Second, Second Chance: the Documentary of Late Effects – Childhood Cancer Survivor and Heart Transplant Recipient: Stephanie Zimmerman, MSN

sscIn my past posts for Treatment Diaires, I have written about kindred friendships and the art of delivering a cancer diagnosis. Today, I choose to write about the change I want to see in this world, in my lifetime.

 

myHeart, yourHands was borne out of a kindred friendship between two adult survivors of childhood cancers whose lives intersected at the corner of late effects, specifically heart failure: one due to chemotherapy and radiation; the other, radiaiton. Co-Founder, Judy Bode sought out someone whose heart had also failed duue to late effects of cancer treatment; someone who had undergone heart transplantation; someone who had lived to see the other side. Thus, our transplant center made the introduction and the rest is myHeart, yourHands history: one coming alongside another facing a similar late effect with the message you are NOT alone; I have walked this path. Now, allow me walk with you.

Late effects of cancer treatment is an ever evolving nonfictional story; late effects are impacting the lives of survivors THIS day, every day. Our organization is concerned that studies show that survivors are largely underinformed about the treatment they received to cure their cancer and the risk they now carry for late effect of those treamtents. In addition, we are concerned by the fact that the primary care providers of today are not adequately equipped due to a lacking in the medical training to care for survivors at risk for these late effects.

Late effects are side effects of cancer treatment that can occur months, years, even decades after treatment has ended. Late effects are a potential reality NOT a written-in-stone reality and it is often time fear lurking in the background seeking to keep survivors under-informed and ill-equipped . Let me be clear, the fear is real and completely normal [and] understandable.

You’ve no doubt heard the motivational quote:  “Be the change you want to see in the world.”

 I am the change I want to see in the world, IN my LIFEtime.

 I am more than a survivor who is well-versed in my treatment history and my personal risk for vaarious potential late effects.

I am a well person with a few chronic concerns, yet living LIFE, full of HOPE and expectation of FUTURE.

I am equipped to educate my primary care provider regarding my treatment-related risks and the recommended screenings.

I am a fierce and effective advocate on behalf of myself.

I am the exception NOT the rule.

 I am the change I want to see in the world.

 MHYH launched an IndieGoGo fundraising campaign two days ago to raise monies to be allocated towards a late effects documentary. We believe this documentary needs to be made. We believe that survivors NEED to step into the reality, the daily lives of survivors as they navigate the waters of late effects. In doing so, we believe that survivors will begin to do the knowledge regarding their potential for late effects; survivors will be empowered to live life boldly in the moment as opposed to living all the while waiting for, wondering if/when the carpet will be pulled out from under their feet.

MyHeart, yourHands can NOT accomplish this project alone, nor do we want to. We need your help to build a grassroots-spread-like-wildflowers movement among survivors, caregivers, family members, and friends who have been affected by cancer to carry this baton. Certainly, we would welcome large donations; however, what is most aligned with an organic movement is A LOT of individuals making small contributions. This makes each of us vested in the project and our collective future health and wellbeing.

We recognize that not everyone will be drawn to contribute financially to this cause. In that case, we would ask your assistance in helping to create a buzz around this campaign by tweeting the campaign, RTing our campaign tweets, and giving your networks the opportunity to share the campaign with their networks. Passion and the buzz factor are the critical elements of a crowdfunding, causeraising campaign.

The more people who are exposed to our campaign content, the more likely it is that our message regarding late effects will reach those individuals with whom this cause resonates prompting them to contribute financially.

If you’d like to formally join our campaign team, please let me know via email at sdzhappy@gmail.com. This will allow us to keep our finger on the pulse of the activity specific to our campaign.

Late effects are far from being a thing of the past: this I KNOW. Life amidst the reality of late effects; however, can be full of hope and future, if only survivors were adequately educated and fully equipped to be their own best advocate.

Contact us and let us know how you’d like to contribute to this campaign be it content and link sharing, a fundraising event, an email to family and friends or a tax deductible financial gift.

Stephanie Zimmerman is the executive director of myHeart, yourHands, a 501(c)(3) tax exempt organization, dedicated to educating and equipping survivors to dismantle their fears and do the knowledge of late effects.

Join us for Treatment Diaries weekly #treatdiarieschat on 9/3 at 8pm ET to learn more and follow us and BE the change YOU want to see among survivors:

  1. IndieGoGo [http://www.indiegogo.com/projects/second-second-chance]
  2. myHeart, yourHands on twitter @myHEARTyrHANDS [https://twitter.com/myHEARTyrHANDS]
  3. www.facebook.com/secondsecondchance
  4. Google + [https://plus.google.com/b/114777298382235456783/114777298382235456783/about]
  5. Vimeo [www.vimeo.com/myheartyourhands]
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