Thursday, December 22, 2011

THEIR SIDE...OUR SIDE.....& THE TRUTH

There are three sides to every story.  Not an unfamiliar statement to most.  Me?  The person from whom I heard those words:  My Dad.  Many of us will celebrate these holidays still saddened by the loss of loved ones and again, I say, I miss my dad. So. Much.

This may not qualify as a "story," but nonetheless, it does have the requisite "Three Sides."  Here goes, the three faces of "Prevention Is The Cure."  Their Side, Our Side and The Truth.

Their Side:  There are things we can be doing to reduce our risk of cancer.  I'm not going into a dissertation.  Most of us know what we should be doing.  Some of the information is conflicting and the bottom line?  DESPITE doing everything right, people will get cancer.  I didn't understand why someone tweeted such disgust over hearing "prevention is the cure." Now I get it.  Some of us are subjected to insinuations that a breast cancer diagnosis was the result of something we did or something we failed to do.  That somehow, WE should have been able to prevent the disease and our cancer is our own fault.  It's your diet, your alcohol intake, your lack of exercise.  And even if our choices were less than stellar, do we REALLY NEED to hear that in a time of utter terror anyway?  A word of advice to friends, family and anyone else who thinks it's appropriate to make these comments, if I may?  S.T.F.U. REALLY, not appropriate.  Sensitivity training is in order.  We do ENOUGH to beat ourselves up at diagnosis, during treatment and in the years that follow.  Personally, I suffer survivor guilt when I see those who are in treatment for metastatic disease and my ONLY "real" problem is that I feel like The Scarecrow.  If I Only Had A Brain.

Our Side:  To the cancer patients who feel that the catchphrase "Prevention Is The Cure" is simply an extension of being guilted out by the medical community or by some of the organizations and researchers working tirelessly to help us, this is not simply more people laying the responsibility for a cancer diagnosis at our feet.  When THEY say this, they are not preaching lifestyle or asking, "What did YOU DO to develop your cancer?"  The statement means exactly as it reads.  The way to CURE breast cancer is to PREVENT it in the first place.  A cure is needed for those living with the active disease or surviving with NED (no evidence of disease) and the research, in my strongest possible opinion, should be focused on curing and then repairing the damage done in the quest for NED.  In my case, I'd like my old brain not that it was such a fabulous brain but it's damn frustrating to KNOW the difference between what was and what IS.  Yes, I'd like my old brain back.  I'd like to ditch those words, "new normal."  I'd like to stop freaking over every pain that lingers for more than ten minutes and I'd love to lose the need for ongoing and constant follow-ups with doctors.  I'd like the researchers to study in earnest to figure out WHY some of us develop breast cancer.  In finding out why, they will be taking a giant leap toward figuring out HOW to prevent this disease in future generations.

The Truth:  The National Cancer Act was signed on December 23, 1971.  Happy Friggen Birthday.  I wanted to be the first to say Happy Birthday so I'm a day early.  FORTY YEARS AGO.  Officially, Day One in The War on Cancer.  This pisses me off in ways I can't begin to describe.  How much did you accomplish in your lifetime, National Cancer Act?  Still living with mommy?  Typical Underachiever.  AND, not for nothing, but thanks to The Pink Thing, I'm guessing there have been MORE dollars thrown at that pink ribbon than at any other cancer.  Going for drama..... probably more money thrown pinkward than all other cancers combined?  No need to tell me if I'm wrong I'm making a point, punctuating it with a bit of dramatic effect (poetic license if you will).... can I ask you just go with it please?

It's time to shift everything.  It's time to shake things up.  It's time to understand WHY.  It's time for real change.  It's time to change the stupid status quo.  More poison?  Newer poison?  Better plastic surgery techniques?  New drugs to counteract the effects of the poison?  More targeted radiation to prevent damage to perfectly healthy tissue?  More effective creams to help with those radiation burns?  Specialized areas of mental health to deal with the fallout that begins with those dreaded words and continues for a long time post active treatment?  THIS is a giant waste of money and talent.  Just My OPINION.

Bottom line.  Despite billions of dollars and decades of research we are still being mutilated, we are still losing our hair, we are still throwing our guts up, we are still developing awful sores in our mouths, we are still suffering with lymphedema, we are still dealing with PTSD.  We are just dealing with it a little better.  Supposedly.  Personally, I hate throwing up whether it's a violent and sudden projectile thing or that tingling feeling in my jowls that has me sitting on the floor of a bathroom all by myself within the chemo suite because I knew I would not make it to the exit of the building without making a mess somewhere in the lobby.

This day. Early afternoon.  January 16, 2007.  I did a quick assessment as I faced doors number one and two.  I didn't want to draw the attention of a patient still being poisoned or an oncology nurse who was needed by said patient, in that particular moment, more than I needed her.  Vomiting assistance is only required when you need a friend to hold back your hair if you get what I mean.  I wasn't wobbly on my feet and I was perfectly capable of handling the hair situation (and fyi-The Truest Test of A Real Friend, I mean really.... think about it....)  I just wanted to get it over with already.  That jowl thing was getting pretty persistent.  In front of me, the door leading out of the torture chamber to the outside world.  To my left, the bathroom. Decisions, decisions.  I decided. "Left."  And there I sprawled.  On a cold tile floor.  Leaning over what I hoped was a pristine, germ free toilet.  Nauseous, crying and waiting to hurl the contents of my fairly empty stomach.  Ten solid minutes. Countless dry heaves. Several hurls.  All Alone**.

Is is appropriate to be Debbie Downer right before Christmas?  Yes.  People will die.  The Grim Reaper doesn't check the calendar before deciding that will be The. Last. Breath.  As long as that is true and many will die over this weekend, I'm not Debbie Downer.  I'm Realistic Rita and Bitter Better and Activist AnneMarie all rolled into one.

Can we all get on the same page?  2012.  I'll be making noise.  That's My Promise to myself-My Holiday Gift to me and to my daughter and to women everywhere.  I am still figuring out how to shake things up but I am persistent, I have some ideas and my new OCD ChemoBrain adds to that persistence.  The Upside to My ChemoBrain.

The National Cancer Act?  Little more than words on a (several) page(s).  That may be my springboard.  And to think....... I got The Good Cancer.  I had The Mild Chemo.  I Got a Free Boob Job.  I am In Remission; And the TOTALLY misinformed might insist I am Cured.  How awful for those not nearly quite lucky.


***All alone.  Not being a martyr.  Hated company during chemo.  Being alone was by choice.  My choice and I lied to quite a number of people about who would be taking me for that particular poisoning. Everyone who asked was provided with the name of someone they did not know and could not "check with" to see if they could "split the shift."  Specifically, that is to YOU mom..... dispense with the guilt and remember, your hands were full at the time.


There WILL be a Happy Happy Joy Joy entry up tomorrow.  Just had to get this off my chest.






14 comments:

  1. Anne Marie,
    I believe you just wrote what countless number of women are feeling and have felt. I was so sick and tired being preached to about Prevention. If only you did this, maybe you should do that and if you had done all of the above you wouldn't be here now. I'm not one to use profanity a lot but STFU is more than appropriate. We already have this inner fear and panic let alone guilt taking over. With the continuous barrage of well meaning advice from well meaning friends and family is it any wonder why we also suffer from PTSD? I don't drink I don't smoke I love my veggies OK OK I admit I don't always exercise.. I still developed Breast Cancer. Bottom line you can do everything right still things go terribly wrong. This has been my biggest bone of contention, walk a few steps in my shoes, it doesn't have to be a mile..Then again I don't wish this on anyone. At one point I felt as though I needed to apologize for having Cancer. 2012 is going to be a whole new game!! Physically I am still having far too many side effects.. duh! Chemo brain kicks in when I'm tired.However going into my 3rd year..Don't expect me to sit silently while "YOU" (generally ill informed people) feel I need to be reminded of prevention..

    Have a Great Holiday Anne Marie, so nice to have met you :)

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  2. Alli,

    Thank you for taking the time to share your feelings with me. I was at your blog yesterday and am still catching up on your story but I am glad I found you, too.

    Prevention IS the cure but lifestyle change is not the path to REAL "prevention" ... THAT will come when science figures out how to stop a cancer cell from triggering into the disease that we (all of us with breast cancer dx's) deal with for the rest of our lives. I so appreciate your validating comment, Alli and thanks again for taking the time to share it with me.

    You have a great holiday, too..... I agree. 2012. We are gathering steam and I set my expectations high.

    Best to you, my friend,
    AnneMarie

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  3. AnneMarie, you know my story! I was living a healthy life at 27, and don't have the breast cancer gene mutation...why did I get cancer? I may never know, and there's no way I could have prevented it. Looking forward to the Happy Happy Joy Joy post!

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  4. Hi, Anne Marie, I'm so pleased to meet you today! I appreciate this post sooooo much.

    My mama died of metastasized breast cancer on Oct. 23, 1971... 2 months before that Cancer Act was signed... before there was the technology that there is today (that may or may not have saved her life or might have even made her dying more comfortable)... before there was all this pinkness that makes me think of a huge Pepto Bismol spill... before I even had a chance to really get to know her AS my mama. Fast forward to now and I have a lovely stepmom (she married my dad in December 1985 - it took him that long to let another woman into his life)... a wonderful dear woman who found out in the summer of 2010 that she had breast cancer... and who now is also dealing with the possibility that the cancer has metastasized. My stepmom has tried to do all the right things, and yet, here we are with her having brain and spine MRIs and other tests being done this morning. I can totally relate to Debbie Downer because I think right now I'm Diana Depressed (I have my own health issues AND I am caregiver for my disabled husband). I've been following the #BCSM on Twitter since it began, and I've read tons and TONS of (breast) cancer research articles and related items over the past 40 years (FORTY YEARS since my mama died)... and I'm furious that I see no real strides in getting a grip on this thing. I'm not good at putting into words the things I want to say in relation to the problems that exist on this subject, so I applaud and support the folks, such as you, who ARE able to do that. THANK YOU, dear, for saying what a lot of patients - and their family members - are feeling and thinking.

    Blessings and good wishes to you for Christmas!

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  5. Diana,
    I am so glad to meet you today, too. Reading your post brought me to tears. I'm sure you will mourn for your mama for the rest of your life. I can't even imagine how your dad must feel-it's got to be like walking backwards into his own nightmare. Thank you for sharing your story. This is PRECISELY why I felt I had to write this. Your own life experiences tell the story-complete with the actual dates. I was irate when I realized my mom and I had the same basic treatment (if this is your first visit to the blog, go to the October 26th entry which shows the differences in treatment). It has to stop. It's time for everyone to get on the SAME bandwagon. That's how it will happen. THANK YOU for such kind words.

    I wish you a peaceful Christmas.

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  6. Hey Ginny,
    I didn't mean to lose you in this mix.... I'm actually still laughing at Button Blog Envy.... We have to start a movement. NO MORE CANCER.

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  7. Wow AM, I think cancer is going to be sorry it ever knew you. Our voices are getting louder and stronger by the minute. Here's to another year of truth-telling, shouting and most importantly friendship. So glad to know you. Rach ;)

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  8. Rach,

    Your words were possibly the greatest Christmas gift EVER and what a fantastic way for me to officially step into the 48 hour "Christmas Sprint." Yes, this disease has touched too many in my immediate family and my extended family and friends and now, my most precious group of new friends. I'm glad to have found the right place to add my voice and I am truly thrilled to call you my friend.

    AM :)

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  9. You're great, AnneMarie! Thanks for being an impassioned voice for all of us!

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  10. Thanks, Idelle! I know other areas of my brain are compensating for the parts that are still an issue. Maybe part of my brain that stepped up was the ability to actually ACT on the things that I believe to be so wrong. Sometimes I do say to myself, "WHO ARE you?" And then I realize, I am enjoying this side of my personality. I'm not grateful for chemobrain but I am certainly thankful the abilities that became SO bad I was forced to find something else to do. This is Something Else. And this is exactly where I am supposed to be!

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  11. AnneMaria -- I'm so glad I stumbled across your blog posted on twitter. I'm newly dx -- Nov 28th, 2011. 44 -- no gene, no family history, love veggies, good food. As far as exercise... I ran track and taught aerobics throughout the 1980's and 1990's. And yet... what I've been reading is that maintaining a healthy body weight, exercise, and healthy diet are the best ways to prevent BC. OK... really. Not so. Obviously for many.

    And why women think if they get that yearly mammo, they will prevent it? The mammo detects it --only if you're lucky. My mammo in mid-Nov came back detecting nothing wrong 1 week before an US/biopsy found ca. Had a mammo and US last year too --- didn't find anything even though I had it then. Might've been stage 1 instead of 2 had it been found last year.

    It feels most like we are all sitting ducks for this... no matter how much carrot juice you drink. Might as well enjoy that margarita.

    Thanks for sharing your feelings.

    Shera

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  12. Shera,
    Thank you for reading this and thank you for taking the time to share your feelings with me. Feeling we are somehow to blame for our breast cancer is an emotional maelstrom for so many of us. I am sorry you are now in the club. Know there is an entire twitter community using the #bcsm ready to jump in and support you.... any questions, ANYthing..... Reach out to those who have been there before you. We can offer the practical tips. Best to you and I hope you will stay in touch. I'm following you on twitter!
    AnneMarie

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  13. I would love to use this as a guest post on my on cancer blog.
    Please let me know if ok. tapleger@juno.com

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  14. Tammy,

    I will email you but I am honored that you want to do that! Yes, it's absolutely fine to use this as a guest post.

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