Happy 1st Birthday to Me!
Celebrate with Eric Prostko and PPRAC.
I celebrated my first birthday on January 25, 2015!
I was honored to be invited by the members of PPRAC (Pennsylvania Perimeter Ride for Cancer) to speak at their meeting.
Words are not adequate enough to describe to you what my journey with the diseases of Cancer, Leukemia, Aplastic Anemia, PNH and MDS have taken from me, given to me and ultimately how they have blessed me.
Thank you to all the former, current and future members of PPRAC. You make a difference!
Dear Eric and PPRAC family,
I’d like to tell you a story. We all have them. Stories are
the shortest distance between two people.
We would have lunch weekly, Eric and I. We were introduced by a colleague and as she had anticipated, Eric became my friend. During these lunches, we shared stories, I learned of his family, his work and his interests. He talked passionately about biking and being part of a team of people that would ride for cancer, his preparation for the ride, the route to be taken, his reasons for being part of it. When it came time for seeking out contributors, I was happily among them.
On a Saturday evening last spring, while hosting an Archery Banquet/Picnic at our home, with 50+ people enjoying the weather and beautiful sunset in our backyard, I received a call from my doctor. ‘We have a problem’. That problem turned into the words ‘cancer’. This would be the second time in my life that I have heard that word. 30 years separated the calls. It felt different this time, maybe because I was 55 not 25, maybe because I had more to lose, maybe because this one was bad, really bad. I had a new purpose now, to find the best medical care, get a clear diagnosis, develop a plan for treatment and stay alive.
It would be 9 months before I would make the connection between my journey with cancer and each of your journey with the PPRAC family and preparing for the PPRAC Ride and all I imagine that entails - seeking donations, conditioning your body, maintenance to your equipment, creating the support team and finally putting your feet in those pedals every day for over 500 miles.
You pedaled 100 miles the first day and raised money for the American Cancer Society. I, like others on this journey, received a ‘chemo bag’, at no cost to me. Simple items, but each with its own importance in a world I was about to enter. The bag contained products and answers that would help prepare me for the treatments, manage the side effects and comfort me. I revisited the bag at each new challenge and it would hand me what I needed to manage it.
You pedaled 100 miles the second day and raised money for the American Cancer Society. I, like others on this journey, received counseling from a psychologist with the American Cancer Society at no cost to me. Transitioning from a career and working full time and enjoying an active lifestyle with my husband of 30 years to becoming sick and a cancer patient was a bigger elephant than I could handle. Through counseling, I was able to prepare myself for my new purpose, which is to get well. I eat the elephant one bite at time and my life is better having learned this.
You pedaled 100 miles the third day and raised money so that I and other women, whose entire body is changed significantly by chemotherapy and other treatments, would have a new vision of ourselves. I found myself staring at a stranger in the mirror. Unsettling and for some, tragic. At no cost to me, I was invited to a ‘Feel Good, Look Good’ class on how to take care of my skin, how to apply makeup that would highlight my best features and minimize those that made me look sick. I received a bag of cosmetics, $150 in value, which transformed my face but more importantly, I gained confidence. This event took a frightening and sometimes depressing internal process and helped me walk away smiling and feeling good about myself.
You put your - by now - tired and sore muscles on your bike and pedaled those remaining miles the third, fourth, fifth and sixth day to raise money for the American Cancer Society. I got the gift of the American Cancer Society Hope Lodge in New York City. At no cost to us. I went to Memorial Sloane Kettering Cancer Center to receive an Allogeneic Bone Marrow Transplant. I would spend 34 days in the hospital. First receiving 10 days of 5 chemotherapy drugs that would destroy my biological existence (DNA) and wreak havoc on most of my functioning organs and systems. This was followed by the gift of life in stem cells from my brother Neal, given to me on my new birthday, January 25th.
It is a requirement of the Bone Marrow Transplant Team than I live within 5 miles of the hospital for 100 days post-transplant. The risks to me without an immune system and recovering from the devastation to my body are considerable. My husband moved me to my new home for the next 3 months, the ACS Hope Lodge. The staff greeted us with open arms into an atmosphere of hope and healing and where the practical and emotional needs are met through the staff, programs, fellow patients and even the doorman. Hope Lodge is a safe, clean and controlled environment which allowed me and my caregiver to do what was most important, progress through those critical 100 days.
On a weekly basis the Hope Lodge offered to both the caregivers and guests, as the patients are called, a variety of offerings which could entertain a much weary caregiver or introduce the guest back into the real world. They offered events like cooking demonstrations, needlecraft lessons, massages, book discussions, music played by local artists and college kids providing entertainment. It was always unconditional. You came if you were feeling up to it. That is a rare gift to a cancer patient. When in our world there is so much guilt about being sick, the ACS Hope Lodge never expected, they asked ‘What do you need?’
My friendship with Eric has brought many rich moments to my life. One has been PPRAC. You have given me a gift – the understanding of the connection between what you do and how it changes lives. During a time of fear, confusion, anger and grief, I thought of all of you and what you create for us. You make a difference.
Thank you,
Ellen Kalinosky
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