WhyMommy Breaks Hearts in Breast Cancer Speech

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, 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 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

70 comments

Jackie Agusta
Jackie Agusta4 years ago

Very brave woman, thank you for sharing :-)

JNoFwdsNoMail Massey
.4 years ago

To Carol F. ,The truth is chemo and radiation do not Cure cancer!???

I, as an 18 year plus survivor of Breast Cancer that had metastisized to 10 of 14 lymph nodes
by the time diagnosed, feel that your statement is not based on fact, but on opinion. Yes, the Chemo and Radiation are ravaging to the body and leave sometimes long lasting side effects. But without those surgeries and treatments I don't believe I would have been here long enough for the added alternative therapies I CHOSE, to have helped in my CURE, yes CURE!

It is each womans right to choose or decline any forms of treatment for her personally. But
please do not speak of what you don't understand unless of course you in fact have been
through it in which case I'm sorry that you were not cured..

But, I do heartily agree that we do need to find the cause and more money needs to be spent
on research. Since we have done everything in our power as humans to destroy most of what
is good on our planet and have used poisons in many forms for many years, I'm afraid the
cause will be hard to eliminate.

Thanks.

Peace, Love and Light to all ;-)

Shannon M.
Shannon Mckarney4 years ago

Thank you, Cindy, and thank you, Susan, for telling your story so openly and honestly.

Quanta Kiran
Quanta Kiran4 years ago

Hi

Apologies. the first comment came from a document i was reading at the time. Please delete. Thanks!

Quanta Kiran
Quanta Kiran4 years ago

Thanks

Gloria Morotti
Gloria Morotti4 years ago

Wake up, folks. Cancer is Big Business. Without it, lots of people would be without jobs, including doctors with their monumental income. Slash, Burn and Poison is not the way to health. This woman was given a few more years to live. Is that living? Knowing that you will suffer and die anyway? I'd rather die of my disease than poisonous chemotherapy (mustard gas invented in WWII to kill people), killer radiation, and worthless surgery. I get crazy on this topic, as I have been ill all my life because of doctors and dentists and their "authority." Allergy injections as a child that my body was unable to rid itself of, mercury from dental fillings, radioactivity from living in Santa Fe when a laundry there was not using filters for the laundry it was doing from Los Alamos, Candida from antibiotics that killed all the natural flora in my gut and allowed the candida to grow unchecked, fluoride that was put into my water under the false pretense that it prevented cavities when in reality it is a poison. The list goes on and on. Let's not forget the fact that I never received a drop of breast milk because the AMA and the American Dairy Association collaborated and told women that breast feeding their children was animalistic and they should give them cow's milk and sugar. It is a wonder any one of us is alive.

Anita R.
Anita R.4 years ago

Emanuel v.: I do genealogical research on my family. One of my great-great-great grandmothers died of breast cancer in 1845. She was about 50 years old. Her husband was a wagon-driver in a rural area of Suffolk, England where the most common economic activity was raising dairy cattle.

Carol Fyfe-Wilson

The truth is chemo and radiation do not Cure cancer! Chemo is a poisonous cocktail of drugs that kills cells including cancer cells. Chemo also seriously jeopardize the immune system. Radiation burns what the chemo might have missed but neither address the CAUSE of cancer. Drugs make big money for the pharmaceutical companies-eliminating cancer by finding its cause, does not. Finding the cause will cost the chemical companies as there it a correlation between chemical sprays used on our lawns and our crops, additives in our foods, the medications given lifestock, pollutants filling our air and water sources. Going clean and green does NOT benefit the pharmaceutical and chemical companies.

Faith Billingham
Faith Billingham4 years ago

thank you for this article

Carole R.
Carole R.4 years ago

Thank you for sharing this story.