I want more

Im always conflicted when I see my friends post photos from participating in a well-known relay 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 its 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 organization, Im not a survivor. While they fill their platforms with women sharing their stories,
people like me are seldom invited to do so. There is the occasional walking dead (Whats the opposite of a survivor?
Someone who has died.) giving a presentation, but they are carefully vetted with lots of conditions given as to what
she can say.

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.

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 its true that once you hit
that five year point, the chances of recurrence are lower, its 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 dont 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 survivor lap, the camaraderie puts you into a special atmosphere of survivorship that
others are hard pressed to understand. Its all good, but for me, its 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
cant take the victory lap because they didnt survive. Or 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 someones shirt. I dont want to be honored
because Im dead.

I want more.

I want a cure.

I was diagnosed with Stage IIIb breast cancer in February 2012, just before my 48
th
birthday. While
being diagnosed with breast cancer wasnt 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 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 and 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. 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.

I didnt do anything wrong to develop Stage IV breast cancer. And the opposite is true for you you
didnt do anything right. As much as wed like to think otherwise, we are not in control of how our
bodies respond to treatment.

These relays are meant to encourage and to cheer and Im 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. Of all the people I know with
breast cancer, I havent met a single one who has received personal assistance from them. The
website 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 relays.
I see that 25% goes to the national organization that funds research. But did you know that only 16%
of the funds at the national level goes into research?

I want more.

I want a cure.

Lets say your fund raising efforts for todays relay raised $500,000. $125,000 of that would go to the
national level and of that, $20,000 will go to research. Thats right only $20,000 of your funds will
actually go for a cure. Shocking, isnt it?

I want more.

I want a cure.

Some might say that Im just a bitter, old woman, upset with the lot in life that Ive received. To that I
would say, Im not old. Im 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 this? Definitely. Like I said, your
lives are worth celebrating and the occasional party is a great way to do so.

But dont do it at my expense. Dont claim these events are for a cure when they are not. They are
primarily designed to make women feel good about being disease free. Theyre designed to make
women feel as if they have passed a rite of passage into a new world. Your world is new I know
that cancer has changed you but is it enough? Is what is happening today enough?

Its 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!)

Im living a daily miracle. Im alive and Im doing fairly well. Right now, the cancer is 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 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 wont hear this speech at any rally. This isnt what is celebrated at these events. But, as I watched
photos from around the country flood my social networks newsfeed on Mothers Day, I was filled with regret. Regret
that my mother would be 77 this year if she hadnt died of breast cancer 25 years ago. Regret that my daughter will
face future Mothers Days without her mom. While I celebrate all my friends who are cancer-free, I just want the truth
to be known. These relays have little to do with a cure

I want more. I want so much more.

I want a cure.