Dear President Obama:

Thank you for your support of the fight against breast cancer.  By turning the White House pink last week and issuing a proclamation October 1, you joined so many in America (and the previous administration) wishing us well, thanking our caregivers, and approving of the research that gives us hope.  I’m sure it was beautiful.

I didn’t see the pink White House, because while you and your staff were lighting your house pink, I was just a few miles up the road, explaining to my little boys that Mommy was too tired to play after dinner because the chemotherapy I take is fighting the cancer cells spread throughout my body.  That I couldn’t pick them up from school because the chemo takes so much energy that I had to nap instead.  That I was fighting as hard as I could, and that it would get better, but for now, Mommy had to rest.  Because Mommy has cancer. 

I’m a three-time survivor of breast cancers that don’t get a lot of attention, even during breast cancer awareness month.  Despite all the pink saturating our government buildings, the grocery store, and the pharmacy, there is still very little research on inflammatory breast cancer, the most aggressive of the breast cancers, and the one I’ve gotten twice in three years.  My hope for a cure lies not in the giant breast cancer organizations, but in the rare research grant that could bring a breakthrough in this terribly fast-moving cancer that will surely kill me before I have the chance to see my children go to middle school.

I’m lucky in many ways.  Had I been diagnosed with inflammatory breast cancer thirty years ago, I wouldn’t have seen my children go to kindergarten, because 98% of women with IBC then did not survive five years, and my youngest was only a baby when I found out that I had the disease.

I’m here today because of research.  But I’m also here today asking for your help for more funding for research for inflammatory breast cancer and for all cancers.  One in eight Americans will get cancer in their lifetime, and nearly all of us have been personally touched by this awful disease. 

Touched is an understatement.  Where just five years ago, I was a vibrant young mom, a NASA scientist, with my whole world at my fingertips, now I am too weak to travel.  Too weak to help my children at the playground.  Too weak to go to the grocery store, and too weak for date night with my husband.  I spend my days in bed or working at my desk, trying to eke out a life while the cancer and the chemo ravage my body, steal my energy, take away my hunger, and make me tired in my bones. 

Cancer is not pretty.  It’s not pink.  And it doesn’t really care about all the games being played in its name during breast cancer awareness month.  Cancer is a deadly, bloody, life-taking disease that has killed too many of my friends and is trying to kill me as well. 

I’m doing everything I can to fight this disease, with my medications, with physical therapy, with donations to research, and with my words as I tell my story so that others can understand what it’s really like inside breast cancer.   

Are you?

Or is changing the light bulbs the most that this White House can do to fight cancer?

31 Responses to Dear President Obama:

  1. jodifur says:

    I wish there was something I could say other than, like always, this post is amazing, and it is a privilege to know you and to call you my friend.

  2. Yes, yes, and yes. Can I copy this letter a million times and send them over to Pennsylvania Ave for you?

    Well written, as always, and well said, my friend. All this pink is fine, but the reality is that it’s time to turn all this *pink* to *green* and finally find a cure.

    xoxoxo

    • whymommy says:

      Thanks, friends. I’m going to nap now, but when I get up I may put it on paper and send it downtown. I’ve never done anything like this before, but at this point? I’m just so frustrated. There are only a handful of research grants in all of America trying to understand inflammatory breast cancer. . . . like all rare cancers, it gets overlooked in the rush to pink. The truth is, we need more research into all cancers, and more understanding of this thing we call “cancer” on the molecular level.

  3. Lisa says:

    Susan, you post was right on target. I have been banging my head wondering why our administration has not made cancer research a higher priority. Two weeks ago when I received a questionaire from the DNC, I took the time to sit down and write, more than the recession, more than the war in Afganistan, we need to focus on finding a cure. I hope you mailed and emailed a copy of your letter to Obama. Thank you for continuing to be a brave and poignant voice for all those suffering from this horrific disease. I continue to lift you and your family up in prayer. You are truly an inspiration. Like thousands of others, I am here if you need anything. Your new friend in Atlanta, Lisa

  4. *m* says:

    Oh, Susan. As usual, your words are moving, powerful and right on the money.

    I say send it, and cc: Michelle Obama.

    Hugs to you.

  5. Frances says:

    I hope you really have sent this. It’s awesome. Thank you Susan, my prayers and thoughts are always with you.

  6. PrincessJenn says:

    “Cancer is not pretty. It’s not pink.”

    Indeed. How many of us think that putting a little ribbon somewhere is doing something to help? You’re right. We need to start doing things that really matter, to help bring about a cure.

  7. Missy says:

    What a beautiful post. I think more of these need to be written by people that are truly affected by breast cancer.

    Is it okay if I link to this post in my blog?

  8. Linda Lawrence says:

    Yes, send it to Pennsylvania Avenue!! Yes, then send it to the newspapers. It is a message to be heard. We need to do more than wear pink.

  9. Tracie says:

    Very powerful truth you have written here.

    I hope that your letter is received and that it wakes people up to the reality of cancer and the research funding that is needed.

  10. I hope he hears you. I think a copy should be sent to Michelle as well.

  11. Cassandra says:

    Well said, Susan! I am a breast cancer survivor and my life was saved –as far as I know–thanks to research about Her2 and Herceptin. I so wish that other types of miracle treatments can be developed for all breast cancers.

    In addition to sending this to Obama (and his wife!), I hope you also submit this as an Op-ed type piece for the Post and/or NY Times. Only if you have the energy of course. No pressure🙂

    Keep fighting, Susan. You have tons of fans here who are very awed by you.

    Peace be with you.

  12. You are amazing, Susan.

    I appreciate that so many people take the time to participate in awareness activities, whether it’s sporting a pink ribbon or playing a game and yet…I can’t seem to bring myself to don pink in the name of awareness. It just feels so…insignificant and cute in the face of something so horrible. And as somebody who isn’t personally touched by breast cancer I don’t feel like I have the right to be glib about it…if that makes sense?

    I love reading your posts because they always make me think. Many big hugs going your way.

  13. mayberry says:

    Oh, please send it! It’s so very powerful.

    Better yet, send it, and let’s all of us who are reading print it out and send it too.

  14. You are such a powerful voice. People can’t *help* but listen. Lots of love and hugs to you and your boys.

  15. Rachel says:

    Wonderful, wonderful, wonderful.

    always following, rarely commenting.

    You’re an inspiration.

  16. You are amazing. And yes, President Obama needs to read this. I love Amy’s comment, turn that pink to green! (Speaking of pinkwashing, just saw a pink donut with ribbon shaped sprinkles at 7-11. Gah.)

  17. Well said.

    I took your “Cancer is not pretty. It’s not pink.” quote out of context and tweeted it with a link to your article. Catching a little bit of crap for it. That’s ok because I agree.

    Thanks so much for your well written and clearly articulated article.

  18. NYFriend says:

    Your writing is very powerful, and as you often do, I am moved to tears. I hope the people with the purse strings will read your letter and act upon it.

    I know you’re not looking for this – but man, this really sucks. I am so glad you are such a strong woman to fight this fight, because the world needs people like you and people like your children. I hope you are resting well.

    Please give your three lads an extra hug for me, and then a great big (*gentle*) group hug with them back to you.

  19. Bon says:

    amen. i hope it gets straight to him, b/c i don’t think it can fail to make a powerful impact.

    i am just so sorry you have to write it all. but grateful. deeply grateful for your courage, your willingness to keep plugging away at getting the message out.

    xo.

  20. marty says:

    I’m so glad you hit on the issue of specific research. So much of the breast cancer research is driven by consumer market. Big pharma can’t sell enough drugs for IBC because not enough women get it. Grants go to research on cancers that effect the most women. So forth and so on. Even my own husband who is working in cancer research just had to dry my tears and listen to me scream at him about why won’t anyone work on IBC?????

    It’s because there is no money to do it and no money to make from it.

    I pray that somebody listens to you because IBC research NEEDS FUNDING.

  21. suzieswapper says:

    I can’t even find the words to let you know how much your letter touched me. My mom and grandmother both suffered from breast cancer, once even at the same time. As a kid, I was angry at my mom a lot, yet as an adult now i can see it was fear, not anger driving me. I still have a hard time discussing it with people and live in constant fear of my “yearly’s”.
    That said, my grandmother passed away peacefully at 94 and my mom at 74 continues to travel the globe, cancer free for 13 years now!!
    Thank you for your letter!

  22. magpie says:

    I hope the White House actually reads the letter. Good on you for sending it.

  23. Siobhan says:

    You are awesome. What a great letter.

  24. annie says:

    As someone with a rare and therefore unmarketable, cancer. Thank you! If you need any co-signatures count me in.

  25. meme says:

    Susan,
    Awesome letter I hope you send it. You and your family are in my prayers.

  26. Dear Susan,
    Your letter is very appropriate and realistic. I like pink, and am a breast cancer survivor, which I am so grateful to be, and a single mom raising 2 sons that are now teenagers (diagnosed in Aug. 2008, surgery, chemo, radiation all finished up April 23, 2009). I continue my checkups at Cancer Treatment Centers of America–they truly are the best experts in understanding cancer and treat the whole person with cancer, not just the cancer. I also applaud your courageous letter to Mr. Obama–hope he reads it and actually cares, since he has a wife and 2 daughters that could become statistics in their future–none of us ever expected it to happen, but it did. I believe there is money for research but pharma companies are greedy and could do more themselves. I have a web site with my story and artwork if you would like to visit it: cancercenter.com (my name is terrece crawford). Take care and blessings to you and your family!

  27. I hope he reads it.

  28. Yeah, what karengreeners said. I hope the prez does take the time to read it, assuming it gets past his staffers and you don’t just get a form response.

    I hope and pray you’ll get the cancer beat.

  29. whymommy says:

    Wow, all these comments, 50 tweets, and 50+ shares on Facebook too? Thanks, y’all. It’s funny … I’m actually a BIG fan of President Obama. But I abhor the empty gesture, and I had to speak out.

    Pink lightbulbs don’t have healing properties. We need the research.

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