Ellyn Davidson’s Weblog

I was recently sent some press releases from a writer friend of mine about a conference that is going on right now. The Department of Defense Breast Cancer Research Program is conducting the conference to showcase their vision of eradicating breast cancer. Since I’m extremely interested in all things breast cancer, I decided to dig into the press releases and the conference agenda to see what they are talking about. I must say my head is spinning-the agenda alone is 22 pages long. The sessions are endless, and I’m pretty certain I wouldn’t know which way to turn if I was there. It’s amazing how many medical terms are so familiar but there were a million more I wouldn’t even try to pronounce. I was most interested in the press release entitled “Breast Cancer Vaccines Offer Hope for high-Risk Patients as Promising Data are Presented at 2008 ERA of HOPE Meeting”. There are so many vaccines in the works including clinical trials to prevent recurrence of cancer. I was particularly interested in a study at Arizona State University to create a vaccine to be given to healthy adults to prevent breast cancer. I did a little google search which returned hundreds of links to breast cancer vaccines.  It is so promising to see how much is happening in this area.  I can hope and pray that my kids don’t have the BRCA gene, or I can continue to raise money to help fund the amazing research that brings us closer to saying goodbye to breast cancer forever! If you would like to join me in the fight, please visit my 3-day team page to support our fundraisers or make a donation to any one of my team members. If you are interested in walking with us, please sign up and join us on this amazing adventure. 

It’s been a busy week with kids, work, a 3-day fundraising dinner and the launch of the Southeast Michigan Outreach group of FORCE.

In the middle, I squeezed in a quick infusion of bone medication. I was busy talking on the phone while the nurse was taking my blood through my port. She asked if I was getting a treatment. Assuming she was talking about a chemo treatment, I said “No. I’m getting Zometa” Since she was new, she wasn’t familiar with this drug and apparently assumed it wasn’t an infusion. I realized this when she finished taking my blood and took the needle out. Only I still needed it in for my infusion. So a second poke later, I was ready for my infusion. Lesson learned: It’s ok to multitask and talk on the phone while you are making the bed, unloading the dishwasher, walking on the treadmill but don’t try this with a nurse holding a big needle standing in front of you.

I also managed to have my final planning meeting with Whitney and Teresa for our Wednesday night FORCE meeting while I was waiting to see the doctor. Wednesday night was an exciting night. At 7:00 the room started filling with women of all ages, religions, ethnicities. We were all very different with very different stories and one thing in common-a BRCA mutation. We spent a long time on introductions and sharing our stories. Some shed tears while others spoke matter-of-factly. One woman shared a poem about her BRCA status. We shared our goals for the group and asked for input from everyone in the room.

It became increasingly clear that our number one goal is to provide support and outreach to other women. When you are diagnosed with cancer, your path is pretty clear. When you find out you are BRCA positive, the choices are endless. Should you choose a prophylactic mastectomy or increased surveillance? When is the best time to have these surgeries? Can you opt for chemoprevention and skip the surgeries? How about your ovaries? When should these come out? So many questions and things to sort through with answers that are not always easy. As a cancer survivor and someone who has endured the wrath of chemo, I say get rid of it all before you have to walk down that path. But what if you haven’t had children yet-the whole story changes. And even if you have had children, surgery is frightening. So we are here to support people, to help them sort through decisions, to help them prepare for surgery if that’s their route. We’ll happily show them our reconstructed breasts. Aside from outreach, we will raise awareness about BRCA and FORCE in the community. We hope to speak at events, speak to the media and share our story. We will encourage concerned women to see Genetics Counselors to discuss their family history. We’ve got great ones in Southeast Michigan including Whitney Ducaine at the Beaumont Comprehensive Breast Care Center. We will fundraise and plan local events to spread our message. We have lots of goals and big plans and lots of women out there ready and eager to help. If you know of anyone struggling with these issues, please send them my way or share my blog. We want women to know they are not alone and we will do everything in our power to touch as many as we can.

Yesterday was the last day of school, and I spent some time reflecting on the school year. My life has changed dramatically in the past nine months. When I left the kids on the first day of school, I was 3 days a way from my first surgery. I had no idea why I got breast cancer, and I also had long hair. Picking them up yesterday, I thought about how much they grew and learned during the school year and how much I learned during their school year too. I can blurt out statistics about the BRCA gene without a second thought. I know what my platelets, white blood cells and red blood cell counts should be. I know about the standard drugs for breast cancer treatment and the various treatment options – 6 rounds of chemo three weeks apart, 8 rounds of chemo 2 weeks apart. I know that after you have surgery, it’s important to start moving right away to begin the healing process. I know all the things you need to do to prepare for surgery including no Advil the week before and no lotion the morning of surgery. I know the best pain medicine and the best anti-nausea medicine. I am a wealth of knowledge about things I never learned at the University of Wisconsin business school. In some interesting way, I enjoy my new found knowledge.

Today I discovered something else while reading an article sent to me in the Globe and Mail. 1 in 44 Ashkenazi Jewish Women carry the BRCA mutation compared to 1 in 400 in the general population. The new thought is that lots of Jewish women with no family history could be walking around with the BRCA mutation. This is interesting and empowering information. They are currently doing a study in Toronto testing Ashkenazi Jewish women without a family history. The test will help determine if BRCA screening will become something routinely offered to Jewish women.

I am getting ready for my first FORCE meeting next Wednesday. It will be interesting to discuss moving our local outreach group forward. I have big plans for our group and hope that we can make a difference in Southeast Michigan. While knowing you have the gene is scary, knowledge is power. We are here to spread the word, support women and make a difference. If you are interested in learning more about FORCE or BRCA, visit their newly redesigned website which has a wealth of information.

On Saturday, I had the opportunity to experience Relay For Life-an absolutely amazing event. All of the survivors walked the track for the first lap together with our families. There were all kinds of events throughout the day to raise money, celebrate and honor cancer survivors. I left for a portion of the day and returned around 9:15. Jon and I walked the track and stopped to listen to the beautiful Havdallah services in the Temple Israel and Temple Shir Shalom tents. At 10:00, they shut the lights down and the track was illuminated by thousands of candles. Lori Buckfire introduced me, and I gave my speech. You can watch the video below.

I’m looking forward to doing more with Relay next year. Hope you’ll all join me for a great event!

I was interviewed earlier this week about genetic testing in children on ABCnews.com and I just read the story.  They wanted to know my opinions about testing children, and I shared lots with them.  What’s the point in testing them when we can’t do anything about it for so many years?  I may be hopelessly optimistic but as long as I continue raising money, building awareness and motivating others to become involved–maybe in 12 years, we won’t have to worry about breast cancer.  I spoke to the woman for quite awhile and shared my thoughts and feelings.  I told her about my newest venture creating a Southeast Michigan outreach group for FORCE (facing our risk of cancer empowered).  I can sit around and worry or I can do something (or lots of somethings).  Now I’m back to working on my speech for the Relay for Life luminaria event Saturday Night.  Hope to see you there!

 I was just sent a link to a blog in the NY Times entitled “When Breast Biopsies Aren’t Necessary.” The blog states that waiting 6 months for a follow up after a “probably” benign lesion is a safe option. It goes on to say that of the 45,000 women that were followed only 1 in 100 were eventually diagnosed with cancer 6 to 12 months later. According to my math, that’s 450 women that had cancer and delayed diagnosis risking the spread of deadly cancer cells. While I’m not a doctor, I think I can reasonably comment on this. I was one of those women told to come back in 6 months. While my mammogram didn’t show anything, my ultrasound showed a “probably” benign something. Thankfully, I didn’t wait. Both my doctor and I decided any lump in your breast is one that shouldn’t be there so we scheduled surgery and you know the rest. I’ve later heard over and over again that a palpable lump needs a biopsy, and I will continue to spread this message. We have to be advocates of our own health. We cannot let people tell us to wait 6 months because we are all at risk for being the one cancer case that goes undiagnosed. If we are that “1″, the statistics mean absolutely nothing. Breast cancer is treatable and curable but the earlier it’s caught the better. We have to be aggressive with diagnosing and equally aggressive with treatment. I intend to live for a very long time, and I am thankful that my cancer was diagnosed before it was too late.