Friday, February 10, 2012

I Stand With Susan G. Komen

Many of my friends, family, and blog readers have approached me over this past week because anyone who knows me knows I am in love with the work of Susan G. Komen for the Cure; I am a walker, a survivor, and a 3-Day Coach. Last week, when the news broke that Komen for the Cure decided to cease future funding of Planned Parenthood, thousands of women and men hit the internet to object. I will not revisit last week’s media firestorm. Plenty of people have already done more than enough recapping of every twist and turn.

Instead, I will share the reasons why I continue to support Susan G. Komen for the Cure. I will include links to absolutely everything I mention, so that anyone interested in learning more can learn more, and can do so by going directly to the source.

Deb
When I was first diagnosed with Stage IV breast cancer in 2005, I went to events put on by various other breast cancer organizations. At those events, I was surrounded by women with gray hair and grandchildren. I came home in tears, and felt so much older than 21 years old. Other organizations left me, a young cancer survivor, feeling so very much alone.

Deb, a 30-something breast cancer survivor, changed all that for me. It wasn’t until Deb, a spunky little gal with flowing brunette hair, a sweet Southern drawl, and two little boys, stopped by my chemo chair one day that I finally realized I wasn’t alone at all. You see, Deb stopped by chemo to drop off literature about her support group called Breast Friends, a support group funded in part by Susan G. Komen’s Maryland Affiliate. Breast Friends was a support group for women under 40 who had been diagnosed with breast cancer. At the time, I didn’t even know there were other women under 40 with breast cancer, and this same wonderful Deb didn’t just offer support. She also offered education. Deb was the first to say, “Bridget, you should tell your story. You should go to schools and tell your story. You could save some lives.” So, you see, Komen gave me support and Komen gave me a voice.

Ann
Komen’s impact on my journey didn’t stop there. In the past six years, I have seen 10 different doctors about this cancer, and, while every doctor saw my concerns about having babies and getting married as understandable concerns for someone in her 20s, no doctor actually took those concerns to heart. No doctor, that is, until Dr. Ann Partridge at Dana Farber Cancer Institute. Dr. Partridge, or “The Boss” as she is known around my house, never told me to “worry about that later.” Instead, she helped me take action to preserve my fertility. She offered to plan my chemotherapy around my wedding and honeymoon. She offered me a chemotherapy drug that wouldn’t cause hair loss, so that I’d look my best when I walked down the aisle. She even offered to answer any questions my soon-to-be husband might have about my cancer before the Big Day. Now that’s a doctor! Dr. Partridge is the kind of doctor who thinks about the well being of the patient and the well being of the caregiver.

I am proud to say that Dr. Ann Partridge’s Young Women’s Program was funded by a three-year $1.35 million Susan G. Komen for the Cure grant. Not only that, but in addition to providing this program to lucky Dana Farber patients, this Komen grant allows “The Boss” to implement her Young Women’s Program in hospitals across the country, so that every young woman can get the same stellar, personalized care I’ve received regardless of where she happens to live.
 
So, as you see, I was supported by Komen, I was empowered by Komen, and I was cared for by Komen. But, have I been cured by Komen?


The Cure
I can honestly say: I wouldn’t be alive today if it weren’t for the research of Susan G. Komen for the Cure.

I have been on 15 different drugs during my six year battle, and every single one has been touched by a Komen for the Cure grant, including Herceptin. Herceptin is a drug that targets my particular type of breast cancer and, in clinical trials, Herceptin has been found to reduce the risk of relapse by almost 50%. Herceptin has been the one constant in my dozens of “chemo cocktails.” Herceptin is in my current cocktail; it’s being used in combination with my friend Taxol. Herceptin is not a cure, but Herceptin is keeping me alive, and Komen gave me Herceptin.

But that’s the past. What about the future? Well, I can tell you that currently, Komen is funding 572 research projects totaling more than $300 million worldwide. In 2009, “The Boss” referred me to a clinical trial led by Dr.Leisha Emens at Johns Hopkins University. Dr. Emens is developing a vaccine that teaches a patient’s immune system to fight her breast cancer on its own, and the trial is having some fantastic results. While I was unable to get the vaccine because my cancer began progressing unexpectedly, I believe this vaccine idea could truly be the future of breast cancer care. Dr.Emens’ trial was funded in 2006 by a $300,000 Komen grant. To learn more about the other exciting clinical research that Susan G. Komen funded last year alone, click here.

I Will Walk
Last Wednesday, when this news first started breaking in the media, I was at the hospital getting chemotherapy. I thought that was pretty ironic…my afternoon was about to get even more ironic! That afternoon in the hospital actually helped me deal with the onslaught of unsettling news stories. Last Wednesday, during a routine blood draw, I found out that the tumor markers in my blood had increased from 75 to 99, a preliminary sign that my chemotherapy regimen might no longer be working. When the whole world began debating and questioning Susan G. Komen’s work, my cancer turned out to be a gift. I needed a reminder, and this news was a poignant reminder. I was able to see that, for me personally, the news about Susan G. Komen mattered, but it didn’t matter enough to sway me from the heart of why I walk.

So what did I do after I learned that my tumor markers rose from 75 to 99 last week? How did I cope with the news? I registered to walk in the 2012 Susan G. Komen Washington, DC 3-Day.

I walk because I have to go to chemotherapy every week, and I don’t want anyone else to have to live that life. I walk because I live with the heavy burdens of fear and doubt every day, like the fear and doubt piercing my heart tonight as I think of my rising tumor markers. I walk because I know that over the past 6 years I have been on 15 different drugs, and all 15 of them were touched by a Susan G. Komen grant. I walk because, while there are other charities out there, no one comes close to funding research the same way Komen does.  I walk because this cause is too important to walk away. I walk because today someone is going to die from breast cancer, and I walk because I don’t want to die from breast cancer.
  
No other organization has had my back like Komen for the Cure, and now it’s time for me to return the favor. Together, we will move past this. I believe we have already started moving, and I believe we are moving forward. I believe we will come out of this better, wiser, and stronger than before.

I hope each of you will be walking beside me this October, but I understand if that’s not the case, and I respect and support that. I wish all of you all the best. You are important to me, and I thank you for your service to this event and to the fight for a better world.

43 comments:

Patty Mellon said...

No words can express how much I love and respect you. Keep fighting girl - you have an army behind you!!!!!

Love and Blessings!
Patty

Patty said...

As always, you inspire and motivate. Bridget's Big Girl Pants Brigade will be walking in Boston for you. All of us who have been touched by this disease will continue the fight. Thank you for all that you do and all that you are. Amazing doesn't even begin to cover it. Sending love.

Steffy said...

Thank you! I shared your post and agree with you wholeheartedly. I also walk because it gives me reasons to walk and train and keep my old body in a little better shape. I walked in DC last year and am walking San Diego this year. You go, girl!!!!!
Blessings!

Carole Sanek said...

You are a beautiful woman, inside and outside with a heart of gold and the spirit of one who "get's it". I get it. I wouldn't be alive today if it had not been for all the work SGK has done. I will walk in Boston this year and you will be in my heart.

Love,

Carole

Anonymous said...

Bridget- I was truly inspired by your story when I went to my first get started meeting. Every time I read your blog I feel motivated and inspired, you are an incredible woman. I will be walking DC as well this year in support for my mother-in-law and for people like you that continue to touch my heart.
Brooke

Angie Lail, NC said...

Thanks so much for your story! I also continue to support Komen. I'm blessed to be a two-time b.c. survivor. You are in my prayers!

kimberley said...

Thank you, thank you, thank you! I have been on the fence since the "news broke"...
Last summer I walked my 4th 3day in Boston, my first as a survivor. I will never forget what all those walkers meant to me... And I will be lacing up again in July.
Again thank you
Blessings
Kim

Jacqueline said...

Bridget - It is for people like you that I fundraise and walk in the 3-Day event in Seattle! It is for people like you that I will CONTINUE to support Susan G. Komen for the Cure. Keep up your positive attitude and fight hard! We are all behind you!

Eric Kalgren said...

I was truly touched by your story and I wish you the best. I can see from your pictures that you are beautiful and I heard your strength in your story. Your husband is a lucky guy!
My sisters and I are walking in Boston this summer and you can rest assured that will be doing our level best to live up to your example.

mama2girls said...

Bridget,
I am commenting here while wiping tears from my eyes. I am registered as crew for the 3rd year in a row with the DC 3-Day. Your blog post was wonderful. Heartfelt and so important! This October, I hope to meet you on the walk! I will be working pit stop 3!
Jenni

Sharon said...

Thanks for saying so eloquently what many of us survivors are thinking about Komen. You will be in my thoughts and prayers.

Suz said...

Someone shared your blog on facebook today, and I have to say you have moved me to tears. I, too, have had a lot of questions about SGK this week, and your words are on point. Thank you for being brave enough to post them. Keep on fightin'! Prayers are being said for you and your family!!

Julia O said...

Thanks for sharing your story! I wish you continued success and strength in your journey! You're an inspiration to all of us who will continue to walk until there is a cure!!

Anonymous said...

You will be in my thoughts when i walk my first 3-day this year in seattle. I was lucky enough to start on the taxol/Herceptin cocktail in 2006 and am happy to say it is working so far. I am also participating in the Vaccine trial you talked about. Hopefully it will be available soon. You are an inspiration and a stong young lady, thanks for using your voice to get the words out there. Sending hugs, thoughts and prayers for your continued healing. Pam

Anonymous said...

I think we all needed this Bridget. We will continue to walk - I promise you that.

Anonymous said...

I am one of the lucky women who so far have not had to fight the battle you have had to fight. I walk because I believe we MUST continue to fund the search for a cure! Breast Cancer does not care about politics. Breast Cancer does not care about beliefs or religious mandates. I walk because I must walk and do my part to fight Breast Cancer. Thank you to Susan G. Komen for giving us the tools to fund the fight to eradicate Breast Cancer.
Sending healthy thoughts your way.
Sue

Karen Russo said...

I will walk, also, in Oct, in St. Pete, FL. I will walk because St. Anthony's Hospital MISSED the lump on the mammogram AND ultrasound in June 2011. The only reason I'll live the rest of the year & hopefully beyond is because I felt another symptom in November 2011 in the same breast with the cancer, all the while NOT knowing I had cancer!!!!!! I got paranoid about the symptom & went to a breast surgeon who took a needle biopsy - diagnosed with Stage I invasive ductile carcinoma. Had a partial mastectomy in Jan & will complete radiation in April. If it weren't for Susan G Komen, I would NOT have given that symptom a SECOND thought!

Dana said...

Bridget,
I had the pleasure of hearing you speak this morning at the "Get started" meeting in Wakefield. The grace,selflessness, and bravery you exude is SO inspirational.
As per your request, I was able to add another $100 in donations today. You promised us a hug for this, and I will be looking for you in July to "collect".
Much love & thanks for being you.
XO Dana Fagerquist "TWP"

Anonymous said...

My 72 year old wife will be doing her 9th walk in Phoenix this year because we have 5 daughters and 7 grandaughters and 2 great grandaughters whom we never want to experience what you are going thru. I put your story on her Facebook fundraising page today, what a great inspiration and reason for everyone to continue walking till we can all dance.

Amanda Bond said...

I will be walking in Atlanta Ga for my first walk. I am walking in the memory of my sister-in-law. She passed away 7 years ago. I was with her when she found out she had cancer and 4 years later I was with her when she took her last breath. I walk for all the ones that are fighting and I am walking for the ones that have passed away. I have a 6 year old little girl and my prayer is when she gets grown for breast cancer to be a thing of the past. Praying for you hold strong.

Pinkim said...

Hey Bridget...As a Komen Advocate and MD Survivor Chair, I cannot thank you enough for sharing your feelings...I am so there with you! Kim

Shannon said...

Bridget, thank you so much for your post! In light of everything that has happened over the past week, many people have forgotten all of the great things Komen has done and will continue to do! Your story is a testament to that. I'll be walking in DC this year and hope I have the honor to meet you. Sending prayers of health your way!

Anonymous said...

Hi Bridget,

I have been on Herceptin for almost four years. I am truly grateful that Komen has supported you, but I do believe funding for Herceptin came from the Revlon Foundation (Perelman) and Lily Tartikoff, not Komen. I did not find references to Komen being the funding source. The original grant came from the Department of Defense (how did that happen?) and when funding ran out, I believe funding came from these two other foundations. Herceptin has definitely saved my life. Did Komen fund it?

Anonymous said...

Bridget, Deb was a lifeline for me too! We were diagnosed a few days apart and I met her on the ysc boards. I asked her to call me. Just something she wrote made we want to speak with her.
She called, we met in Philly at the 2002 YSC conference and now have been friends for 10 years! love her!!
Kristi Collins

Paula said...

I read your story through facebook and am reposting your blog through my own. Stop by and say hello if you'd like, it's my first 3 Day! I'm walking in honor of my co-worker. http://moretrunkthantwig.wordpress.com

Abby said...

Thank you for this post, Bridget! I was led to it from facebook. Your perspective reminds us all why we walk and support SGK. I will walk my second 3-day in Boston this year! I shared a link to your post on my blog to spread this great message to even more. God bless!
-Abby

Bridget said...

First off, I am loving all of this love on my blog! Last week, I felt very alone and helpless in my fight against cancer. I worried I might be the only walker left on the 3-Day fighting for a cure. I can sleep soundly this weekend knowing that I am not alone in my struggle. Thank You, friends!

To The Anonymous Reader who continues to question Komen's impact:

First off, it is not at all uncommon to have the Department of Defense fund clinical trials, in fact, the National Institutes of Health was first founded by the DOD and the DOD helped declare the "War on Cancer" of the 60s and 70s. For more detailed info about how clinical research is funded I recommend the fantastic book "The Emperor of Maladies: A Biography of Cancer."

As far as your questions about funding Herceptin: I was unable to include a link because the documentation I have is a PDF entitled "Fast Facts: Her2+ breast cancer" and isn't a website. I don't yet know how to upload documents to my blog, so I'm sorry I can't link to it. To briefly summarize the document:

Susan G. Komen has had a huge part, not in that one particular clinical trial that you mention, but in other important Herceptin research. Komen for the Cure has funded 109 grants totaling $41,263,715 for Her2 Research. The first such Komen grant was awarded in 1992 to Dr. Edison Liu to investigate the role of Her2 gene amplification in breast cancer progression.

Komen's investigation into Her2+ breast cancer continues today with three exciting Komen Promise Grants:

- Researchers at University of Texas and University of Kansas are looking at the preventative effects of an active compound found in flax seed on ER-, HER2+ breast cancers

- Researchers at MD Anderson and at Duke are investigating the role of HER2 signaling in pre-cancerous cells in the hopes of developing prevention strategies for HER2+ breast cancer.

- University of California Researchers are studying how HER3, another protein in the HER family, interacts with HER2 and whether HER3 promotes cancer growth.

Whew! I'm taking off my doctor hat now! Again, I'm sorry I can't just link to the document! If you would like it, email me at mybiggirlpants@gmail.com and I can email it along to you.

Lee Cramer said...

I am a two time cancer survivor who will be 80 years old this summer. In 1975 I discovered a lump in my left breast and had a mammogram which produced a questionable result. Doctors in Pittsburgh, PA sent me to Sloan Kettering in NYC where I had a super radical masectomy (removal of lump, all breast tissue and surrounding muscles, all lymph nodes under arm and chest which required opening my chest and removing two ribs) I was 43 years old (not as young as you, Bridget) with four children. The research which has taken place in the intervening time, much of it sponsored by Komen, has made such extreme surgery unnecessary today. In 2010, however, cancer reappeared in my left breast for which I underwent a lumpectomy. I'm still going strong with six grandchildren. My message is one of thanks for the many groups, physicians and volunteers who work tirelessly to rid the world of cancer in all its forms. Good luck to you and all others who are engaged in this battle. We women are never too young or two old to be part of it.

Anonymous said...

I think this perfectly sums up all the amazing things Susan G Komen does and why I contine to support it and will be walking in my second 3-day walk this summer. Your always in my thoughts and prayers! Thank you for sharing your story!

Brittany

lori said...

I got introduced to your blog because of a fellow 3-day walker. My sister is 32 and is currently fighting Stage 4 breast Cancer as well, and it's nice to get a different perspective. I will be walking in support of my sister in the Cleveland Walk- We all need to stick together and fight this. I monday I reached my fundraising goal which was really exciting for me! Keep fighting! We are all behind you!
Lori

Jenn from WA said...

Well put! I battled in FB over the "disgust" so many felt. I fought every day, tirelessly explaining to people why this decision shouldn't stop them from donating. Then I had to battle the same folks because they recanted. I, like you, see Komen for ALL That they do. Even if their decision was political, or misguided, I was able to support an organization that I've seen support so many in their times of need. I couldn't fathom walking away over something so insignificant in my eyes (and I'm a PP supporter). Your journey has certainly been touched by SGK and I love hearing that ... it makes me understand again just how important this is. You are a gem ...

kjl said...

Thank you so much for sharing, Bridget. You are so amazing and so amazingly eloquent, and I will share your story with any naysayers who give me a hard time about continuing to support SGK. I'll be walking in my 7th 3-Day this year, because for me, the option of doing nothing is not an option.

Mila-Alberto said...

I am amazed and emotional after reading your post. I was diagnosed with breast cancer June 2011 and I am also walking this year 3 day San Francisco with a big group of friends.
I really appreciate the post and I will share it in my blog if it is ok with you.
Keep it strong, you are a beautiful person and a strong fighter.
Love
Mila

Bridget said...

Mila, please do share my blog! Let's get the good word out to counteract all the negativity out there! Thank you for reading and for sharing!

Dena Gikley said...

Bridget, this is such an amazing post. Thank you for sharing! The one thing that has gotten me through my diagnosis and treatment has been all the amazing women I've met along the way. And like you, I owe so much to Susan G. Komen. This is a beautiful tribute. I also wanted to share a link that I relied on a lot when I was grappling with what it means to have cancer http://onlineceucredit.com/edu/social-work-ceus-can I hope your message will remind women that they are not alone in this! Together, we will beat this.

Rosie said...

You are an amzing woman, and I will walk proudly with you in DC in October. Thank you for stating the facts so well, and sharing your story. Rosie Law

Anonymous said...

I haven't done a 3 Day since 2008 and you just made me want to sign up for another one. THANK YOU for a different perspective on Komen. Your words were so poignant and I appreciate them more than you can imagine. Blessings to you in your journey and fight ~ don't ever stop walking!!

Unknown said...

I wrote that last post and didn't mean to be anonymous ~ I clicked the wrong button! :)

tonimonigirl said...

My sweet little Bridget, I was sitting in the front row, on the right side of the stage, when you spoke this past Friday morning at the Komen Leadership Conference in Fort Worth, TX.

Words cannot even express the immediate love I felt for you as you told your story. You are an AMAZING young lady, and I will carry you and your story with me in my heart forever.

Thanks for "standing" proudly with Komen, and sharing your story so that more people will realize the wonderful strides that have been made due to funding by Komen, and the lives that have been positively affected due to drugs funded by Komen.

Keep hoping, fighting, and living a wonderful life with the Big Man. May God bless you and wrap His loving arms around you as you continue to win this battle. Yes, that's my prayer for you...that you continue to win!

Love Always,

Toni - one of your 2.5 million sisters! We are Survivors!!!!

Jenn said...

Thank you so much for sharing your story with all of us at the Komen Leadership Conference. You are amazing!!

Bob Williams said...

Bridget,

I didn't get you meet you at the Komen Leadership Conference last weekend, but I do very much want to thank your for your thoughtful and inspirational comments.

Know that you are in our thoughts and prayers.

Bob Williams
Roanoke, VA

Devon Noelle said...

Thanks so much, Bridget. I work for the Oregon and SW Washington Affiliate of Susan G. Komen for the Cure; your remarks at the Affiliate Conference were inspiring to our entire staff. I shared the youtube link to your words on our Facebook page (www.facebook.com/komenoregon) so that all our supporters can know your story. Thank you for your courage and willingness to share about your journey!

Anonymous said...

I don't think it's insignificant that Komen's goal of limiting abortion by defunding PP was misguided, wrong, and not in line with their goal of helping women with early detection. I also think Komen would be more legitimate if they used more of the money they receive for actual research grants. 15% in 2011. 17% in 2010 and 2009. They are the largest organization, so yes, they have done good things. But there are other organizations that use a greater percentage of money towards research and those of us who believe in a woman's right to choose will be supporting them from now on. It really shouldn't matter which organization you support, Komen is not the only game in town, they are simply the largest and most well known.

ALTERNATIVES TO KOMEN:

For a full listing check out Charity Watch:
http://www.charitywatch.org/toprated.html#cancer

Planned Parenthood
https://secure.ppaction.org/site/SPageServer?pagename=pp_ppol_Nondirected_OneTimeGift

Breast Cancer Research Foundation
http://www.bcrfcure.org/

Avon Foundation Breast Centre
http://www.hopkinsmedicine.org/avon_foundation_breast_center/make_a_gift.html

Breast Cancer Action (vocally opposed to Komen's cutting funding to PP)
https://org2.democracyinaction.org/o/6098/content_item/donatenow

Memorial Sloan-Kettering Cancer Center - http://www.mskcc.org/giving

The University of Texas, M.D. Anderson Cancer Center - http://www.mdanderson.org/how-you-can-help/index.html

Dana-Farber Cancer Institute - http://www.dana-farber.org/

That being said, YOU are an inspiration. And the fact that Komen has inspired you to inspire other women is a gift that I am glad you are sharing.