I’ve been looking forward to Blogalicious, the annual conference celebrating the diversity of women in social media, for months. This weekend, it finally arrived, and my husband whisked me from radiation treatment to the conference across town, arriving just in time to plot and plan the next event with American Cancer Society representatives.
Friends @Teachmama Amy and @Techsavvymama Leticia met me at the door with a wheelchair, freshly borrowed so we could navigate the huge conference center in comfort. I gratefully accepted, fighting off nausea and dabbing on makeup, and we headed over to the meeting in style.
When it was our turn, shortly after @TedRubin tried to lead the conference attendees to lunch smiling and skipping, Angela, the American Cancer Society representative, talked about the more birthdays initiative and introduced me to “tell my story”. My (personal) goal was to celebrate the work and research that had brought us this far, to teach why more research is necessary, and to ask for more research on metastatic disease. This is what I said:
I am alive today because of research funded by organizations like the American Cancer Society and the federal government.
I was diagnosed with inflammatory breast cancer in June 2007. I had a year of chemotherapy, surgery, and radiation, all developed by really smart researchers funded through the efforts of men and women like you. The treatments worked, and I have *lived* for 4.5 years while my babies grew up and went to school. I am grateful, so grateful, for that.
But the cancer came back. Now, like 150,000 other women and men in America, I am living with metastatic disease. Metastatic breast cancer, as some of you know all too well, is when the cancer moves away from the breast and recurs in the lungs, the liver, and other vital organs.
Now, I’m going to let you in on a dirty little secret: No one dies of breast cancer confined to their breast. Some of us die from treatment, but most of us die when the cancer has moved to our vital organs and shut them down. We die of metastatic disease. There are treatments we can try, but there is no cure.
When I was diagnosed with metastatic breast cancer this year, I was reassured that there were 20 chemotherapy drugs that we could try. We tried one. It worked, for a while. Then it stopped working. Three of the 20 drugs are in short supply right now, so I can’t have those. There are sixteen drugs left.
I will be on chemotherapy once a week, for the rest of my life. That is, until we’re out of drugs that work. That is why I believe we need more research. All of us with metastatic disease — and the 30% of women whose breast cancer will spread and become metastatic — will die without more research.
Oh, and — Research on metastatic disease is woefully underfunded, at just 3% of all breast cancer research.
Fight with me.
As I fight for my life each day at radiation or each week at chemo, join me and the American Cancer Society as we fight for more birthdays.
… After I spoke, Angela shared her testimony and encouraged everyone to sign up at cancer.org for more information about what they can do in the fight against cancer. The lights were dimmed and the two hundred bloggers in attendance lit candles perched on mini cupcakes and sang “happy birthday” in honor of the people in our lives who have celebrated more birthdays, thanks to cancer research and the treatment it enables.
Rock on, ACS, and rock on bloggers with heart. I hope you help us share the message that there is still work to be done, and we need to do the research on metastatic disease if there is to be hope for a cure.
I am SO glad that pain is somewhat diminished! Where can we donate funds so that they will make a direct impact on the research into metastatic cancer? Is there a particular researcher or group that is leading the way? Just tell me where we can make a difference in this, and we’ll do it. I just need a little direction.
Someone very dear to me was recently diagnosed with Stage IV lung cancer. I firmly believe that if we can solve these problems with one “brand” of cancer, the rest will fall like dominoes. And I do think breast cancer is going to be the first one that sets off the whole deal.
Just let me know where we can send some funds.
I have three ideas, D’Lyn, and I’ll vet them this week before making a recommendation.
Thanks for asking!
The question I always ask is, “What percentage of my donation will be used for research to treat or prevent metastatic cancer?” This information is usually found on a web site.
A followup question might be, “May I designate my donation to be used only for research grants?”
I’ll let you know when I hear back from all three organizations.
How absolutely wonderful that you got to speak before a large crowd! I am in for the long haul on this one and I’m not going to stop until everyone realizes we need to fund the research. And, until the pink dollar pie shifts to an acceptable percentage (as in, we are getting the lion’s share of the funding toward all research and advocacy for those in need), I have no intention of quieting down.
Good job on the message….
Thanks, Anne Marie. Let’s do this thing.
Susan, that is excellent. Thank you so much for speaking for all of us, and letting people know that we need more funding of metastatic breast cancer research. May that be as resounding in our culture as the pink ribbon is.
My husband’s last birthday was in February. My kids last birthdays with their dad were last fall. You all deserve more birthdays. More progress, a lot more progress, needs to be made in curing cancer, period. I love the doctors you and I have in common, but I won’t be happy until they’re all out of work. God bless you, Susan.
Happy birthdays. You know we are going to have to do something BIG for 40.
I am so proud to know you. You are amazing.
I hope your speech was followed by a round of applause and a standing ovation. We need an “army of advocates” to turn their words into action as you have, Susan. Thank you for being an inspiration to myself and so many others.
Susan, thank you for educating me and the others folks out there that did not realize that only 3% of the research is for metastatic disease (what the heck). You have educated us in such a beautifully written way. You have my/our attention, thus you have succeeded in bringing attention to this disease with your blog. I plan to continue to pass along your message.
Thank you also for sharing your struggles and smiles along the way. Here’s to more Birthdays and pain free times!
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What a great speech, Susan. You are amazing. I too am looking for your answer on best way to donate to fund research on metastatic cancer…
Love this. So glad you were able to make it to Blogalicious and talk about the need to keep fighting for more research and more birthdays. You are the ultimate fighter!
You ALWAYS make me cry with your writing. BlogHer 10? I sobbed.
More birthdays baby. More and more please!
Rock on, WhyMommy! You seriously rock. Congrats on the great speech!
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Loved spending time with you this weekend and this was my favorite part of the whole conference.
You SO rocked your speech, my friend! I’m proud of you for being brave enough to be tough and honest with that group of women–it’s hard but what we need to hear, and what you need to say. Loved the time I got to spend with you!!!
Even though I’m in DC, I couldn’t come to the conference this year (I’m vastly pregnant), but I’m so glad I got to read your remarks. Thank you, again, for sharing your story.
I am also a Stage IV metastatic breast cancer patient. In January of 2009, a small group of women(including myself) began a 501(c)(3) organization called METAvivor Research and Support, Inc in Annapolis, MD. METAvivor’s mission is to raise awareness about our disease, support women and men with the disease and to raise research funds that will change our illness from a terminal disease to a chronic, controlled condition. With that mission in mind, we just presented our 2011 grants to two outstanding mbc researchers. Alana Welm, a researcher at the University of Utah, received a $50,000 grant to continue her research on unique mouse models that are injected with actual patient’s tumors. Andrea Mastro, an mbc researcher from Penn State, received $25,000 to continue her research on dormant mbc tumors. All the applications we received for these grants were evaluated by a committee of mbc researchers!
Please go to our website, http://www.metavivor.org, for more info on our organization and to contribute to our cause. By the way, 100% of our donations(minus any PayPal fees) go into our research fund unless otherwise directed.
And, Susan, I hope your treatment is successful, and that future scans will show NED. We are all in this together!
Liz Szabo’s article on women with metastatic breast cancer, including your quote, appeared in the Chicago Sun-Times on Sunday 10/23. Peace.
I SO enjoyed spending time with you. I’ll continue to pray and share your story.
[…] tables as the American Cancer Society made a moving presentation about the More Birthdays Campaign. Susan Niebur of Toddler Planer took the stage and touched every single one of us listening to her with her moving story. I had to […]
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