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. 

An Open Letter to Breast Cancer Researchers: Are You Building Stairways to Nowhere?

Are You Building Stairways to Nowhere?

Are You Building Stairways to Nowhere?

Dear Scientific Researcher,

What you do is extremely important and provides hope to those like me living with metastatic breast cancer.  The projects you choose, and the collaborations and advances you make, can be vital to ending the set of diseases known as breast cancer, thereby saving thousands of lives in the future.

I have met many of you on various review panels and have sat in the room with you, discussing the strengths and weaknesses of proposed breast cancer studies.  You bring in scientific viewpoints; I bring in the views of the community, particularly the views of the patient advocate.  Sometimes you get wrapped up in the elegance of a specific study and shift uneasily in your seats when I ask:  “So how does this study help us save lives or prevent the disease from happening in the first place?”

I realize how difficult it is to obtain funding for your labs and that some of you have had to dismiss some talented members of your teams due to lack of funding.  I have raised over $50,000 for breast cancer research and have lobbied dozens of times on Capitol Hill to secure your research dollars.   I feel your pain.

I have attended far too many funerals cloaked in pink ribbons.  Inspiring women, creative women, and yes, demanding women and men have suffered and died at the hands of this disease.  Each day, those who call themselves survivors, live with dark clouds over their heads housing thunderbolts of lingering fears that recurrence and death is in the forecast.

When I read funding proposals, it makes me aware how little you really know about curing breast cancer in humans.  You don’t know how many breast cancers start, how to accurately detect breast cancers, why mutations happen, why the immune system ignores these aberrant cells, how cancer cells can survive throughout the body and colonize in new locations, or how some cancer cells resist treatment.  Sure, you know some, but not enough.

We have spent billions of dollars on breast cancer research, from both the public and private sectors.  You have written thousands of peer-reviewed journal articles on the subject.  You have attended and presented at hundreds of breast cancer symposia, costing millions of dollars and thousands of hours.

Securing study funding, publishing papers and presenting findings seems to have become an end unto itself for some of you.  Finding real cures for real people appears to have been lost in the shuffle.

You study signaling pathways that end up worthless as targets for treatments due to the body’s ability to create redundant systems.  You study different dose levels of the same thirty-year-old chemotherapy treatments on lab mice and proudly boast that the new combination extends life a few months.  You repeat unsuccessful research studies because prior scientists failed to produce their findings.  You plunge into nanoparticle technology to find the right shape to fit into cell receptors in order to develop a toxic payload into cancer cells, and discover the keys can’t find the locks.  You study the neighborhood around cancer and try to figure out if that’s what fosters new cancer formation.  You spend years discovering new cellular mechanisms, write about them, and then look for your next project.

All of this:  Yet people keep dying.  At least one has died from breast cancer as you read this letter.

But are you building stairways to nowhere?

What happens after you publish your findings?  When you finish a project what happens next?  How are your results applied to get us any closer to actual treatments or prevention?  How do you hold yourselves accountable to clinicians, patients and the general public?  How can you make it less about “publish or perish” and more about saving lives?  How can you make sure you ask the right questions before starting any new project instead of building a stairway leading to nowhere?

Are you satisfied with your own progress?  How would you feel if someone undergoing treatment looks over your shoulder as you work?  Would you personally go to your friends and family, asking them to donate to the work you are doing right now?  If your own loved-one was diagnosed with breast cancer, what steps would you take to make sure they would not perish from the disease?

These are important things to think about.  I know you work hard.  I work hard at staying alive.  Both jobs are difficult.

What I’m asking you to do is to consider your role in the fight to end breast cancer.  Are you winning or losing?  What can you personally do to ask the right research questions that are not redundant or merely interesting, but are important to finally putting an end to breast cancer?  How can you make sure that your research makes a real difference and foster translation into the clinic?

I’m fighting the battle every day.  Please do what you can to fight with me.  Put an end to building stairways to nowhere.

Sincerely,

Sandra Spivey

Illness Magnet

It’s often said that “Opposites Attract” but what about people with illnesses or those who know someone with serious heath conditions?  Do they attract?

When I was originally diagnosed with breast cancer in 1995, I unintentionally became the hub of all things health and cancer related.  At work, people told me stories of Aunt Matilda who died a horrible death from colon cancer that eventually invaded her brain.  Or a best friend who, after battling breast cancer for four years, died leaving behind her five year old triplets to be raised by their unemployed alcoholic father.

Why did I have to know about these people?  What was I to do with such information?  It seems when some people hear the word “cancer,” they do a brain search for that word and blurt out whatever story is in their head about the subject, no matter how horrifying.  And the person who patiently listens to the story (me) tries to figure out if she’s meant to comfort the story teller, ask more questions about the situation, or detail how my situation might be different than the tale’s protagonist.

Is it not enough to have to face the burden of one’s own illness, but also have to shoulder the burden of emotionally supporting another person’s loss or health scare?  Or to provide specifics about my own health issues to someone who has thus far ranked as a “say Hi in the hallways” friend up to this point?

What I’ve surmised is that some people just don’t think.  They don’t know what to say when they learn of a serious health condition of one of their friends, co-workers or family members.  So they think about themselves and their experiences with the disease or related disease.  They share War Stories.   This is similar to situations pregnant women who have to listen to jaw-dropping stories of 48 hour labors or babies born with severe challenges.

When I discovered I that my cancer had spread to my bones, one woman at work checked in on me daily, letting me know how her sore back was coming along.  She had the condition for months and kept the pain under control with yoga and Tylenol.  As she spoke, my internal dialog was active “I realize she’s hurting, but how does telling me about it do anything for her or for me?  Yes, she is having a hard time standing up straight, but the pain in my hip makes it nearly impossible for me to walk at all.  And this wig is really itchy.  I need some alone time.”  I had to look around my office to see if there was a hidden camera recording each encounter, which would be played on some future reality TV program.  Was she going to burst out laughing, pointing to the camera and say “Gotcha”?

There came a time when cancer treatment caused my immune system to crash and I needed to stay away from people.  So, during weekdays, I my office as a bunker, equipped with jumbo bottles of hand sanitizer.  I was lucky to have a job where I could use the phone and email to accomplish most of my objectives.  By this time, many more co-workers knew of my condition.  The in-person visits became phone calls and emails.  People asked what I needed.  I had to figure out what I needed.  Maybe I just needed to be alone?

I found this great article on the American Cancer Society’s website:  “When Someone You Know Has Cancer”

http://www.cancer.org/cancer/news/when-someone-you-know-has-cancer

Another article “When Someone You Work With Has Cancer”

http://www.cancer.org/treatment/understandingyourdiagnosis/talkingaboutcancer/whensomeoneyouworkwithhascancer/index

Both have outstanding tips, thoughtfully put together from those who have been through treatment for cancer and those who have supported them.

As I was working through my emotions on the subject of feeling like a health junkie dumping ground, I decided to take the high road.  The stories had to be told by the teller.  I could choose listen to them as a way to both help the other person and a way to understand that the other person was coping in the best way they could at the time.  I learned how to tactfully cut conversations short.  I learned that people wanted to help but didn’t know how.  So I developed ideas on how they could help:  send me funny cards in the mail; shoot me an email every once in awhile to tell me how they’re doing;, text me a humorous photo of something happening in their lives.

After all of this, I trained to become a breast cancer helpline volunteer and speak with those facing stage IV disease.  I’ve been able to share in the frustrations of other women feeling like they have become Illness Magnets in their workplaces or families.  And most importantly, I’ve given them some perspective on how they can broaden the conversation away from disaster stories to things that can actually help them get through the workday.

Yes, I’m still an Illness Magnet.  But, no, I don’t let every scrap of disease-related situations stick.

A Bone to Pick with Peggy Fleming

Have you ever called a radio talk show program? Neither had I until I was dead tired after going through bone marrow transplant in 1999 for stage IV breast cancer. I had it out with Olympic ice skater Peggy Fleming.  Well, I didn’t exactly duke it out with her, but I was very concerned about a Parade Magazine article where she was quoted as having contracted breast cancer in 1998 and now was “cured.”

http://www.peggyfleming.com/about-2/

Using the word “cured” really bothered me.  Currently there is no known cure for breast cancer.   If we had a cure, we wouldn’t be participating in a “Race for the Cure”  in our communities. We also wouldn’t mourn the lives of thousands of women and men who die from the disease each annually.

I felt that Peggy Fleming’s comment might make others think if they were “cured,” they wouldn’t need regular check-ups with their surgeons or oncologists. Why spend the money if there is no chance of recurrence? Having been involved in the breast cancer community for a few years, I knew of women who had been diagnosed with early stage breast cancers, only to see cancer return decades later.

Unfortunately, there currently is no 100% preventive treatment against recurrence.  One morning in October 1999, as I was dragging my chemo-drenched body out of bed, I was listening to KPCC’s “Talk of the City” broadcasting from Pasadena, CA.  The guest was none other than Peggy Fleming speaking about her new autobiography.  My heart started racing.  This was my opportunity to give her a message.

I called in as soon as the phone number was announced and reached the phone screener immediately.  As I was explaining what I wanted to talk about, I got teary-eyed and my voice cracked a few times.  The screener said my topic sounded great and put me on hold.

As I was on hold, I was thinking of all the reasons why I should hang up immediately.  Why was I doing this?  Peggy Fleming is a nice person.  Why make her feel bad?  Before I could answer my own questions, I heard “We have Sandi from Laguna Niguel. What is it you’d like to talk about with Peggy Fleming?”

I swallowed hard just to keep my heart from bursting out of my throat.  Citing the Parade Magazine article, I identified myself as a breast cancer survivor and said that it was a mistake for Peggy Fleming to label herself as “cured.”  She responded in her usual gracious way that she had a very “curable” form of breast cancer.  The host mentioned that being “cured” is a state of mind.

I interrupted by stating that if I had labeled myself as “cured” after having a “curable” form of breast cancer diagnosed four years earlier, that I may not have continued my follow-up appointments with my oncologist and may have missed the fact that breast cancer invaded my bones in 1998.  I could very well be dead by now.

Ms. Fleming said she was sorry if others interpreted her comment in that same way and said she in fact was continuing her follow-up appointments.  The host then talked about the importance of celebrities making accurate statements to the public.

That was about it.  I know there were a few other exchanges but I can’t remember exactly what they were.  I listened to the rest of the show.  The other callers were “gushers.”  They gushed about Peggy Fleming’s Olympic achievements and how they admired her as a person.  I admire her as well but my call was the only one to challenge her public statements.

Is this a case of breast cancer survivor against breast cancer survivor?  I think not.  I’d like to believe it’s about educating those who should know better.  It’s about taking responsibility for one’s words and actions, particularly for people in the public eye.  I hope I made an impact on one individual who has the potential to help the breast cancer cause in so many ways.  And, I hope that one day she and others can confidently and accurately label themselves “cured.”

Starting out

Since my retirement as a human resource professional in 2008, my life has been filled with cats and cancer. I have been lucky enough to be asked to mentor several people I’ve worked with in the past on career advice and sticky people issues. That has helped keep my mind active.

My grown daughter, Allison, and her tuxedo cat, Bickley, moved back home soon after I retired. Allison and I soon started volunteering at the local animal shelter, cleaning cat cages and playing with cats every Saturday morning.  We adopted cat #2, Tiny Baby Sweetheart Honey Cupcake Sugar Princess Yummy Gumdrop, who proved to be everything but Tiny. Soon after that, we decided to adopt our son’s three-legged cat, Buddy (who my husband Bill now calls Zoom-Zoom due to her adept running skills).  So our lives are filled with floating fur and hair balls. 

In 1995, I was diagnosed with breast cancer and expected to complete treatment and be done with it, as happened to my mom in 1980. My cancer had other ideas and infested my bones in 1998 at age 45. I read where 10% of those with the same disease lived past 3 years. I decided to sign up for that group and am happy to say that my membership application was accepted. 

I’ve had several cancer adventures, from 3 weeks in the hospital for a bone marrow transplant to sitting next to cancer researchers determining the strengths and weaknesses of various breast cancer research proposals.  

So my life is now filled with cats and cancer. The cats provide therapeutic value in dealing with cancer. It’s the perfect mix for a retiree like me.