In my last post, I wrote that it had been a long interesting week. On Wednesday, just one day before the start of breast cancer awareness month, I had the opportunity to hear Nancy Brinker speak at the Mothers Daughters Sisters and Friends luncheon benefiting the Francee and Benson Ford Jr. Breast Care and Wellness Center at Henry Ford Hospital. Since I was diagnosed with breast cancer, Nancy Brinker has become one of my personal heros. 27 years ago, she promised her dying sister she would do everything she could to end breast cancer. And apparently when Nancy Brinker sets her mind on something, she doesn’t give up.
Hearing her speak gave me a sense of hope and filled an intense sadness I felt just one day earlier. Susan G. Komen is the organization that has funded the research to keep so many women alive. Susan G. Komen is the organization that changed breast cancer from a deep dark secret to an everyday conversation. And because of Susan G. Komen, during the month of October, we are surrounded by pink to honor and recognize those that continue to fight. I am proud to be involved with this organization and so happy I had the opportunity to hear Nancy in person. What a great way to head into October.
Thank you Nancy for inspiring us, leading us, and never settling for anything less than a world without breast cancer.
It’s been a long interesting week, and I finally have a moment to share. After my diagnosis, I was connected to an acquaintance that had just finished her journey. She became a mentor of sorts—supplying me with cute hats, sending thoughtful cards and calling or emailing to check in on me. She was honest and inspirational all at the same time. We’ve kept in touch over the past two years—because breast cancer and the BRCA gene that we both share create somewhat of an unbreakable bond.
Just days before the Breast Cancer 3-Day, I learned her cancer had spread. The words our mutual friend shared with me twisted my heart, took my breath away and made me feel like I had the biggest kick in the stomach. Two days later, I walked and prayed and kept her in my continuous thoughts. The walk this year had a whole new meaning for me personally. I guess before this news, I lived in my blissful and optimistic world of thinking that those of us diagnosed with early stage breast cancer these days simply needed to do our time, have our surgeries, chemo, etc. and go on to live long healthy lives. While this news shattered that for me, I also felt incredible sadness for her and her family. I know her journey will be a tough one—I also know her incredible strength. On Monday Night, I got an email from her. She was back in the chemo chair as part of a PARP Inhibitor clinical trial. More hopefulness as these are the drugs that are showing the most promising results. She remains part of my daily thoughts and prayers.
About a year ago, I found a blog through my friend Pam. The blog was written by a young woman in Minneapolis raising three young children and battling late stage breast cancer 1 year after her early stage breast cancer diagnosis. I read her blog for several months following her journey. Just minutes after I read my friend’s email on Monday Night, I ventured over to Pam’s blog to learn that Cari had lost her fight. More heartache, sadness and the reality of this dreadful disease came crashing through me.
At the same time, breast cancer awareness month is kicking into high gear. I know there are many questions and potentially even criticisms about the amount of effort and money put into this disease. But we can’t stop. Not even for a minute. Not when stories like this continue every day. Breast Cancer is real and it’s cruel and we have to find a way to stop it in its tracks. It can’t continue to rob children of their mothers, to steal wives from their husbands, to make parents feel the pain from the loss of a far too young daughter. It must go away and until it does, I’ll keep fighting and I hope you’ll keep joining me.
In honor of my 100th blog post, I’ve started a list of 100 things to share about cancer. I actually thought a lot about this list. I didn’t want to bore with you with lots of useless facts. Haven’t found 100 organizations that I love and while I’ve met lots of cool people through my journey, I can’t think of 100 to highlight. This is a combination list and includes really cool organization, some interesting facts and statistics, great doctors, some cool people I’ve met along the way and anything else random I can share with you. I hope you find some of the links and facts within this post helpful. Please note: I am not a doctor–just a survivor involved in the breast cancer world.
I’ll start with really cool organizations. Some I know pretty intimately and some I just know on the surface. Regardless, they are all worth checking out and have some pretty great people involved.
- FORCE – this organization is near and dear to my heart
- Susan G. Komen – I’m guessing most people are pretty familiar with this organization
- The Pink Fund – helps women going through breast cancer with some great financial assistance
- Be Bright Pink – worth looking at this wonderful organization that helps young women with hereditary cancer issues
- Imerman Angels – one of my first connections when I started my journey
- Sky Foundation – nothing to do with breast cancer but started by a really neat woman looking to make a difference
- Ovarian Cancer National Alliance
- Cancer Schmancer – lots of great advocacy from this organization
- American Cancer Society
BRCA and other hereditary cancer facts
- About 10-15% of cancers are hereditary.
- A BRCA mutation can give you up to an 87% lifetime risk of breast cancer.
- Ashkenazi Jews have a 1 in 40 chance of having a BRCA mutation.
- The general population has a 1 in 400 chance of having a BRCA mutation.
- Family history on your father’s side is equally as important as family history on your mother’s side.
- If you have a family history of breast or ovarian cancer, you should talk with a genetic counselor to assess your risk.
- Triple negative breast cancer is common among women with a BRCA 1 mutation.
- Estrogen positive breast cancer is common among women with a BRCA 2 mutation.
- Men with a BRCA 1 mutation have roughly a 6% lifetime risk of breast cancer.
- Men with a BRCA 2 mutation have roughly a 7% lifetime risk of breast cancer.
- Bilateral mastectomy is the best way to avoid breast cancer in women with a BRCA mutation.
Random Breast Cancer facts and tidbits
- Each year 10,000 women under age 40 are diagnosed with breast cancer.
- As of 2008, there are 2.5 million women in the US who have survived breast cancer.
- There will be an estimated 192,000 cases of breast cancer in the United States this year.
- Inflammatory Breast Cancer is very frequently misdiagnosed. See other less common breast cancer symptoms below.
- If you feel a lump, it’s best to have it removed or biopsied rather than waiting and seeing.
- Women under 40 have very dense breasts.
- Abnormalities in breast tissue are difficult to detect through mammograms when women have dense breasts.
- Monthly self breast exams are very important.
- There are many types of breast cancers.
- Breast cancers in women under 40 tend to be more aggressive and have a worse prognosis.
- There are other ways to cut your risks of breast cancer if you are at high risk — like the drug Tamoxifen.
- Susan G. Komen spent 100 million dollars on breast cancer research in 2008.
- Every major advancement in breast cancer research has been touched by a Susan G. Komen grant.
- Women can get breast cancer in their 20s and often these cancers go undiagnosed.
- Doctors can test lymph nodes for cancer by first doing a sentinal node biopsy.
There are lots of other breast cancer symptoms other than a lump
- Swelling of all or part of your breast
- Skin irritation or dimpling
- Breast pain
- Nipple pain or nipple turning inward
- Redness, scaliness or thickening of your nipple or breast skin
- Nipple discharge
- Lump in your underarm
- Immediate reconstruction with tissue expanders
- DIEP Flap
- One Step
- Nipple Sparing
- Lat Flap
Really cool people I’ve met through my breast cancer experience
- Lori Buckfire – check out a hilarious blog from a very inspiring person
- Pam Lucken – a survivor I met after she was diagnosed, now a good friend
- Patti Nemer – knows everyone in the Michigan Breast Cancer community
- Valerie Fraser – Inflammatory Breast Cancer Survivor and big advocate in the breast cancer community
- Jonny Imerman – testicular cancer survivor and founder of Imerman’s Angels
- Missy Mazorati-Bergman – another wonderful breast cancer survivor who walked around with the boldest bald head ever for 6 months
- Laurie Alpers – survivor friend who got very involved with FORCE early on and now walks with me on Ta Ta Breast Cancer
- Whitney Ducaine – my genetics counselor who helped me start the first Southeast Michigan outreach group for FORCE
- Lindsay Avner – founder of Be Bright Pink
- Sue Friedman – Executive Director and Founder of FORCE
- Joanna Rudnick – Producer of documentary In the Family
- The women of Ta Ta Breast Cancer — both my new friends and old friends
- The walkers, crew and staff of the Breast Cancer 3-Day who devote so much to finding a cure for this disease
- My new FORCE family including all the wonderful genetics counselors in Southeast Michigan
- The women and men I met at the FORCE conference in Orlando
- Lots of really inspiring advocates I met at the Susan G. Komen Advocate Training
- The women battling cancer everyday and reminding me why I need to keep fighting
Fun websites to buy cancer gear
- Dr. Alvin Schoenberger – greatest OBGYN ever who was very aggressive in making sure we took action with my lump
- Dr. Jeffrey Margolis – brilliant Oncologist who treated me
- Dr. Daniel Sherbert – super nice and extremely talented Plastic Surgeon
- Dr. William Kestenberg – performed my biopsy, results on Thursday night, scheduled all my tests throughout the weekend so I didn’t have to wait the weekend to learn that the cancer had not spread
- Dr. Scott Schell – my breast surgeon
- Dr. Ruth Lerman – follows me for yearly breast exams, also a breast cancer survivor
- Dr. Dana Zakalik – Oncologist very involved in cancer genetics and helped start our local FORCE group
- Dr. Laura Freedman – Radiation Oncologist and personal friend who was always willing to talk to me
- Dr. Melissa Davidson – my trusted sister-in-law also a physician who reviewed my pathology report and all my test results and spent lots of time helping me navigate
- Dr. Scott Davidson – my brother-in-law who spent lots of time on the phone with me following my diagnosis and during my treatment
Easy ways to raise money
- No need to plan an elaborate black tie dinner, a backyard party with all the food donated and an auction can generate lots of good income without requiring a big donation.
- Promote your favorite places and ask them to make a donation in return. TD nails has donated several hundred dollars to the Breast Cancer 3-Day just by having people mention Ta Ta Breast Cancer.
- Have a bar night — we promoted our 24 Seconds fundraiser via Facebook and a small amount of email and raised over $1,000 without any out of pocket cost
- Theater nights — we promote and buy as many tickets as we need — raised over $3,000 for Annie
Some Great Books
- Why I wore lipstick to My Mastectomy
- In the Family
As I was developing this list, I realized that I have a ton of great people reading my blog who could provide some additional input into my list of 100 so I’ve left room in the list–I have about 10 left. Any organizations you love, doctors you trust, must-read books, new things you’ve learned, tidbits that we can all share. The more we can help eachother out, the better we can fight. So go ahead and post a comment, help me complete my list of 100.
Additions to the list
Thanks Molly, Patty, Kim, Laurie and Alyssa for adding some great sites and tips to check out by posting a comment. Keep em coming….
- Sister’s Hope – Recommended by the Pink Fund
- eraceibc.com – A site devoted to Inflammatory Breast Cancer
- Unbeatable – a musical about breast cancer. I need to know when they are coming to Detroit. Looks pretty darn funny. Check out the description I pulled from their website and the very cute image.
UNBEATABLE! juxtaposes the gravity of a cancer diagnosis with optimism, hopefulness and a keen sense of humor. The message of UNBEATABLE! is universal and applies to anyone who goes through life at full speed, without realizing that in the end, it is the people we love in our lives, not the “to do” lists, that deserve our time and attention.
- Dr. Julio Sosa – Plastic Surgeon
- Shades of Pink Foundation – non-profit to help women with financial issues after a breast cancer diagnosis
- Dr. Pamela Benitiz – Breast Surgeon
Another suggestion from a trusted source…
Dr. Gail Parker – therapist in Southeast Michigan available to provide support to people with BRCA Mutations
If you are considering walking with us next year, check out this video for some inspiration. I found it on YouTube. I love that they caught the Ta Ta Breast Cancer cheering section pretty close to the beginning(notice the little guy in the Tie-Dye and the man in the pink shirt on the phone) I also love that they caught my reunion with my daughter who was at overnight camp for four weeks before the walk. Enjoy the video–it’s just a little taste of what the Breast Cancer 3-Day is all about.
Since we got back from the walk, I’ve had lots of people tell me they are walking 2010 and our team is up to 5 members in the past week. I love my friend Pam’s post “Why you should seriously consider walking the 3-Day”. She does such a great job of summing it up and I couldn’t agree more. Pam and I met when she was diagnosed with breast cancer 6 months after me. We’ve been friends ever since and although we don’t see each other often; the breast cancer bond has formed a unique friendship. Our other breast cancer friend, Missy is also part of Pam’s team. In Pam’s blog, she mentions that Nancy’s Naughty Nockers (NNN) now changed to No More Naughty Nockers has raised over $200,000 in three years—that’s a ton of money in this fight. I am also proud to say that Ta Ta Breast Cancer has raised $160,000 in two years.
In 2010, we’ve formed another goal. NNN and Ta Ta Breast Cancer, while remaining separate teams, are forming a bit of strategic alliance orchestrated by Pam’s husband Bill and me. We’ve decided that the two teams together are going to raise $250,000 in 2010. We’ll support and help promote each other’s fundraisers. So come on, enough waiting, join the 3-Day and let’s start working towards this unbelievable goal. If you join now, you can save $35 by entering POWER10 in the coupon code area. We can’t wait to see you at the 2010 walk.
Others, I met during training walks. Some were acquaintances prior to the walk. And some others are the people nearest and dearest to me—my mom, my aunt, my sister-in-law and some of my best and oldest friends. Sharing this experience together takes all of these relationships to a much deeper level.
If you have ever thought of walking the Breast Cancer 3-Day (now called the Susan G. Komen 3-Day for the cure) but just didn’t think you could do it, trust me, you can. If you live in Michigan, join us next year. If you are in another state, grab some friends and don’t wait another day to sign up. If you can’t walk, crew or volunteer. You will thank me later.
We have to do this for so many reasons. But I think 5-year old Samantha Dubin summed it up so well when she returned from a cheering section and said to her brother Josh.
“The women are walking now, so they will save my boobs later.”
Today is exactly two years since my breast cancer diagnosis. Looking back, it’s hard to believe how much my world would change with one phone call.
I will never forget that first night. It feels like a lifetime ago, yet I remember so many details of the night. I remember exactly where I was standing in my closet as Dr. Kestenberg told me they found cancer. I remember telling my mom they found cancer and hearing a voice I’d never heard before (and one I hope to never hear again). I remember calling my good friend who was anxiously awaiting my phone call with the results of my biopsy. I remember trying to figure out if I was in the midst of a bad dream. And I remember thinking that maybe, just maybe, they were wrong. Despite all these vivid memories—surgeries, treatment and life without hair feels like a lifetime ago. And that’s a great feeling.
So today on my two year anniversary, I invite you to share a virtual toast with me. A toast to survivorship, a toast to cures and a toast to a world without breast cancer.
Last night, I was lying in bed with my 7 year old and remembering a very similar night almost 2 years ago—the night I was diagnosed. It prompted a discussion about my experience. I’ve wanted to talk to him for awhile to make sure he is not afraid—I’ve had little indications that he still thinks a lot about my experience. It’s not entirely surprising since we certainly didn’t sweep my experience under the rug. It’s become a big part of who I am and the activities we do as a family—fundraisers, walks, cheering at the 3-Day. Right now he is making an art book to sell to raise money for cancer.
The conversation was so interesting and his questions were so insightful. I almost forgot I was talking to a 7 year old. And I was reminded that he doesn’t forget anything. He wanted to know why there was one survivor at the 3-Day in a wheelchair and what happened to her. I explained that they didn’t find her cancer early enough and it had spread to other parts of her body. I also talked about how important it is to find new and better medicines to treat cancer when it’s spread. I told him that’s a big reason why we work to raise money. From there, he wanted to know how you find cancer. Can they see it in your pee he asked? So I talked a bit about my lump and how I initially felt the lump. He also asked how they knew it was cancer and I was able to tell him how they looked at the cells very carefully. I was amazed at his comprehension and interest in the little details. I know he loves science and he seemed fascinated by everything. I even explained why I went to Dallas last week and learned how to look at proposals for research. He said, “You mean the research that doctors and scientists do?” He totally gets it, and he didn’t seem afraid.
I’m more confident that he talks about cancer because he is interested and not because he is scared. I hope he sees cancer the way I do as something we need to conquer and not something we need to fear. I’ve learned that fear is not helpful but action is, and I hope in little ways this cancer experience has taught my children the same lesson.
I’ve posted before about the importance of the EARLY Act. FORCE is submitting a wonderful letter showing their support and I urge you to add your name to the letter. Feel free to read the full letter or some of my other breast cancer posts on this topic to understand the importance of the EARLY Act. If you would like your name added to the letter, just email email@example.com and type EARLY in the subject line.
Thank you again for all your support!
I’ve been so busy in Dallas, I neglected to post a blog about our fundraiser Saturday Night. Huge success—lots of people, lots of fun and great weather. And we raised almost $3,000. Not too much else to say except enjoy the pictures and thank you everyone for your support! Now on to the walk which by the way starts one month from today (actually yesterday by the time I get this blog posted).