NOTE: On Monday February 6, we lost one of the great voices for parenthood, planetary science – and cancer. Stricken by a rare, tumorless cancer called IBC (Inflammatory Breast Cancer) Susan Niebur (the above photo was taken last May) fought to stay alive and managed to do so for way longer than expected. As she so often noted though, nobody “beats” stage 4 breast cancer. Up to her last days, she chronicled not her illness so much as her battle to support moms with cancer and cancer research and to be there for her kids and husband one more day — and made it through one more Christmas – a real gift. Here, again, is the speech she gave, at the Blogalicious Conference last fall.
by Susan Niebur (@WhyMommy)
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, Iâ€™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 weÂ fight for more birthdays.
After I spoke, Angela shared her testimony and encouraged everyone to sign up at ACS.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.
Photos from Susan's friends