Friday, October 14, 2011

BREAST M.A.P.

To survive the disease is not to be cured of the disease.  Survival comes at a price.  It's not possible to cut away body parts or poison the blood without some sort of ramification somewhere down the road.


The scars are a visible reminder of what was cut away.  My previously organized office and my inability to stay focused are a reminder that poison takes its toll.  And then, there is the downplayed, often ignored and rarely even acknowledged long term emotional aspect of survivorship.  There is an element of guilt that accompanies the "I survived" while someone else fears death.  There are feelings that are ignored rather than stared at head on.  Ignoring the feelings creates fertile ground for anger and depression.  And FEAR.


I've had a low grade fever on and off for the past two weeks.  I know exactly what is wrong with me. And I will be getting proper medication for a silly infection.  The thing is..... I know too much.  And I know about the poisons used and I know the risks associated with some of those poisons.  This fever?  I've ignored it and explained it away and I KNOW it's nothing.  But, cancer changes the landscape of life.


An "on and off" fever?  For two weeks??  Talked myself off the ledge twice in as many days. "Suppose it's leukemia?" Logical AM knows this is so far out of left field but just like CB can derail an entire day with just one small snafu, a lingering fever?  Leukemia.  And, now that I've given myself a headache THINKING about this, I definitely have something going on in my brain.  Equally idiotic. Cancer changes everything.  And it IS that simple.


It's Game On as explained in this article because some of us would prefer to not wear the smiling, pink bandana wearing, sneaker walking, balloon holding rah rah rah face 24/7.  We'd like the "luxury" of not wearing the happy pink face every once in a while.  We are HUMAN.  If you won the pink ribbon and are a survivor, the only acceptable thing is to smile.  All the time.  I smile and laugh MOST of the time, but jeez, there are moments and now I have to feel guilty over my feelings, too. Some of us have done that throughout the entire time of our illnesses and some of us are now supposed to be well rooted in survivor mode but if NONE of those fears or feelings were addressed, and I mean EVER addressed, they are going to pop up sooner or later.


The Wall Street Journal article is about the results of a study in which I participated and it's a study that anyone may join. I'm pretty thrilled to say I was in this thing from the very beginning.  The results of the first batch of surveys were just published and yay, validation.


And, there's something very weird happening.  Today, I am at an Army of Women event.  About a dozen of us hold the same volunteer role in various parts of the country.  Can I get someone to calculate some odds for me?  I am in NY and one of the other women is in LA.  How is it that we were BOTH participants in this inaugural study of just 1043 breast cancer survivors.  Seriously?? And, three thousand people from ALL over the world on an April Cancer Care Chemobrain webinar?  Both on that, too!  And now, we just met because we are both actively involved in Army of Women????


I love coincidences!  Takes my mind off stupid stuff, like imaginary diseases.





5 comments:

  1. Thanks Debbi for fwding AnneMarie's blog!

    Finally another voicetress survivor speaking truths!!!!

    Yay!!! Keep it coming AM, congrat's to here you are on board with AOW. I joined 2 mths ago, I am totally fired up that I finallyyy have come across a movement that I feel needs to be front & ctr in the search for a CURE!

    It's not just about fundraising, wearing pink apparel or shouting out our survivorship! It's about educating as many as possible about "pinkwashing" corp's linning their pockets as they pull on people's emotional strings just so their pockets can get fatter!

    I am all over AOW Panera Bread events in hopes that we can make strides towards what is the CAUSE of this sneaky disease!! A CURE is out there we need to by pass all the corp. Profiteers so we can get to studies that will shine light on the causes of this "silent" killer.

    We need more survivors like you & Debbi K.

    Check me out @ The Brea Breast Cancer Survivor Meetup Group.

    God bless & keep your face towards the light :)

    Denise Paciorek
    8 yr. B.C. Survivor

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  2. Wow, Denise!

    Thank you SO much for your note and I did just detour over to your group. I love the whole thing. I don't even know how to express what has gone on in my life in just a few short months.

    Having just walked in from my first AOW event, I am elated! The girls who came to help are new friends, Deb is a new friend (although, I'm still wondering if we may have been separated at birth with these coincidences) and now, you are, too.

    The twitter gang is awesome, too. I feel like a whole new world opened before my eyes and I'm finally where I am "supposed to be" in my life. I want to be part of the face of change and I believe that we can and WILL do this. We are well on our way.

    Very glad to "meet" you...

    AnneMarie

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  3. As you know Beth...I am at the beginning of my journey.
    Cancer changes the landscape of life Period.
    I don't think a minute goes by that I don't think of it.
    Does anyone REALLY know that? I doubt it.
    All my family and friends tell me how strong I am...Even my primary care physician :( I'm not strong at all....what choice do we have???

    I know as time goes on the cancer will be less on my mind...until I get that fever..that ache or pain. Then it will be the what if's?
    Our lives have been forever changed. I don't like THIS new normal
    And I know I'm not going to like the new normal in the future.
    The statistics of us making it...Surviving are better THEY SAY....All my friends and family tell me this....

    BUT they just don't know how bad the stats are twisted , and how DCIS is now included in these stats even tho the experts even question that this is a true cancer . Thank God IT IS 99% curable....But throwing that in there the stats really seem Bright. When in truth they may not be any better then they've been for the last 20 years.

    As I said..I am new to this..and am still learning.
    But it's just not as "pink" out there that most people seem to think. We are always waiting...just waiting for the next test...ct scan, Bone scan to drop the other shoe.
    Love your blog. Was real sick my first chemo..then ended up in the hospital with a slight case of pneumonia. So I am just getting to catching up with my bloggie friends.

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  4. I am so laughing here AnneMarie.
    I dont know WHY I called you Beth...

    Dont feel bad..My poor sister came all the way from NC to Ohio to take care of me and was called "Jen or Manda" my daughters name the whole week after chemo.
    I am now seeing what you mean by "chemobrain"
    Sorry about that..lol

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  5. Debbi!

    Beth is a good name!! I'm still catching up on my reading, too. I am going to make my way around over the weekend to say hi to everyone on their blogs....

    Yes, stats are skewed to present the point of view of whomever is trying to "prove" their point. As for everyone telling you how strong you are.... If I hear ONE MORE TIME about my "broad shoulders" I am going to bite someone's head off AT THEIR shoulders. People think they are doing you a favor saying things but we take it as an expectation. Then, I feel guilty for failing to live up to that expectation. Hence, guilty for our feelings as if we needed to add another negative emotion into the mix of a cancer dx.

    I am so sorry you keep getting knocked around by this cancer crap. All I can say is that I support you. I support you. I support you. If you want to feel like crap, if you want to feel deflated, if you want to feel glorious..... whatever you feel... JUST feel it... and speak it. If not to the real world, speak it hear. We all Get It.

    xoxoxo
    AnneMarie

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