Race for the Cure?

I nearly didn’t speak at the local Susan G. Komen Affiliate’s Race for the Cure this year.

My very good friend, Jeanette, the co-chair of the Survivor’s Ceremony, asked me to talk about my stage 4 breast cancer journey to the over two thousand survivors and supporters present at this part of the event.  “This will be the part of the ceremony where we really want to hook into their emotions.  Your story will do that.”

My gut reaction was “No, I don’t do pink and I don’t do Pinktober.”  Those of us living with metastatic breast cancer have voiced concerns about the Komen organization and how it’s not fully living up to the founder’s promise to her sister by investing most of their funds in research to end the disease, particularly research to end metastatic breast cancer.  Details about this widening gap have been posted in several blogs.  This one, by Beth Caldwell is particularly eye-opening:  http://cultofperfectmotherhood.com/komen-is-not-coming-to-save-us/

But then I thought I could use this opportunity to educate the local breast cancer community about stage 4 breast cancer (also called “advanced,”  “terminal” or MBC-“Metastatic Breast Cancer”).  The “Story Half Told” study of the general population and breast cancer survivors found that awareness of the kind of breast cancer that kills is very low.  See  http://www.storyhalftold.com/

Speaking at the Race for the Cure could be my way of spreading the word.

After submitting the first draft, I found out that I had a total of 3 minutes for my speech.  My presentation ran much longer than that.  Then it was suggested that a few parts of my speech might “terrify” the newly diagnosed in attendance and those sections should be deleted.

That comment put me over the edge.

Monsters terrify.  Am I a monster?  Through email communication, I explained that I need to represent those living with MBC and educate the community in general.  If not allowed to do that, I suggested that they select another speaker with a much more uplifting presentation.  I wasn’t backing down.

Jeannette called me and we went over my concerns.  I ended up crying during our conversation.  All of my feelings about the Komen organization, my commitment to those living with MBC, and not knowing the results of my most recent scans whirled together and created an emotional meltdown.

Luckily Jeannette was patient enough to talk me through all of it.  She finally asked “Sandi, what would you like to say?”  I let her know that I’d shorten my speech but would include points that I felt I needed to communicate.  She was fine with that.

I didn’t look at my first draft.  With a blank screen, I started writing, attempting to get “the best of Sandi Spivey and MBC” into a 3 minute presentation.

The committee accepted my speech as written.  Here is what I said at the race:

Back in 1980, my mother told me she had just been diagnosed with breast cancer.  With a full-time job, a husband, and a ten-month old baby boy, I was not always there for her as she completed surgery, radiation and reconstruction.

Fifteen years later, in 1995, my mother was with me as I discovered I had stage 2 breast cancer.  My pathology report mirrored hers.  She didn’t say it then, but she was convinced she had “given me” breast cancer. 

Years later, I found out that I do not carry any of the known breast cancer gene mutations – I didn’t inherit breast cancer from her.  I saw the guilt lift as I told my mom.  That is a moment I will cherish.

My mom was my rock as I completed surgery, chemo and radiation.  I opted for chemo as insurance – a step more than she took.  I was convinced I would experience years of cancer-free survival, just like my mom.

My chemo insurance policy failed.  Three years later in 1998, I felt pain in my hip.  This pain was from metastatic breast cancer – no, not “bone cancer” – but breast cancer that invaded my bones. This is the kind of breast cancer that kills.

Back then, 90% of metastatic breast cancer patients died within 2-3 years of diagnosis. But something clicked in my warped mind:  “If 90% die, then 10% LIVE!  I’m going to be in the 10%!  After all, someone has to be in that group and it might as well be me!”  Today, about 25% of stage 4 breast cancer patients live past 5 years and those statistics are improving with better treatments. 

As I started chemo, my mom was by my side, along with my husband, Bill, my dad, my 2 sisters Pam & Cathy, and my teenage kids, Tim and Allison.

One evening, Allison got wide-eyed and said “Granny had breast cancer and you have it.  I’ll get it too, and I want you to know that I’m OK with that.” 

Oh my gosh! 

Her comment motivated me to get involved in ending breast cancer.  I completed the Komen Advocates in Science program and Project Lead.  These training programs gave me the credentials to sit on breast cancer research panels and be the voice of the patient.

Through my breast cancer education, I have learned several things.  One is that awareness of breast cancer is really, really high, but awareness of stage 4 breast cancer is low especially among breast cancer survivors.  Another fact: nearly 30% of all breast cancer survivors relapse, which is why your oncologists want you to follow up with them. Metastatic breast cancer is incurable but it can be treated.  But treatment never ends.  I have had well over 200 chemotherapy infusions and have taken countless anti-hormone pills. 

I am standing here among survivors, but like a few of you, I’m an outlier – I’m not really a breast cancer “survivor.”  I’m living with breast cancer and have been for 18 years.  I haven’t beaten it and likely never will.  My goals are to stay as healthy as possible and continue to push for more and better research. Today, I’m elated to be here with you to celebrate another year of life.

Let’s work together to support real research that leads to cures, so that we finally end breast cancer forever. 

8 thoughts on “Race for the Cure?

  1. Sandy. Several of my friends who were at the race said that people were riveted by what you had to say. So many know do
    Little about breast cancer. They know about the loved ones they support but sadly yours is a unique story that you have been living for so long. I believe that people heard you and were moved by what you said. One of my friends called me two days after the race and was still processing what you said. Kudos to you for enlightening so many and for having the courage to stick with your convictions. How do I follow your blog. Dani

    • Hi Dani – Thank you for your post. I very much appreciate your feedback and the story about one of your friends. To follow my blog, click on the “Follow” button on the left side under the photo banner. Based on your comment, I added that button on my site. There was another “follow” button down below, but it was harder to notice.
      ❤ Sandi

  2. Dear Sandi, You are a true warrior and I feel you did the right thing by sharing the hard truth and yet the hope this can be lived with. As a nurse from as far back as the 60s I have seen the devastation of metastatic cancer. When I received my diagnosis in 2003 that was all I could think about. It took me getting negative mammograms after 7 years before I breathed a sigh of relief. God bless you on your journey. Diane Dorman

  3. Dear Sandi: Thank you for having the courage to speak from the heart and to share our truth. Change starts with understanding and empathy. You did so much to further our efforts to be heard and seen. I too endured treatment for Stage II only to find out less than two years later that I had MBC. Too many women are not told the truth about the rate of recurrence and the signs to look for. Yours in Living, Pam Albers

  4. Sandi, thank you for your story. I completed breast cancer treatments ( chemo) for Stage 2 breast cancer . I did not know about the MBC recurrence rates until I asked my oncologist to verify the stats I had been reading ( up to 30% of women diagnosed with early stage b/c will have metastatic breast cancer), Needless to say, now that I know this, I will be much more in tune with any unexpected pain in my body, that I may have downplayed previously, .

  5. Pingback: The Accidental Amazon » The Misogyny and Deplorables of Pinktober

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