February 3, 2012

Thirty-three years ago this month

Re-reading the article published by the Clinic 5 months after my transplant gave me pause as I remembered:

Thirty-three years ago this month, I was almost finished with radiation therapy and about to begin the second cycle of chemotherapy for Ewing’s Sarcoma.
I was not expected to live.
I will turn 42 years old this month.
Twenty-one years ago this month, I was doing a word study centered on heart as I wondered if anyone would be willing to risk marriage to someone with a history of cancer and at risk for heart failure.
John and I will celebrate 18 years of marriage in August.
Nine years ago this month, I was pregnant with our first born, only born.
I was not expected to ever bear a child.
We welcomed a healthy baby boy in April 2003.
Four years ago this month, I found myself living the daily reality of a heart spiraling downward at break-necking speed.
I was not expected to live.
I received a new heart on April 21, 2008.

It is significant that I did not struggle to wake up this morning, nor drag my-short-of-breath-self to the shower only to need a 2 hour nap afterwards.  I did not step onto the scale only to realize that I had a net gain of 6 pounds in fluid overnight that would likely land me in the hospital by day’s end.

Quite the contrary, I woke up, stood for the duration of my shower, went downstairs, then immediately back up, helped our son pull his school gear together, drove him to school, and stopped by the grocery store on the way home. I did all of the things all by myself outside the supervision of another adult with no shortness of breath and no concern of being confined to the hospital.

Today, I am almost 4 years into LIFE with a heart-brand new trying to get the upper hand on a head cold fully engaged in the somewhat ordinary [and] seemingly mundane matters of a day in the life of me and my family.

And yet, I remain one who falls into all but one of the stats rotating through the hero space of our homepage countless numbers of times a day; a survivor; in fact, a celebrant of life, full of hope and future. I am one who will likely face more challenges in the future, but I stand ready and able to meet them head on as one who knows my risk and carries it well.

Co-founder, Judy Bode is one who is represented by all of the hero space statistics. Having already overcome 2 treatment-related malignancies, she currently a[wait]s heart transplantation. Judy and I would agree with Eleanor Roosevelt who once said:

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”

Furthermore, we share a belief that knowing is better than wondering, reality is far better than imagination, [and] the informed survivor is best positioned to take ownership of their personal health and wellbeing.

MHYH is committed to securing the funding required to produce a reality-based weekly television series, Second Second Chance, in order to raise awareness about the potential late effects of radiation and chemotherapy.

Our vision for Second Second Chance is twofold:
1) to inform and inspire the survivor population to lay hold of their personal health and wellbeing
2) to serve as a catalyst for curriculum changes in medical education; changes that would ensure frontline providers are well versed in the identification and management of late effects.

I invite you to share your response, your thoughts with us by leaving a comment below [and] as always to join us in our effort through your charitable giving by clicking Donate Now.


PS I would be lying to you if I  didn’t admit that I was highly motivated to get a recent picture of myself [and] our family up on the site to counter the immediate post transplant picture used in the Clinic’s article. Forgive me, please:)

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