Ellyn Davidson’s Weblog

If you’re looking for a good laugh, check out my friend Lori’s blog post just another day at the “office”.  After you finish that one, read how she compares herself to Amy Winehouse.  Talk about inspirational.  You gotta love Lori. 

I’ve met so many great people through my cancer diagnosis.  And we all realize, there is lots to laugh about.  Yes, cancer is a horrible disease and I will do everything in my power to raise money and awareness to help find cures and better treatments.  But in the meantime, getting a cancer diagnosis does not mean you should stop living and laughing.  Lori is just one of many who continue to laugh, smile and live life through treatments, tests, procedures and surgeries. 

I am now 2 days away from the one year anniversary of my diagnosis.  The time is going so quickly.  I look back on the past year and wonder where it went–especially the past 6 months since I finished my treatment.  One year ago, I never imagined I would have a team of 26 people walking in the breast cancer 3day.  Ta Ta Breast Cancer is currently in the top 10 of all fund raising teams in Michigan.  We are rapidly approaching the $50,000 mark.  I know this $50,000 can make a huge difference in the fight against breast cancer.  It’s a fight we cannot stop until the disease is gone!  If you can donate and have not had the chance, please click on my team page and donate to any one of my team members.  I’ve made my $2,200 minimum but lots of my teammates are still working hard.  You can also check out our great fundraisers on my team page and help support us that way.  Or even better, there is still time to sign up and walk with us.  I promise it will be a memorable 3 days.

We just recently received confirmation that my dad has the BRCA genetic mutation and that’s how I got mine.  Unlike some genetic conditions, this mutation can only be passed down if a parent has the mutation.  Fortunately it doesn’t always result in cancer–particularly in men.  If you do have the mutation, each of your kids has a 50% chance of getting the mutation.  In my case, my dad has two children and we matched the statistics perfectly.  50% of us have the mutation.   It was actually great news.  If he hadn’t, it meant I got it from my mom and she’d be off scheduling surgeries.  If my mom had the mutation, it could impact my aunt and her three children.  So we were happy to have confirmation that my dad has the mutation and he’s an only child.  Plus I now have a photographer for my local FORCE meetings.  Thanks Dad! 

Speaking of local FORCE meetings, I had a web conference with the Outreach Coordinators from all the different areas.  I am so excited to really swing our group into full gear.  FORCE has been around for almost 10 years and is the national non-profit organization devoted to families affected by hereditary breast and ovarian cancer.  In 10 short years, they’ve done so much but there is still so much to be done.  Of the 1,000,000 people affected with hereditary breast and ovarian cancer, only 13,000 people receive communications from FORCE.  Building awareness of this organization is key.  Women need to know that they are not alone and others have walked their same path.  There’s a sense of community and understanding when you visit the FORCE message boards and hear what others have to say.  FORCE also has a deep commitment to actively advocating for increased research and resources specific to breast and ovarian cancer.  This research is critical in finding effective prevention, detection and treatments.  Our next meeting is August 11 from 7:00-8:30 at Troy Beaumont.  If you know of anyone that would like to attend, please pass them the information or have them contact me.  If you know of anyone out-of-state, there are outreach groups in most major markets.  I urge you to share this with your friends and family and remember that knowledge is power. 

By popular demand I need to finish with a brief story.  After my first chemo treatment last October, I had a dystonic reaction to Compazine–an anti-nausea drug.  Fortunately my mom was over at the time.  She was in the midst of organizing my little guy’s closet when I mentioned that it felt like my tongue was swelling.  We quickly got in the car and headed to the ER.  By the time we got to the ER, my mouth was doing crazy stuff twitching all over the place.  After they determined the problem, they gave me an IV of benedryl.  I was doing just fine but my mom didn’t recover so quickly.  Following my next treatment, they gave me Marinol(medical marijuana) instead of Compazine.  The day after that  treatment, my mom came over bright and early.  She looked at my fingers and completely panicked. 

Mom:  “Oh my god, your fingers are orange! What’s wrong?”

I glanced down at my fingers and noticed that they were orange–a residual effect of the cheetohs I had scarfed down for breakfast.  We laughed about that one for awhile.  I continued to take my Marinol, munch on my cheetos and doritos and avoid the ER.

On Saturday, my cousin is coming in town with her daughter.  They came in town last year on August 3rd–less than 24 hours after my breast cancer diagnosis.  Pretty sure we’ll have a much better time this year.

The day they are coming is the one year anniversary of my biopsy.  My biggest concern that day, one year ago, was a late in the day surgery and therefore, no coffee to start my day.  I’m still not a fan of going three quarters of the day without coffee but I’m sure I would handle it much better now.  Oh what breast cancer teaches you!   

On August 2, 2008, my one year anniversary of my diagnosis, my niece Taylor–an absolutely amazing girl–will celebrate her Bat Mitzvah.  And I will be there with her to share in all the happiness.   I am confident breast cancer will be the furthest thing from my mind. 

When I was diagnosed, Taylor was old enough to know about breast cancer.  She couldn’t figure out how her Aunt Ellyn who eats so healthy, exercises, and takes care of herself could get breast cancer.   In my case, genetics played a huge role.  It likely wasn’t a matter of will I get breast cancer; it was a matter of when.  I also know that my healthy living habits must have contributed to my recovery from surgery and chemo treatments.  While I couldn’t prevent cancer, I could speed up my recovery.  Now, more than ever, I understand the importance of taking care of myself. 

But the biggest lesson I’ve learned this past year is not to sweat the small stuff.  So what if I can’t drink coffee?  So what if my kids spill milk all over the floor?  So what if things don’t go exactly as planned?  It really doesn’t matter.  It’s tough to share this lesson with others and really make it meaningful.   For me, it took breast cancer to make me realize what is really worth sweating.  I’m hopeful in 20, 30, 40 years, I’ll remember the lessons I’ve learned.  If not, I can always read my blog to remind me.

My cousin and my brother both forwarded some disturbing press to me this week.  Seems that now the jury is out on whether or not women should do breast self-exams.  They go on to say that they could actually cause more harm–unnecessary biopsies, stress, anxiety, scarring.  Yes.  Many biopsies come back benign–that’s a good thing.  But some, like mine, don’t.  I think the research is pretty wishy washy and actually somewhat ridiculous.  Younger women have dense breasts.   Mammograms do a really mediocre job of finding lumps in dense breasts.  I could feel my lump and the mammogram still saw nothing.  So how can they say that breast self-exams are not necessary?  My message to you is don’t listen to this research.  Continue to do breast self-exams, and if you don’talready do them, start.  If you are unsure of something, get it checked.  Take a look at the St. John Hospital spot, Cancer Opera, that prompted me to find my lump.  It might just motivate you.

I had my 6th bone infusion today–I’m thinking I’ve got some pretty strong bones now.  After today, I go every 3 months for the next 2.5 years.  It’s really pretty easy with no side effects so I don’t mind going.  Today my friend Lori was there getting chemo so we spent some time together which made it more fun.  She wrote a really cute post on her blog about our morning and even included a picture.  I really love Lori’s blog so check it out.  She also posted a link to my friend Pam’s blog.  Both are very entertaining and interesting to read.  I’m sure you will enjoy them too.

People comment to me all the time about how much I am doing about breast cancer–and I know I am but there are so many people out there doing so much.  Maybe this is the case with all diseases but it seems to be more with breast cancer.  I’m guessing it’s because so many of us are affected in our 30s, or even in our 20s, once we beat this disease, we want to make things better for the people that come after us.  I’m going to share some great examples of ones I have come across and if you know of others, please post a comment.  I know it’s comforting to people recently diagnosed and going through treatment to see others out there who have faced the same thing and inevitably come out stronger. 

Early on in my diagnosis, my mom came across the pink fund.  Ironically, I had met Molly MacDonald in a business meeting several years earlier.  From her energy at the time, I wasn’t the least bit surprised that she had gone on to start a truly unique organization.  The pink fund gives short-term financial help to people going through breast cancer simply by visiting a social worker at their hospital.  As a survivor, I proudly where my pink fund hat to show my support for this great organization. 

More recently, I was sent a website from an old college friend.  Her friend, Pamela Schein, also went through breast cancer at a young age and realized that massage therapy during chemotherapy sessions could provide much needed comfort and relief during an uncomfortable time.  After her experience in 2006, she founded the R.E.S.T. Initiative. 

30 years ago, breast cancer network of strength (formerly Y-Me) was founded at a kitchen table by the late Ann Marcou and Mimi Kaplan.  I wrote briefly about this in a earlier post.  These two women wanted to make sure that people do not go through breast cancer alone.  They started a 24 hour, 7 day a week, resource for breast cancer patients; the phones are staffed by survivors.  When you can’t sleep because you are terrified of what lies ahead, how cool to be able to pick up the phone at 2:00 in the morning and talk to a survivor.

I’ve posted often about an organization that is very near to my heart, not only because it touches on my situation, but because it also addresses issues beyond breast cancer.  It’s a powerful organization started by an amazing woman.  While I have yet to meet Sue Friedman in person, I’ve spoken to her and seen what she has to offer.  FORCE (Facing our risk of Cancer Empowered) offers so much to women with cancer and to those affected by the possibility of cancer.  I look forward to dedicating much of my time to helping this organization both locally and nationally.

The last organization I must mention was founded by a truly special young man.  After going through testicular cancer, Johnny Imerman formed Imerman Angels   While he helps breast cancer patients, he also helps other patients.  It is truly amazing to me how many people have been touched by Imerman Angels.  Johnny’s goal is that no one should go through cancer alone.  He matches people with similar cancers and life situations to provide one-on-one support.  It is through Johnny that I met one of the strongest and most positive survivors I know–Teresa Stankoff.  Teresa and I share our passion for helping breast cancer patients, and she is my co-outreach coordinator for our local FORCE outreach group. 

I know there are so many other organizations out there–certainly the bigs ones like Susan G. Komen and American Cancer Society.  If I’ve missed some truly unique small ones that could benefit my readers, please post a comment.  If you have had direct experiences with any of these organizations, I also invite you to post a comment. 

All of these organizations were formed out of a desire of people hoping to make a path a little bit easier for others.  Truly an act of love, kindness and humanity.  We are blessed by those who have come before us to make our lives easier.  So, yes, I’m doing a lot, but certainly no more than others have done.  My life has been touched and enriched by other survivors, and now it is my turn to touch and enrich the lives of others.

This morning I hopped on my treadmill early to get in my training and catch a little of the news before I started my day.  I caught the latest news on breast cancer released from Durham, North Carolina from the Duke Comprehensive Cancer Center and the Duke Institute for Genome Sciences & Policy.  Breast Cancers in women under 40 tend to be more agressive and have a worse prognosis.  This is no secret, and it’s the reason why oncologists treat women under 40 with the most aggressive treatments.  The good news is researchers are beginning to understand why this is the case and thus they are able to develop better and more targeted therapies to treat young women.  Now that’s something to celebrate. 

I caught the story on NBC, ABC and a press release sent from my writer friend.  The story didn’t go to much deeper on the subject but they did address their thoughts on screening and early detection.  For women under 40, clinical and self-breast exams are critical.  After my initial diagnosis, one of my friends found checkyourboobies.org.  I encourage you to visit this site and sign up for monthly email alerts.  I also encourage you to share this with all the women in your life.  Mammograms do not always show cancer because our breasts are much denser than breasts of older women.  I’ll add the importance of knowing your family history including the limitations of your family history like mine–my father was an only child of a mother with 4 brothers.  Few women equates to few breast cancers.  If you do have a family history, I encourage you to check out the FORCE website and/or talk to a genetics counselor.  We do know that early detection is key to survival. 

As I watched these news stories, I increased the speed and incline on my treadmill and hoped that all my training, fundraising and awareness building continues to pay off

Yesterday my 2 year old son was sitting on my lap looking through photos from the year.   Each time we saw a photo of me, my hair was a different length, style or color.  I’d ask him every time who the person was and he immediately responded, “that’s mama”.  When I shifted to the bald photos, his response was consistently “I dunno” even if I was holding him, pictured next to my other two kids or with Jon.  Did he really have no idea who this bald lady was?  Did he block it out of his little 2 year old head?  Although I was completely bald for nearly 5 months of my life, I barely remember it too.  It must of felt like a long time when I was going through it, but now if feels like a nanosecond.  I was fortunate to have a beautiful wig and a half wig(that I wore with hats) when I went out in public.  Although I didn’t love the way either of them felt, it made me feel good to have hair on my head.  If it hadn’t been mid-winter, I may have dashed out completely bald but the wig kept me warm. 

The year before my cancer diagnosis, my daughter donated her hair.  I was thrilled that she wanted to do this but pretty certain she really didn’t comprehend how she was helping someone.  She now completely understands.  During the year of my treatment, one of her good friends donated her hair and was able to have a better understanding of what she was doing.  I also received a very sweet phone call from a friend of mine whos daughter donated her hair and dedicated the donation to me.  I barely knew this little girl yet her thoughtfulness was overwhelming.   If my path can help my children and other children understand the importance of giving, than I have truly accomplished more than a fight against cancer. 

Last week, I ran into a friend of mine who made a truly bold decicision.  She cut her long beautiful curly locks and donated them.  Her hair is shorter than mine and she looks beautiful.  Beautiful inside and out. 

There are so many ways to give–money, time and in this case hair.  We each find our own way and every bit helps.  Everything we do can and will make a difference.

I was doing a little web surfing this morning and found a fun little site. Seems to be a win-win for all. Gotta love those deals. Beewellmiles.com is a great site to track your walking or running miles. They keep your individual miles in addition to a running total. The goal is to reach 1,000,000 miles collectively by September 1, 2008. If they do this, they will donate $200,000 to an organization called breast cancer network of strength formerly y-me. If they don’t reach the 1,000,000 mark, they’ll still make the donation but it won’t be quite as much.

I’m not sure why I’ve never heard of this organization but it seems to be fantastic. They offer a 24/7 phone line staffed by breast cancer survivors. They also offer wig programs and programs for medically underserved. It truly is a support program for women going through breast cancer. So just by logging your miles, beewell will give to this organization.

In addition to logging your miles, you can use the site to develop detailed walking maps. Very fun! They have other tools too but I’ll let you take a look on your own. Hope you’ll join me in walking/running lots of miles to raise money for this organization.