Ellyn Davidson’s Weblog

Myriad Genetics is launching a public awareness advertising campaign in Florida to promote testing of a BRCA mutation (AKA the breast cancer gene).

As both a healthcare marketer and a woman with a BRCA mutation, I’m thrilled that they are raising awareness. But I’m equally concerned. I should preface this by saying I haven’t actually seen the advertising materials but I’ve seen some press on the campaign. They quote an OBGYN as saying it’s a simple blood test. Sure it is. Most of these tests are simple but it’s the results that are not in the least bit simple. The article goes on to say: “Although no test is completely reliable, doctors recommend that all women know their BRCA status.”

Does that mean that all women should walk into their Primary Care Physician or OBGYN and take the test? Should women start doing this on their 18^th birthday? Yikes. Are these doctor’s equipped to counsel women if they do have the BRCA mutation? Are they able to knowledgeably talk to the women prior to testing to discuss the implications of the test? BRCA is not something to take lightly.

If you have a known BRCA mutation, you have up to an 87% lifetime risk of developing breast cancer and up to 44% chance of developing ovarian cancer. Genetics Counselors are the people that should be drawing your blood, counseling you and guiding you through the process. They have the knowledge, the training and the time to give you what you need. I only hope that Myriad is making this clear in their advertising. This test is anything but simple.

I’m sure many of you concerned with breast cancer have stumbled across the same promising news I recently found on the internet.  I’m usually a pretty good internet surfer when it comes to medical information—I ignore the gloom and doom and try to focus on the positive things.  Really that’s how I try to approach my life and it usually seems to work pretty well.  Anyways, back in September, there was lots of press about a breast cancer vaccine that eliminated tumors in laboratory animals.  They are currently doing clinical trials in humans. 

And ABCnews.com recently told the story of a young woman with late stage breast cancer participating in this trial.  They go on to say that this is just one of 40 vaccines now being tested and the next step is to see if the vaccines administered much earlier could protect women from ever developing breast cancer.  They quote Dr. Jack Erban director of the breast-cancer program at Massachusetts General Hospital. “The likelihood, long-term, of a vaccine therapy being useful is quite high.”  Fantastic news for all women!  So if you wonder if the donation you made to the Breast Cancer 3-Day, the pink food processor you bought at Target, or any of the other millions of pink items out there are working, here’s your proof!  GOODBYE BREAST CANCER!!!!

Prior to having breast cancer and finding the BRCA mutation, I had no idea that Ashkenazi Jews had such an increased likelihood of carrying the genetic mutation (1 in 40 vs. 1 in 400 in the Ashkenazi Jewish population). Early last summer, Ashkenazi Jewish Women in Toronto were offered the opportunity to take the genetic test for free even if they had no family history of breast cancer.  This was a test to determine if women in Canada should be tested for BRCA just because they are Ashkenazi Jews.  In an earlier post, I mentioned a friend who recently found out she had the BRCA mutation.  Fortunately for her, her sister lives in Toronto and decided to sign up for the free test.  Now both she and her sister are making preventative decisions to ultimately avoid a cancer diagnosis.  This story raises a very interesting issue.  Should Ashkenazi Jews be tested for the mutation regardless of their family history?  What if my friend’s sister hadn’t been tested?  Would they have found out their BRCA status only after a cancer diagnosis.  I’m happy for her that both of them found this out and will hopefully avoid travelling down the cancer path.

During my cancer treatment, my kids helped to keep me happy and focused on feeling good.  They also said so many cute things that made me smile.  It’s fun for me to look back at my caringbridge site and remember some of the cutest comments and moments.  For those of you that read my caringbridge site, these stories won’t be new for you. 

My hair started falling out right before Halloween so I had the remaining hair shaved.  For those of you that haven’t experienced hair loss from chemo, it’s pretty uncomfortable when it’s coming out so I was very happy once it was completely gone.  I wasn’t sure how the kids would feel about the bald head but I found out quickly when I heard from another parent that my Kindergartener told her that his mom shaved her head and she looked beautiful.  That thought continued to echo in my head the entire time I was completely bald.  His sweet little friend couldn’t stop telling me how beautiful I looked and even said to his mom “Ellyn had earrings on and everything.”  Love those little boys.

Throughout my bald days, we had many playdates that ended with a couple of kids using my bald head as an art canvas.  I grabbed the washable markers, sat on a chair or the floor and let them decorate my head.   The kids had fun, and it made my bald head a lot less scary. 

Although the little guy was still pretty young, he loved my hats and bandanas.  In the beginning he tried to see if his hair would come on and off too. 

Little guy sporting my pink bandana.  I know he looks like a girl–this was before his first haircut. 

My daughter didn’t really care too much either way about my bald head.  But she had her own funny moments.  Early on, she named my port “lumpy” She made sure to hug me on the others side of my body to avoid an encounter with Lumpy.  One day after a chemo treatment, I apologize for being a little tired and a little cranky.  And her reply was pretty funny.  “I know Lumpy got medicine today” and she looked up in my eyes and asked “Was Lumpy scared?”

And one of my favorite stories was from the day before my last treatment.  I pulled this one right from my caringbridge site. 

“On Tuesday, Michelle convened my 7 year old and three of her friends to help make the brownie cake and cards. At the same time, my 5 year old and Michelle’s 5 year old were busy shopping with Michelle’s mom for an end of chemo gift. I got the cutest, sweetest cards from the 4 girls all decorated beautifully with “No More Medicine” displayed on the cards. One wished me a happy life and said she hoped I never had to do this again. As the girls were sitting around making the cake, they had an interesting discussion. One said, “I know we are doing this because Ellyn has cancer”, to which another responded with eyes wide, “Ellyn has cancer??” That’s when my daughter piped in, “Not cancer, BREAST cancer.” “Ohhhhhh” they all responded.”

Posting my blogs on Trusera.com has given me an opportunity to think back on some of my experiences last year and they weren’t all negative.  Yes, I’m glad they are in the past but I continued to live my life throughout the year enjoying many days and laughing with my kids whenever I could.   

I got in touch with an online health forum looking for some ongoing stories about my experience with BRCA.  I’ll be blogging there a few times a week for the next few months so I’ll post my blogs here too.  I know I’ll have some new readers over there but I want to make sure to stay with this blog too.  So here’s my first blog. 

Last week I had a conversation with a woman who had just found out she had the BRCA mutation.  We talked a lot about surgeons, surgery, recovery, etc.  Then she asked me a question and for the first time in a long time, I was at a loss for words.  “What do I tell my kids?”  Hmmm.  When I was diagnosed with cancer, I thought carefully about how to talk to my kids and what they needed to know.  I was open and honest and focused on how my cancer would affect their world.  I remember our first discussion well.  I had my biopsy two weeks earlier and told them about it when I came home.  They liked hearing the silly things I said when the Anesthesiologist started my Versed (the drug they give you as they are wheeling you into surgery).  So I started by referencing that surgery.  I was scheduled for my bilateral mastectomy 2 weeks later. 

We all sat around the kitchen table, and I started the conversation. 

“I have something called breast cancer.  I need to have some more surgery so they can take out the bad stuff in my body.  I’ll go to the hospital and stay overnight and I’ll be home the next morning.  I’ll be sore when I come home so we’ll have to be careful when we hug.  We’ll rent some movies and lie in bed together and watch them when I get home.  Do you guys have any questions?”

First question from my daughter (she was 7 at the time).  “Can we rent Hairspray?” 

Here comes my 5 year old son.  “No, we have to agree on the movie.”

After a few minutes of some sibling arguing, I told them we could rent more than one movie.  Fortunately at the time, my 1 year old didn’t have an opinion about that. 

Next question again from my daughter.  “Will someone remember what you say after they give you the silly medicine?”

I was pleased with the way the conversation went.  They were old enough to understand but young enough to still be focused on how this would affect them.  Perfect. 

Bilateral Mastectomy went well and I was on to Chemotherapy.  Another conversation.

“Guys, I’m going to have some yucky medicine.  It will make me pretty tired for a little while afterwards so I’m going to schedule some play dates for you.  You’ll go to your friend’s houses and get to eat dinner over and play for awhile and then come home.  Any questions?”

Another one from my daughter, “Can I go to Cara and Rachel’s houses?”

“Sure.  One thing that can happen with this medicine is that my hair might fall out for a little while.  I’m going to get a wig.”  I reminded my daughter about when she donated her hair a year earlier and her hair was used to make a wig for someone.   I even joked that maybe we could get her hair back for my wig.  They were pretty quick to tell their friends that their mom might be bald soon.

Once my hair fell out, they were fine.  I wore a wig or a half wig (wig with a hat) in public but when I was home, I was bald.  Couldn’t wait to take the thing off my head.  My kids did not mind me walking around the house with no hair even if their friends were over.  There were so many really cute comments and funny things that happened throughout my treatment and my 5 months as a baldy.  Stay tuned for another post when I’ll share some super cute and funny comments from my kids and my friend’s kids. 

I’m still not completely sure how you address the BRCA issue.  I know my kids are too young to understand a genetic mutation, and I would not want them to worry about their own health.  But I’m not entirely sure how someone could explain surgeries to their children without cancer.  I’ve asked for some feedback from the online health forum and my friends at FORCE so if you’re interested, please check it out.  I’d also love it if you’d join the network and become my friend. 

A couple of people sent me this picture today.  I’m sure most of you have seen it but in case you haven’t, I wanted to share.  Hope you enjoy.  And don’t forget to join the Army of Women, walk the 3-day, raise money or do anything else you can in the fight against breast cancer for this baby and all the other babies, girls, and women out there.

Just got back from a really fun weekend in Atlanta celebrating the Bat Mitzvah of my cousin’s daughter.  At the same time, I got to meet my other cousin’s 3-week old beautiful daughter.  And as a total additional bonus, I saw my college roommate after 12 years.  Wow!  It was all fun, busy, hectic and a little crazy with three kids in tow but it was good family time and lots of joy and happiness. 

On Friday, Jon and I loaded the rental minivan at the Atlanta airport with the 3 kids and bags.  It was the first time I’d travelled in awhile when my bags actually made it there at the same time.  This was good since the Halloween costumes and clothes for our weekend festivities were all packed in our suitcase.  As always, travelling with 3 kids can be a bit chaotic but we made it.  We quickly made our way to the hotel to change and head off for the Shabbat dinner.  As we were driving, I asked Jon if the stroller was still in the back of the minivan.  Stroller? He said.  Apparently in the chaos, we left the stroller (and three of our jackets) sitting curbside at the airport.  I tried unsuccessfully to reach lost and found throughout the weekend.  So we just hoped that someone had found our stroller.  Bright and early Sunday morning, we were back at the airport to head back to Detroit.  Lucky for us, Delta had our stroller with all three jackets.  Hmmm.  We’ll try not to do that again. 

Despite our lost stroller and a little bit of chaos, the weekend was great.  We were jam packed with activities and we even got to do quite a bit of trick-or-treating Friday night.  Little guy held up with no nap and very late nights.  And the big kids were a big help! 

It’s so nice to celebrate such great things in life!