My commitment to clinical research is rooted in my parents’ decision to enroll me in a clinical trial back in 1978 when I was diagnosed with Ewing’s Sarcoma. Despite the fact that the oncologists told my parents I would almost certainly die, my parents moved forward knowing that if I didn’t benefit, then children in the future would surely benefit. Amazingly, a study, aimed towards the study of toxicity rather than cure, saved my life; thereby, giving me the opportunity to live.
This opportunity was accompanied by risk(s) for potential late effects of this life-saving treatment. Some of these late effects were minor, yet some were quite intimidating. I have never taken these risks lightly though I haven’t been consumed by fear of them either. I have learned to navigate the grey of my reality while successfully drinking in the moments of my life by arming myself with information about my treatment and the risks that I carry: THIS day, every day. Trust me, dismantling this kind of fear is no minor feat, yet why fight to save your life, if you’re not going to live your life.
I have carried risk for heart failure, premature menopause, restrictive lung disease, osteoporosis, and infertility since I was 11 years old. I shouldered these risks with my parents through my teenage years supported by their fierce love for me. Every step of the way, they taught me something new about myself, my unique set of needs, my cancer, its treatment, and my risk, including things to guard against such as participating in sports that demanded a great deal of stamina, smoking and alcohol use, unplanned pregnancy and significant delays in having children.
In my life, the treatment of my cancer eradicated my cancer, but it would also prove to eradicate my heart rendering it nothing more than a flutter and placing my life in harm’s way once again 5 and ½ years ago when I was 38 years young. With husband, son, family, and friends in tow, I underwent heart transplantation at the Cleveland Clinic. Though standing at the threshold of death, I was gifted another opportunity to live.
In response to this opportunity-gifted, I partnered with Judy Bode, another survivor, to establish myHeart, yourHands (MHYH), a 501 (c)(3) tax exempt organization, dedicated to educating and equipping survivors and healthcare providers regarding the potential late effects of cancer treatment and promoting organ donor registration. Indeed, MHYH has elected to pursue a cause-raising initiative as an outreach to survivors whom studies show are under-informed and ill-equipped with regard to the potential late effects of cancer treatment. Survivors who may, in fact, be struggling with late effects, yet not even know it. Add to that the reality that most primary care providers are ill-equipped to provide risk assessment along with appropriate screening across time. Insult to injury, there are few clinical research trials looking at effective management and/or prevention within the realm of late effects.
MHYH has chosen to use the arts, specifically film, to take late effects to the broadest audience possible so that survivors begin to appreciate that they, too, have risks for late effects. Film in a medium that most find approachable, palatable and readily available on their own terms. We believe distribution across all media channels will begin to dismantle the survivor’s fear which ultimately works against their health and wellbeing.
MHYH stands with Consano is their mission to Hope. Honor. Heal. from cure through to survivorship.