hope.

Let’s continue to find ways to educate women and the community on BRCA and the risk factors associated with this genetic mutation.  I know there are many women, like Lisa, who chose prophylactic surgery only to find out  that it was only a matter of time until a diagnosis.  In this case, knowledge really is power.

Today is another big day.  Happy 1 year anniversary of blogging on ellyndavidson.wordpress.com.  82 posts and 101 comments later, I’m still going strong and having fun.  Thanks for joining me on my journey as a survivor.  Hope you’ll stick with me.

Immediately after my doctor told me I had breast cancer, I told him I was having a bilateral mastectomy.  There was no doubt in my mind that on drop of cancer meant that both my breasts were going.  This was before I even knew about my genetic mutation.  As soon as I got through all the scary screening (bone scan, chest x-ray, blood work), I started focusing on breast doctors and plastic surgeons.  I made my decision pretty quickly and was ready to go.  My path was clearly defined.  I would have the mastectomy, have expanders put in place, go through several months of expanding and ultimately exchange the expanders for my implants.

While I knew there were several other breast reconstruction options, none of these were an option for me and I didn’t even bother reading or discussing any of them.  I made up my mind and had the surgery.  So this weekend was a completely eye-opening experience as I talked to women about their DIEPS, GAPS, one-step with Alloderm and their nipple sparing mastectomies.  I’m sure there’s others that I’ve missed so feel free to chime in if I’m missing something.  Not only did I hear about them, I got to see them and even touch them.  From 8p-11p each night in the show and tell suite reserved for women only, women lifted their shirts and discussed their experiences.  Choosing a mastectomy is a tough and emotional journey—especially for previvors—who haven’t had cancer and it’s so wonderful that FORCE provides this avenue for women to share their experiences, see the results and get answers to their questions first-hand.

I’m heading back from Orlando now with lots of new friends.  Day two of the FORCE conference was great.  We started the day with a panel of researchers telling us about lots of studies going on in the area of hereditary breast and ovarian cancer and BRCA specific research.  It was so promising to see all of these brilliant people sitting in front of me telling me about research they are doing to benefit me and the entire hereditary cancer community.  And I know that the studies I learned about were only a fraction of the research going on in this area.

After this panel, I was completely energized and I had the opportunity to sit with a woman from Susan G. Komen and share my thoughts and hopes.  I can’t wait to continue my conversation with her and others from Susan G. Komen.  I was particularly happy to hear about the level of grants they are providing in the area of hereditary breast cancer—knowing that the $87,000 Ta Ta Breast Cancer raised in 08 is contributing to the tremendous research they are funding in the hereditary breast cancer—6.1 million dollars in 2008 alone.

I spent more time in the exhibit hall—bought a fair share of pink from my new friend Courtney from Pink Wings.  And got to meet Lindsay Avner—the founder of Bright Pink—an organization I’ve admired for awhile.

A group of 8 of us had dinner in Downtown Disney.  The number of fingers we’re holding up show whether we are BRCA 1 or 2.  In the group, we had 3 survivors and 5 previvors (women that carry the gene but have never had cancer).  We shared our stories over a fun Cuban dinner with a pitcher of Sangria and some Mojitos  added to the mix.  And most importantly we laughed a lot.

The day was packed with information, networking, meeting and connecting with new people.  I even squeezed in a long walk around Orlando and Disney with my new friend Debbie and ended the evening with a “Pure Romance” girls night in.  What a great day!

Taking a break in between activities at the FORCE conference. Time to put some thoughts down on paper. It’s been an inspiring experience with a bit of sadness too. There are 500 people here—some are healthcare providers but most of the 500 are women with a BRCA mutation or women who are at risk for hereditary breast and ovarian cancer. It’s unbelievable to hear everyone’s stories, their lives and their histories.

Last night, I met two women in their 20s here with their mother. Both women found out this past January that they carry the BRCA mutation. Now they are exploring surgery options. I can’t help but think of my own daughter when I look at these two young women and wonder where we’ll be in 15 years. I admire these women for their energy, spirit and acceptance of the genetic mutation. And I’m guessing that FORCE is helping them realize they are not alone and they do have options. That is the truly magical part of FORCE. There are so many women who’ve walked incredibly journeys— losing parents, grandmothers and siblings to cancer. And taking preventative measures like prophylactic surgeries so that they will be able to see their own children grow up.

I spent a little time walking around downtown Disney, humming to the tunes and watching families enjoy Disney.  It was nice to leave the hotel for a bit to have some time to think and regroup.  There’s no place like Disney to help you clear your head. 

After my walk, I checked out the exhibit hall.  There are wonderful speakers and exhibitors here sharing their knowledge and advice to show women they have options. Yesterday I had lunch with Informed Medical decisions, a company that provides genetic counseling over the phone. What a great resource if you live in a area that doesn’t have a genetics counselor or if your genetics counselor is booked for several months.

I also had the opportunity to meet a really energetic woman with da Vinci Surgery. That’s the name of the robot they used for my hysterectomy and oophrectomy.  Quite honestly, I didn’t know much about how the machine worked.

And how about this research study on whether or not exercise can reduce your breast cancer risk. If you’re high risk and under 40, you can qualify. And you get a free treadmill out of the deal. The study is coming out of the University of Pennsylvania and I met the researcher behind it who inspired me to go hop on the treadmill for a little afternoon exercise. So now I’m off to find some dinner. And later to the show and tell room where I get to share my breasts with lots of other women. More tomorrow!

One year ago today, I started another journey.  My life as a patient came to a close, and my life as a breast cancer mentor, advocate, and fundraiser was kicked into high gear.  Yes, a year ago today was my final breast surgery.  Once again, it’s hard to believe another year has passed.  And what a year.  Tomorrow I will venture to Orlando for the annual FORCE conference.  I can’t wait to meet many of the people I’ve communicated with over the course of the year.  I’m looking forward to learning more and taking in everything the conference has to offer.  I know it will be an exciting and educational weekend.  I know there is so much work going on in the area of hereditary breast and ovarian cancer, but yet there is so much left to do.

The top experts will be there, so if you can’t make it to the conference but have a specific question on hereditary breast and ovarian cancer, post it here.  I’ll try and get some good answers to share next week.

Yesterday was a wonderful Mother’s Day. It started off with a great breakfast prepared by my husband and children and ended with a super night at the Fisher Theater seeing Annie. The kids loved it and it was fun to watch them enjoy it so much. I loved it too. In between, we had a soccer game (kids against adults because the other team did not show up). And I even scored a goal. As I went through the day, I couldn’t help but think about all the people who didn’t get to share Mother’s Day with their mother because of breast cancer. Especially the younger women diagnosed too late and leaving young children. Consider this:

• Each year, 10,000 women under age 40 are diagnosed with breast cancer.

• 1,000 of these women will die.

• Breast cancer is the leading cause of cancer deaths in women under 40.

Breast cancer awareness has traditionally been focused on women over the age of 40. Today, we have the opportunity to change the faces of breast cancer awareness advertising and education by supporting the EARLY Act. I encourage you to help keep more mothers celebrating Mother’s Day with their children by sending a note to your representative. It’s simple and takes less than 5 minutes but it can change so many lives. Do it for your daughters, your sisters, your friends and your mothers. Let’s continue to fight this disease together.

Two of the many reasons why I continue to raise money and awareness in the fight against breast cancer — my daughter and my mom.

Everyday my TweetDeck is full of new breast cancer news.  What I should eat.  What I shouldn’t eat.  Which vitamins?  New ways to detect.  New genes found.  Etc.  It’s all very exciting and pretty overwhelming sometimes but it makes me realize that there are so many people thinking about this disease.  And that’s really good news.  I’ve taken small steps like switching to all organic cleaning products.  Not sure if it’s helping but I know it can’t hurt.

The latest news shows three genes that, when present, help breast cancer spread to the brain.  Why is this good news?  Because knowing the genes is the first step.  The next step is finding the way to block the process if this gene is present.  Keep going guys.  Don’t stop this research that will continue to keep me cancer-free and rid this disease from everyone’s lives.  I’ll keep raising money, spreading awareness, and listening to all the tips out there if you keep moving this research forward.

What steps have you taken to keep cancer out of your life?

Today I was contacted by the Breast Cancer 3-Day to be an online ambassador.  Once again, I have the opportunity to combine social media with breast cancer awareness, advocacy and fundraising.  I’m totally passionate about both and more than willing to do my part.

This month they’ve asked ambassadors to share some fundraising ideas.  My favorite one is approaching quickly.  In 3 days, 125 people will see Annie at the Fisher Theater in Detroit, celebrate mother’s day and help raise money for breast cancer.  I can’t wait.  Annie is my all time favorite musical and I am totally excited to share this with my family.  I’m also super excited because this fundraiser was so easy to plan, no downside risk and netted nearly $3,000.

Here’s how it worked.  My high school friend works for Broadway in Detroit.  After reconnecting with her on Facebook, we met to discuss a possible fundraiser.  From there, I reserved tickets to Annie, sent out emails and created a Facebook event.  As people were interested, they emailed or called with the number of tickets they needed.  I purchased the tickets at the group discount rate and sold them for face.  I collected checks, distributed tickets and called it a day.  Done!  I will absolutely be planning another one next year.

Do you have any super easy fundraising ideas to share?  Share them with me by posting a comment.

Time is flying by once again, and it’s hard to believe I’m already getting emailed training schedules with 10 mile walks.  Not sure where the winter went but spring is definitely in the air.  Just wish it would stop raining so I can get outside and get back to the walking.  For now, I’ll stick with the treadmill.

My last post was just before my talk with St. John Health, and I was very happy with how it went.  I got to meet the FORCE rockstar Sue Friedman in person.  We must have said goodbye about 15 times and just kept continuing on with our conversation.  She’s doing some tremendous things for our community and I’m so thankful for her work and her efforts.  I wish I had more time to work with her but I’ll do what I can in between work, kids and other breast cancer activities.

Finally, fundraising is going crazy.  Ta Ta Breast Cancer is up to 17 team members.  The group of 17 has collectively raised $12,410.12 through 191 donations and we are nowhere near done.  Thanks to all your support with all of our fundraisers to date, we have an additional $3,500 in funds for distribution sitting in our Ta Ta Breast Cancer account.  Each walker must raise $2,300 so the ongoing fundraising is really important.  Thanks to all my teammates for all of your hard work and all of you for all your support.  Last, we’d love to have any newcomers to our team.  So join in on the fun!