Profiles of Sarcoma: Stephanie

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This photo (left) shows Stephanie with her family

This month we were lucky enough to get in touch with Stephanie Zimmerman, BSN, MSN, Executive Director of myHeart, yourHands. Not only does she run myHeart, yourHands, an excellent organization dedicated to ” … cultivating HOPE, FUTURE among survivors of cancer by raising awareness about potential late effects of cancer therapy,” but .she shares a special bond with many of us because she is a sarcoma survivor. Stephanie tells us more about myHeart, yourHands and how she got to where she is today.

 

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Eric D. Davis Sarcoma Foundation (EDDF): Tell us about myHeart, yourHands

Stephanie Zimmerman (SZ): myHeart, yourHands Inc. is a 501 c[3] charitable organization borne out of a kindred friendship between myself and Judy Bode (in photo). We are both adult survivors of childhood cancer whose hearts have failed as a result of the DSC_0164radiation and/or chemotherapy necessary to save our lives as children. We are not unique in this experience. In fact, heart failure is emerging as one of the most significant and life-threatening late effects of treatment regimens that include chest radiation and/or the use of anthracyclines such as doxorubicin [and] cardio-oncology programs are rising up to address this potential late effect because no one should survive cancer only to succomb to heart failure later in life.

That being said, MHYH was established as a vehicle to raise awareness regarding the potential late effects of cancer therapy, thereby equipping survivors to take ownership of their treatment-related risk, their health [and] wellbeing. Show me an INFORMED survivor [and] I will show you an EFFECTIVE advocate.

Last [but] by no means least, MHYH is also involved in the promotion of eye, tissue, and organ donation. Organ donation saves lives [and] mine is one saved through giving amidst catastrophic loss. Donor organs are extremely scarce, yet much needed with ~74,500K individuals actively awaiting the gift of LIFE.

EDDF: What are some of the direct responsibilities you have within the organization?

SZ: Currently, I serve as the executive director of our organization. Since founding MHYH in November 2011, my direct responsibilities have included the following activities:

    • vision casting
    • facilitating the creation of an online presence for our organization and implementing an integrated social media campaign
    • networking [and] cultivating strategic partnerships with other not for profits working relentlessly on behalf of individuals and families affected by cancer to help further one another’s missions
    • actively seeking to secure the funding necessary to bring a documentary devoted exclusively to late effects to fruition
    • keeping our end in mind: the funding for late effects preventative clinical research

EDDF: How would someone donate or volunteer with myHeart, yourHands?

SZ:

  1. Click to donate at www.myheartyourhands.org
  2. Mail a check made payable to myHeart, Your Hands Inc. to 5490 Grove Point Road, Johns Creek, GA 30022
  3. Register to donate LIFE at www.donateLIFE.net
  4. To volunteer, please contact me directly by phone @ 770-313-1730 or via email sdzhappy@gmail.com.

EDDF: Tell us about your experience with sarcoma.

SchoolPictureSZ: I was diagnosed with Ewing’s sarcoma to my second left rib at 8 years of age in 1978, a time when cures were not thought to be possible. The pediatric oncology team was not optimistic [and] my parents were given little, if any, hope that I would survive; however, they were offered an invitation to enroll me in a clinical trial, the Intergroup Ewing’s Sarcoma Study. Fully aware that the intention of the trial was not curative in nature, yet believing it would extend their time with me and maybe, JUST maybe, I would be cured, they enrolled me into this randomized therapeutic trial. At the very least, they were confident that my participation would certainly benefit other children and their families who would certainly come behind me.

My treatments were brutal from radiation burns on my chest to intractable nausea and vomiting through to mucositis from stem to stearn [and] hair loss [perhaps the most difficult side effect for me to swallow as a fourth grader]. In the absence of central lines, my chemotherapy was given through a butterfly needle using every single vessel available to us including the blood vessels serving my index fingers and my feet.

Enough about that though as it’s not where I choose to dwell. I faced Ewing’s sarcoma with a great deal of resolve after all I had been sick before, taken my amoxicillin, and gotten better. Granted this medicine was something unlike any other, but seriously, why wouldn’t I get better?

Well, I did get better. In fact, I am boldly living out my cure as the sole survivor of my trial enjoying a life that is full with my loving husband, our beautiful son, a new heart gifted to me, and an incredible network of family and friends. Mine is a life characterized by HOPE [and] FUTURE. Albeit, a life that holds unique risks with regard to my health, but whose life doesn’t carry risk? The truth is that although my lived experience has not been typical, I am a lot more like you than not.

EDDF: What role did being a childood sarcoma survivor play in your decision to work in pediatric oncology?

SZ: Surviving Ewing’s Sarcoma had EVERYTHING to do with my decision to become first a pediatric oncology nurse, then a pediatric oncology nurse practitioner. I believe that there is pupose in all things [and] I had no doubt that pediatric oncology was the call on my life. It was my greatest desire to infuse hope for the future into the children, adolescents, and their families that I served. As a survivor of childhood cancer who had traveled a similar road, they were able to catch a glimpse, even to begin to believe that there was a future in store for them.

Despite my inability to return to clinical practice due to heart transplant, the call on my life is the same [and] myHeart, yourHands is the way I have chosen to continue on behalf of those affected by childhood cancer, sarcomas and otherwise.

EDDF: What is something about you that would surprise people?

SZ: I REALLY do not like being caught without a pedicure. Ironically, it has happened to me on two momentous occassions: the birth of our son [and] the day of my heart transplant.

EDDF: Is there anything you would like to add?

SZ: As cures become more and more common, we will begin to see more and more consequences in terms of late effects. Some late effects are easily managed while others can be life-threatening. myHeart’s mission is NOT to evoke fear. Quite the contrary, our mission is to ensure that survivors are well-versed in their medical history, capable of advocating on their own behalf, and well-served by the medical community so that they, too, enjoy the living out of their cures.

We invite those of you who follow alongside EDDF to come alongside myHeart. Together we will accomplish more than either of us could ever accomplish alone. You can follow us on twitter @myHEARTyrHANDS [and] like us on FaceBook at www.facebook.com/lateeffects.

Thanks to the Eric D. Davis Foundation for your commitment to providing the assist to individuals and families facing sarcomas [and] for inviting me to share myHeart with you.

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