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I Want More by Vickie Young Wen (Part I)

Project Occupy Pinktober: Throughout the month of October 2014, I am bringing guest posts from people who have been touched by metastatic breast cancer. Breast cancer is not pink and fluffy; it is a killer disease. This is not about saving breasts; it’s about saving lives. Thirty percent of everyone who gets breast cancer will develop metastasis. There is no cure. The goal of treatment is merely to prolong life and reduce suffering. We deserve better. Please like and share these posts to spread the word. Thank you, Knot Telling.

caption logoI’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 months of October. Most of these relays 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 “walking dead” (What’s 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. Women with Stage IV metastatic terminal breast cancer who are invited to speak at these races are told to talk about hope.

Hope for what? Hope for a cure?

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.

Part II is here.

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6 Responses

  1. Tracy says:

    Well said Vickie. A proportion of all women clinically at stage 1 already have distant metastasis so are really stage 4 – a recent article showed this could be anything up to 1 in 20! Misdiagnoses also happened at stages 2 and 3. There are women among us who have hope, think they’re survivors, yet unknowingly form part of the ‘walking dead,’ a group that no-one deserves to be in and whose number is already far too high. Every day that passes is a day we lose more friends and loved ones. It’s high time that changed.

  2. Melissa Ross says:

    You have exactly nailed how I feel about Pinktober, and the general view to push those of us who aren’t surviving to the back, to not face the ugly part of breast cancer, those that are really facing death, those who know they won’t survive. They hide the reality behind the feel good races and pink ribbons because they don’t want to face the reality with us. I guess I can’t blame them, I probably would be no different if I didn’t have MBC. Most people do not want to talk about death. They fear it, and are incapable of facing anyone’s eventual demise, let alone there own.

  3. Lisa says:

    We all want a cure. And I want a prevention for my daughter. I am stage 3, grade 3, er/pr-, Her2neu+++. I will never hear the word cured. They told me this going in. I feel that surviving 10 disease free years is a miracle. But I realize that the chemo that has given me these 10 years is now killing me. I have heart failure and kidney failure because of it. I don’t feel like the 30% chance that I wouldn’t get a recurrence is much of a blessing. I know that my chances of being alive and disease free 10 years from now almost don’t exist. But I’m grateful for the pink rallies and will continue to participate in them. With out them we take breast cancer back into the closet that has allowed it to go on this long. We want a cure and a prevention, But we can’t have that without an acknowledgement of the problem. And those rallies force the acknowledgement. I can’t give you hope, because I can’t give myself hope. But I know I can’t keep working toward the hope, the cure, the prevention that we all need.

    • Lisa, I am so very sorry to hear your story. You have most definitely not had an easy time and I can hear the pain and anguish in your voice.

      My complaints against the pink rallies is that they don’t do anything for your case or mine. They are parties, bring massive attention to breast cancer, but little attention to the fact there is no cure. I do not believe that if the parties stopped that breast cancer would go back into the closet. That’s not going to happen. However, if more and more of us demand that more money actually goes into research, then perhaps our voices will be heard. It’s a travesty that when a well-known organization receives so much money, that so little of it gets funneled “into a cure.”

  1. 4 October, 2014

    […] (Part I of this post is here.) […]

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