Friday, September 21, 2012

STOP THE MADNESS---IT'S STILL SEPTEMBER

I am not a bully.  Mostly.  There are times I might attempt some strong arm tactics but it's usually in a back door kinda fashion.  I'm just not the bullying type.  Sadly, I got the bully cancer.  C'mon.  This isn't breaking new ground.  We all know that our pink fatigue can, at times, translate to pink DISGUST for those who were diagnosed with cancer.  Any cancer.  Just not breast cancer.  I've participated in volunteer meetings where this topic was discussed.  I've talked about this with others.  In fact, the other night, someone left a comment on this blog.  I agree whole-heartedly:

What makes my blood boil is there are so many cancers and it is insulting to other cancer patients that breast cancer gets all the attention. Because its breasts!

September is awareness month for many cancers.  NOT breast cancer.  Yet, we're all geared up as we've seen in the past couple of posts.  I have come to befriend an woman who was a childhood cancer patient.  We met on twitter and it was partially because she was very interested in the ongoing mention of #FearlessFriends.  Those of us in pink align ourselves as fearless friends beside our sisters with Stage IV disease.  For EVER. Fearless.  Making Noise.  I want to share this fearlessness.

Stephanie Zimmerman is one of the founders of an organization called My Heart Your Hands and Stephanie's story is one everyone should hear.  I am a volunteer at a cancer hospital.  The pediatric patients have their own floor, their own world and that floor is OFF LIMITS.  If you aren't a patient, a parent or an employee on that floor, you need a damn good reason to get through the doors.  The children are well taken care of throughout their treatment.  I know they do the same at St Jude's and I'm sure similar models are in major cancer centers and hospitals all over.

Childhood cancers are the cruelest cancers of all.  ONCE, in all of the time I was in the hospital, did I encounter a child in treatment.  This image was burned into my brain.  Pushing a baby in a stroller, cradling a toddler on her hip and holding the hand of a little girl donning a mask and a cap, I can still hear the soft cries and this mom soothing one of those children. I don't know how she happened upon that particular scan area, but THAT mom?  I can still cry when that scene pops into my head.  Another one I will take to my grave.  Ending the week, apparently, the same way it began.

September is Childhood Cancer Awareness Month.

I'm turning this over to Stephanie, in her own words, to tell her own story about what it's like to be a cancer patient at the ripe old age of EIGHT.  It's what happens afterwards.... long after the cancer is cured (they do use that word).  It's a reality that must be shared and it's why we must insist on better research across all cancers.  We must let people know the importance of participating in clinical trials and research studies.  We must honor those who FEARLESSLY choose to donate their organs.  And it's why I am a #FearlessFriend Now Too, to Stephanie and to all who walk this path, this MOST difficult path.


MyHeart: NOT my Own

Let me begin by saying that I am an ordinary wife and mom doing life in the metro Atlanta area, but my life has been extraordinary. Even so, you will find that I am more like you than not as you get to know me. 

I was diagnosed with Ewing's Sarcoma, a rare form of childhood cancer, at 8 years of age when cures were not thought possible, especially in children. My parents were told that I would likely die within 6-12 months; however, they were offered treatment as part of a clinical trial. Believing they had nothing to lose yet everything to gain, my parents agreed to enroll me into a prospective, randomized clinical trial investigating dosing and scheduling of the chemotherapy.

I completed 21 months of treatment comprised of 30 radiation treatments to my left chest and chemotherapy consisting of Vincristine, Cytoxan, Actinomycin-D, and Adriamycin.

To my knowledge, I remain the sole survivor of a study that has been instrumental in determining today's best approach to the treatment of Ewing's Sarcoma in the child diagnosed today in 2012.

During my treatment days, I found myself desiring one thing, the company of a fellow traveler. In a day where cures were not common, such fellowship was not readily available. Compelled by that desire, I chose to enter into clinical practice first as a bedside nurse, then as a nurse practitioner serving children and families facing childhood cancer.

I believe that my lived experience enlightened my clinical practice and the children and families I cared for were well served by the fact that I was a survivor of childhood cancer though it was the few who were privy to my medical history.

My life story includes marriage to my college sweetheart and the birth of our son who quite candidly is the child I was told I would never bear.

The reality is that cure[s] do not come without consequence[s].

The treatment that I received left significant and irreparable damage to my heart, lungs, musculature,  my shoulder girdle, and my left chest wall.

In particular, the combination of chest radiation and Doxorubicin damaged my heart's ability to “squeeze” blood to the rest of my body while leaving my left lung fields “whited out” with fibrotic/scar tissue. I have a significant curvature in my spine due to the unilateral radiation of the tumor bed, my shoulder girdle is deformed due to damage to my collar bone such that it rotates inward and forward causing 'winging' of my left shoulder blade, and my chest wall underdeveloped and collapsing the upper lobe of my left lung.

I read that paragraph and I sound like a living, barely breathing, contorted train wreck. Truly, I am not.  I am attaching a picture to prove it :)

Our son, a babe I was told would never be because my heart would not be strong enough is our joy boy. He's lived a lifetime in 9 years filled with one trial after the next, yet his joy is abiding because it is not grounded nor dictated by circumstance. Amazingly, my heart functioned normally throughout my pregnancy and only towards the end of my term did my lung capacity diminish, yet despite the challenges, we welcomed our son to LIFE in April 2003. My heart spit and sputtered with the post partum diuresis that takes place, but was managed medically and I bounced back to normal. Normal in my world is likely abnormal in your world. Essentially, my heart function bounced back to 30%, my normal, compared to 60-65% most people's normal.

It was in 2006 that I was counseled that my heart function was slowly declining and the recommendation was made that I undergo valve repair surgery in the hopes that my heart muscle would then be able to function at a higher level.

I underwent that surgery in 12/2007 at the Cleveland Clinic in Cleveland, Ohio.

The surgery was successful in restoring the heart valves to optimal function; however, I did not recover as my heart muscle became nothing but a flutter with about 5% squeeze in early February.

By mid-February, my body became refractory to medical therapy and we learned that my case for transplant locally had been declined. I was admitted locally for the last time in mid-April with end stage heart disease one week away from evaluation for heart transplantation at the Cleveland Clinic.

Life-flighted to Cleveland on 4/19, submerged into a coma, then placed on ExtraCorporeal Membraneous Oxygenation support and listed with UNOS** as a status IA [life expectancy less than 30 days], I received the gift of an opportunity at continued LIFE through the death of a 17 year old young lady who checked “yes” at the Department of Motor Vehicles.

Today, I find myself once again compelled to give of my heart, my LIFE into the hands others that they might take heart and glean some benefit as a result.

This life I will live is full of hope and future and inasmuch as my heart is not my own, neither is my life.

To that end, I have joined hands with Judy Bode who lives the daily reality of a heart now failing secondary to radiation therapy used to cure her of Hodgkin's Disease as a child in the founding of myHeart, yourHands Inc.

Our battle cry is late effects of cancer therapy.

myHeart, yourHands is a not for profit aimed towards raising awareness regarding the potential late effects of cancer therapy among ALL cancer survivors and the frontline healthcare providers charged with their care as well as to inform the population at large about the critical need for registered organ donors.

I invite you to visit us at www.myheartyourhands.org and I thank you for your thoughtful consideration of our stories in relationship to your network.

Simply
Steph

**AM here, back with more info---


UNOS?  United Network for Organ Sharing


Clinical trials?  ClinicalTrials.gov is a good place to start


Late effects of cancer therapy?  I can make a joke about my worsening chemobrain..... or I can let Steph's words stand alone.  People are in dire situations from the treatment that "saved their lives."

It's no joke.  We simply MUST do better. 

BE A #FEARLESSFRIEND








12 comments:

  1. AM this is *very* powerful. Going to check out your links now. Thank you, as always, for sharing. xoxo

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    1. Thanks, Renn.....

      Stephanie is a very special woman and I'm so touched that we crossed paths.

      xoxox

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  2. Thank you so much for posting Stephanie Zimmerman's story. Reading her story, which she tells so simply but has involved so much trauma, is humbling on so many levels. I appreciate your writing about this, AnneMarie.

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    1. I'm happy that you read it and that you shared your feelings here. When I connected with Stephanie, it seemed like there was a "disconnect" within the cancer community (how I hate that concept but I don't know how to describe it any better).....

      Steph's story is truly miraculous and she is determined to take her situation and raise awareness..... so that others may learn.

      Selfless and beautiful....

      Love to you, Idelle.

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  3. dear annemarie,

    this post is filled with so much "meant to be". stephanie's story should be a movie, one the whole world would benefit from seeing. though she has triumphed over unimaginable suffering on so many levels, the many messages within that story compells us to remember that it is not the NAMES of cancer so much as it is the universal aftermaths of ALL cancers that can benefit from fearless friends, myheartyourhands, and unos.

    stephanie, dear, it hurt my heart to think of how alone you must of felt at 8 years of age, not knowing anyone who was going through what you endured, to share feelings, thoughts, fears, and hopes with. as i continued to read, i felt such a huge range of emotions and ended up with tears streaming down my face. they ended up being tears of gratitude and joy to know you LIVED, and dedicated a huge part of that lovely heart to making sure the people you cared for knew they had such empathy and support and love from a fellow traveler. now you have teamed up with judy and have given us all something so valuable - a place to go to become empowered to help add our voices to your battle cry. my wish for you and judy is for all the love, concern, and care that you have lavished on others comes back to you many thousand-folds. i am a hospice nurse and had that wish given to me when i was diagnosed with ST IV metastatic breast cancer - and guess what? - it all came true!

    annemarie, thank you so much for bringing us stephanie's story. what a gift of hope and inspiration. and i loved that you included the photo of stephanie, her husband, and that beautiful little "joy boy"!

    love,

    karen the commentor

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    1. Dearest Karen,

      I don't think I knew you were a St IV patient until this comment. If I did, I filed it and it's lost in my short term memory.

      Your words, all of your words are beautiful, but what means the most to me is what you say in the very beginning. The aftermath of all cancers and the benefit of having fearless friends. THAT is how Stephanie and I made our first connection and like the connection I have come to cherish with you, I know cherish Stephanie, too.

      Karen... your words, your comments, have given more life to each post and for that, I thank you from the bottom of my heart.

      With Love,

      AnneMarie

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  4. This is so beautiful and moving. Stephanie's story is incredible and her resolve is amazing. Thank you for bringing her story to us and reminding us that cancer has so many faces to it. I am hoping to see a cure for breast cancer because I believe if we can end breast cancer we can continue to end all cancers. There is so much work to be done ahead of us. Thank you AnneMarie for this incredible post.

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    1. Oh Susan,
      Yes, we have much work to do and I agree with you... once we begin cracking the shell, we will make progress in all areas. I love that you are such a strong advocate. I stand proudly beside you!

      xoxox

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  5. Wow I have a lot of catching up to do....What an amazing story I am so glad I had the opportunity to read
    I am loving Paris married life so far has really been wonderful
    I will write about my experiences tomorrow
    love Alli XXX

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    1. ALLI!!!!

      What can I say to you... THE bride except that I am sending you all of my love. Your life and especially what is happening now has been one of the moments of true joy that I have experienced through this blog and making so many new friends.

      Love and HUGS...

      xoxox

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  6. dear annemarie,

    i just returned from our vacation, the one i mentioned just before we departed. now i am catching up with your blog, and feel so touched at your response to my comment about stephanie's story. it means the world to me to be able to lend any measure of support - to you, to others like stephanie, and to the causes you and your fellow bloggers champion on behalf of us all. even though it isn't feasible at this time for me to have my own blog, having the chance to be a fearless friend to others by way of commenting on so many personal stories and the issues raised that center on what we all truly yearn for, helps me so much. since my husband, hugh, was diagnosed with multiple myeloma in 2009, followed by my diagnosis of ST IV metastatic breast cancer in december, 2012, i have found i have much to relate to on so many levels. though we both deal with living in the reality of having 2 incurable cancers, both of which have become elevated (?) to chronic cancers, we find incredible strength and purpose in reaching out to give validation, support, a kind word of encouragement, and even sharing comiseration and outrage at the lack of sensitivity on the part of those who minimize the feelings of the universal suffering imposed on lives that have been, in the blink of an eye, altered forever. thank you so much, darling girl, for allowing us to be part of your forum. you do so much to educate and inspire us all, to keep hope alive, and more than that, you provide so many ways to get involved - do what we CAN do! in my book - that's HUGE. and just let me say - your wrestling with chemobrain? - oh, dear! i was going to say something amusing and a little pithy, but now i've forgotten what it was. bleck. anyway, i am here for you, a fearless friend, whom i cherish with all my heart.

    love and warm hugs...

    ktc (karen the commentor) xoxoxoxo

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    1. Thank you, ktc....from a most grateful AM....

      The reality of your life truly is the biggest part of what drives me. I despise the word "incurable" in ways I can't begin to express. That both you and your husband were diagnosed in the blink of an eye is something that feels so unjust and unfair. The only thing that keeps me centered is the realization that there are things over which I have no control......AND, that where I CAN act, I should and I will act. That is what drove me to DC to sit on the review panel. RESEARCH RESEARCH and more RESEARCH....

      I DO have your back. In whatever small way I can ... I have your back....

      Much love,

      AnneMarie
      xoxox

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