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I want more

I’m always conflicted when I see my friends post photos from participating in a well-known race “for the cure.”  Those photos are filled with smiling people (mostly women), drowning in pink, waving pom-poms, ribbons and flags as many of them celebrate “survivorship.” 

I looked up the definition of being a “survivor” (according to this well-known group) and it’s anyone who has completed treatment for breast cancer.

That leaves me out as I will never complete treatment.  I will be in treatment for the rest of my life, however long that may be.

According to this definition, I’m not a survivor.  In the summer of 2014, the organization changed their definition of a survivor… a survivor was anyone who had been diagnosed with breast cancer.  This, too, rankles.  According to that definition, I am considered to be a survivor, in spite of the fact that this disease is most likely going to kill me long before an expected life span.
We can’t have it both ways.  We either live or die.  Actually, we all will die, but we all won’t die of breast cancer.  Not all of those diagnosed with breast cancer will live; therefore, they can’t be called survivors.  Put bluntly, they’ll be called dead.
There will be lots of races “for the cure” during the month of October.  Most of these races will feature brilliant women making speeches about how cancer changed their lives.  While platforms are filled with women sharing their stories, people like me are seldom invited to do so.  There is the occasional Stage IV terminal metastatic breast cancer patient giving a presentation, but she is carefully vetted with lots of conditions given as to what she can say.  The “walking dead”  who are invited to speak at these races are told to talk about hope. 
If I were invited to share, this would be my speech.
Every single one of you here deserves to be celebrated!  Your life matters and YOU make a difference to someone in this world.  You have learned that some things are not to be taken for granted and you have gone through a lot to be here.
I celebrate with you!  I am truly very happy that all of you here are free of the disease known as breast cancer. However, I would be hesitant to say that all of you are cured. In fact, I would be hesitant to say that *any* of you are cured.

The fact is, up to 30% of women diagnosed with earlier stage breast cancer (This is excluding the controversial Stage 0 pre-cancer diagnoses.) will have a recurrence of breast cancer either in the breast or in distant locations. While the statistics for Stage III breast cancers are higher for this recurrence, the fact is, Stages I and II have their levels of return as well. 
Many of you are holding your breath to get to the “magical” five year point.  The time where you feel free to exhale with a big sigh of relief, saying, “Whew!  I made it!”  And while it’s true that once you hit that five year point, the chances of recurrence are lower, it’s not true that you are completely free of the chance of return. The reality is that the medical world simply has no way of accurately predicting who will have recurring disease and who will not.  We just don’t know.

As time goes on, the pink shadow of fear seems to lessen and you will go on with your lives, participating in events like this one, never forgetting the year you went through to be here. The smiles, the cheers, the camaraderie, the survivor lap …  all this puts you into a special atmosphere of survivorship that others are hard pressed to understand. It’s all good, but for me, it’s just not enough.

I will never have what you have.
If you look around, you will see many shirts with pictures and/or names of people who are being honored by this event.  We ask about them and we grieve for those who are gone.  For those who can’t take the victory lap because they didn’t survive.  Maybe they took a victory lap one year, but the next year they were gone.
You see, I want to be more than a name or a picture on someone’s shirt.  I don’t want to be “honored” because I’m dead.
  I want more. 

I want a cure.
I was diagnosed with Stage IIIb breast cancer in February 2012, just before my 49th birthday. While being diagnosed with breast cancer wasn’t a huge surprise (My mother died of breast cancer at age 52), I was shocked that the cancer was so advanced.  I did everything “right.”  I had regular mammograms and I had regular ultrasounds. I did monthly self-breast-exams.  I had dense breasts that like to form cysts.  I got them all checked out.  And I still got breast cancer, long before the average age of diagnosis.
I was diagnosed with Stage IV metastatic breast cancer in January 2013.  I had a few short weeks where I was considered to be free of disease but even those weeks were affected by increasing pain in my neck from then unknown tumors in the bones there as I tried to rebuild my body after the trials of chemotherapy, surgery and radiation. It is suspected that I was Stage IV from the beginning, but that the distant lesions were too small to be seen at the beginning of this process. My Stage IV diagnosis showed cancer in every single one of my vertebrae, in both sides of my hips, in some ribs, and later on, new lesions formed in a hip socket. In May 2014, just as the Mother’s Day races were happening, the cancer moved to my liver.
I didn’t do anything wrong to develop Stage IV breast cancer.  And the opposite is true for you … you didn’t do anything right.  As much as we’d like to think otherwise, we are not in control of how our bodies respond to treatment. 
These races are meant to encourage and to cheer … and I’m all for that … but they miss out on the reality that every hour of every day, four women die of this disease.  Look around you … look at all these women here … any of you can be one of those women in a future year.
I want more. I want more for you and I want more for me.
I want a cure.
I went to the website for my local branch of this well-known organization.  It is primarily a fund-raising site … lots of asking for money. The statement is made that 75% of funds raised goes back to the local community, but I see no evidence of that other than these races. In fact, I found this statement on the website:  “Please note that the [local affiliate of national organization] does NOT provide medical services, medical advice, direct funding to individuals, nor do we make referrals.”  What in the world do they do?

I visited the affiliate office to find out. I was told they provide grants to eleven local recipients (most of whom I had never heard of), all dealing with education, diagnosis, treatment & survivorship, screening services and treatment support.  When someone contacts them for information, the office will give them the list of grant recipients, along with phone numbers, for the person to contact themselves.  This keeps the local affiliate out of the referral business but directs the questioner to an organization that may more directly meet their needs.
I think this is great!  Community support is so needed all across the medical spectrum.  This is vital to a breast cancer patient and family members. As all of you know, you didn’t go through your breast cancer journey alone. That community is being celebrated here today!
Just don’t call it “for a cure.”
The website says that 25% of monies raised at events such as these goes to the national organization which, in turn, funds research.  Did you know that only “up to 25%” (It’s closer to 16 - 18%) of the funds at the national level actually goes into research?

Let’s say your fund raising efforts for today’s race raised $100,000.  $25,000 of that would go to the national level and being generous, 25% of that, $6,250, will go to research.  That’s right … only $6,250 of today’s funds will actually go “for a cure.”  Yet, “for a cure” is the major tag line used to describe the services of this organization.

I want more.

I want a cure.
Some might say that I’m just a bitter, old woman, upset with the lot in life that I’ve received.  To that I would say, “I’m not old.”  I’m now 51. I am still younger than the average age of diagnosis, 62.
Bitter?  Most of the time, no.  Some of the time, yes.  At times like these?  Definitely. Like I said, your lives are worth celebrating and the occasional party is a great way to do so.
  But don’t do it at my expense.  Don’t claim these events are “for a cure” when they are not.  They are primarily designed to make women feel good about being disease free. They’re designed to make women feel as if they have passed a rite of passage. I know that cancer has changed you … but is it enough?  Is what is happening today enough?

It’s too late for me.  There will be no cure for me in my lifetime.  One day, perhaps my picture will show up at one of these events as one of the “fallen warriors.”  (I should admit that I hate that term!) 
I’m living a daily miracle.  I’m alive and I believe I live my life with joy. Right now, the cancer is relatively stable.  However, I know this can change quickly and I can be gone from this side of eternity just as quickly.
I want more. 
I want a cure.
I want it for you.  I want it for me.  I want it for my daughter, who, now age 14, must live with the knowledge that her maternal grandmother died of breast cancer and that her mother will die of breast cancer.
Bitter?  No. Realistic?  Yes.  I want so much more than pink parades declaring hope for all. 
I want a cure.
Of course you won’t hear this speech at any rally.  This isn’t what is celebrated at these events.  But, as I watched photos from around the country flood my social network’s newsfeed on Mother’s Day, I was filled with regret.  Regret that my mother would be 77 this year if she hadn’t died of breast cancer 25 years ago.  Regret that my daughter will face future Mother’s Days without her mom. 

While I celebrate all my friends who are cancer-free, I just want the truth to be known.  These races have little to do with a cure.  
You see, I want more than a pink ribbon. I want so much more.
 I want a cure.

(This is the essay that started it all.  It's been edited to reflect May 2014 instead of "this year.")