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Vermont TEAM & Friends
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Andi Ciminello's pasta dinner speech
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Lake Placid 6/11/05
Good Evening. It is an honor and a privilege to be here tonight and welcome you to this very exciting Team In Training Event. This is my third event and each one is different - but equally fun. My first TNT was Vermont City in 2003 where I was not attending as a participant, but as a friend and supporter for my best friend, Judy Creedon, who was running in honor of my son, Adam, a leukemia survivor. It was a very exciting and emotional moment when Adam joined Judy to run the last mile with her, just one year into his treatment. I officially joined the team last year and ran the Disney ½ marathon with my daughter, Lauren, and a whole crew of Ciminello family members - loads of fun indeed. At Disney, there is a sea of purple shirts - I believe that TNT had over 2,400 participants at the whole event. And, here we are today again running a ½ with our sites, perhaps, set on a full marathon this fall (Oh no, Robin, I've now said this publicly - now I need to do it, right!)
First and foremost, I want to thank you all for joining this very special team. Whether you're a participant, a family member or an honored hero - you're part of an extraordinary team on a very important mission: to cure blood cancers and improve the lives of patients and families. I understand that this Lake Placid TNT has raised over $100k. I was asked to speak with you today about my journey as a cancer mom and to let you know what the Society means to me and to my family.
Anyone who has begun the cancer journey instantly becomes a stranger in a new and scary place, and it is very disorienting. No one goes on this journey willingly. Do we learn from others or do we somehow just figure it out? As we all eventually realize, it is a combination of both.
On February 7, 2002 I became a cancer mom, when my son, Adam, was diagnosed with acute lymphocytic leukemia (ALL), and my journey to a strange place began. Like others, I certainly didn't begin this trip willingly and tried unsuccessfully to push it away and make believe that it wasn't happening. As terrifying as the phrase "your child has cancer" sounded at the time, we quickly learned that ALL was the "good" kind of leukemia and we became grateful for this diagnosis. Adam was 13 at the time, just moving into young adulthood - in fact, we had celebrated his bar mitzvah just a few months prior to the diagnosis. At the time of diagnosis, Adam was leading a very normal and active life. He is a very competitive tennis player, a musician, a writer and a very aggressive skier. Indeed, the onset of this disease gives new meaning to the word acute. In Adam's case, it moved very fast and, luckily, was so dramatic that we were able to have a diagnosis very early. To give you an idea of the timeframe, Adam & I went skiing on January 13th and in his typical manner, was bombing down the mountain with me just barely able to catch my breath behind him. His first fever was on January 21st - what we originally thought was the flu -- and he was diagnosed with ALL on February 7th. The progression was so dramatic, given Adam's normal activity level. He went from a high-paced and busy teenage life to barely able to climb stairs in the space of two short and very painful weeks.
On that February day, our family stepped into a very new place where we didn't understand the rules, the route or the outcome of any piece of the trip. We were told that Adam had to begin intensive chemotherapy immediately and that the full course of treatment would last at least three years. It felt like being thrown onto a speeding train with me just begging to get off at any stop. There were, however, no stops allowed. Throughout this journey, I have thought a lot about the meaning of being a stranger in a strange land and how to become a blessing in the face of gripping fear.
In this strange new land, everything was fuzzy. There was a new language about hematology - learning to read and understand the complete blood count (CBC) and the complex recipe of chemotherapy agents; supportive care and blood transfusions; insurance claims and school-re-entry plans. Even the hospital setting itself was disorienting as I found it nearly impossible to get from one destination to the next - I often thought about leaving breadcrumbs behind when I journeyed to the cafeteria or bathroom, because I feared I would never make it back to our room!
Another part of being a stranger in a strange land is meeting a whole new community of people. On some occasions, it is exciting and challenging to meet new people, like when you start a new job, go off to college or move to a new community. Meeting the pediatric hematology/oncology team, which consisted of doctors, nurses, and social workers was a surreal experience. I recall thinking that I hated every person that was in the room that day telling us the news. I kept wanting to tell them to leave us alone and that we really didn't want to be their friends. (At the one-year mark, I even told Adam's oncologist, Dr. Leary, that I had truly hated her when I met her - and that I suspected that I wasn't the first parent to express these sentiments!) In short order, however, I came to love this community of caregivers. They provided us with constant reassurance and support during the scariest of times. They brought us into this strange land, and became our community and also our friends.
In this strange land, I was accepted into "the club" that's the Cancer Mom club that no one ever wants to join. During those early days in the hospital, my sister was staying with us and she started talking to some of the cancer moms on the floor. Janet encouraged me to reach out to the other cancer moms, to which I responded: "are you kidding me, I'm not part of that club." And, I would retreat to our hospital room, which was at the far end of the hallway. I guess I figured if I didn't talk to them, I wouldn't have to join. Selfishly, I also didn't want to hear anyone else's story, as I feared that I might learn about worse situations, or alternately, I might learn that ours was the most grave. In either case, I figured it was safe to just try to stay away from this group.
Of course this strategy didn't work and eventually, I joined the club and came to know many of the other brave moms on this journey. At clinic, we would share notes about upcoming treatments, side effects, school plans and our families. At each visit we check blood counts to see if we can proceed to the next phase. In a strange kind of camaraderie, the moms and dads share details about white cells, red cells and platelets. Forget HIPPA (or privacy laws) we were all in this place together.
One mom, in particular, taught me what it meant to "be a blessing." And, as fate would have it, we quickly realized that we really weren't strangers, as our parents knew each other. Nadia Maroun Hendry brought me into the club with love and reassurance, even as she faced profound pain and terror as her son, Matthew, also an ALL patient had relapsed. They were just beginning the process of bone-marrow transplantation, which involved leaving the comfort of Albany Medical Center where she had already navigated the waters and journeying to Memorial Sloan Kettering, an even scarier place. During the months leading up to and following Matthew's transplant, Nadia checked in with me, reassuring me that Adam was going to be just fine and that his case was so different from Matthew's. This time period coincided with Adam's most intensive treatments. And, as fearful as I was to get deeper into this friendship, I was drawn to her because of her unwavering courage. I visited her at Sloan several times on my own, and also together with Adam and my husband, Paul when Matthew was post-transplant and staying at the Ronald McDonald House in NYC. On one occasion, Adam and Paul, stayed at the House with Matthew and played games, while Nadia and I walked the neighborhood. Here she was in NYC, a woman from Tupper Lake, New York with people stopping her on the street asking for Matthew, offering love, care and support. Talk about being a stranger in a strange land. I watched her in the hospital, at the Ronald McDonald House and on the street. She was a magnet. People were drawn to her love and light, in the face of tremendous pain - what a blessing indeed. Matthew fought hard, but eventually lost the battle just before his 7th birthday. As a family, we will always remember him for the blessings that he gave to us with his sassy sense of humor, beautiful smile and unwavering determination.
I also learned from friends in my community who were on the cancer journey at the same time. One friend, a breast cancer survivor, taught me about the blessing of friendship and the need to persevere in the face of exhaustion and fear. Doi knew that when she, herself felt vulnerable, it was better to stay away from me. She called and checked in with us when she knew she was able. I always knew she wasn't far away, and that was a blessing.
Another friend, who lost her battle with advanced melanoma, reminded me to remain positive and surround myself with friendship and love. Helen encouraged us to get the new puppy before our old dog passed, so we wouldn't have to be sad. Just before Helen left this world, I recall lying on her bed and talking with her about the new pup who was due to arrive shortly. She advised me about exactly how to introduce the pup to our older, grumpy dog and she reminded me that no matter how much work a new puppy was, it would be well worth the effort as we would only think about laughing and forget about being sad. Helen reminded me that sadness wasn't good for Adam or anyone in our family.
Close to home, we learned again about the blessing of family. Our parents, siblings, aunts, uncles and cousins rallied around us, offering love and support and often comic relief. As terrified as my mother was to see her grandson so ill, she came to the hospital with us every Friday-always with snacks, and treats for the doctors, nurses & children at the clinic. She never acted scared, and always made Adam laugh. Our daughter, Lauren, somehow also knew how important her role would be. Her love and comfort got Adam through some of the worst of times. She learned how to be a blessing in this strange new cancer world, by just loving her younger brother. I recall looking into his room one night when he was feeling pretty rotten and seeing them curled up in bed together laughing - somehow she could make him laugh when no one else could. And, my best friend, Judy Creedon, was my voice in the community - she was the one who called friends, teachers and colleagues to tell them our news, and Judy also got me hooked on running, as it made everything hurt a bit less.
As I think back on learning how to "be a blessing." I probably learned the most from Adam, who never complained, just pushed forward with steadfast courage and determination. At the time of diagnosis, it was Adam who told the doctors and the nurses that he was a varsity tennis player (in 8th grade) and that he planned on being at practice in March - one month after his diagnosis. (He even asked the surgeon to place his port-o-catheter on the left side so it wouldn't interfere with his game!) Of course I never believed that playing tennis while in intensive treatment was possible - but sure enough he played that whole season and even beat a few kids too! (Dr. Leary used to say that she felt very sorry for the egos of the kids he beat!) He was often playing after receiving 3-4 weekly chemotherapy infusions, a seemingly incomprehensible thing to do, given that he had fewer red blood cells than his opponents. However, for Adam, tennis was his lifeline and his way to direct his energy away from cancer and totally on the process of living. He once told me that when you're playing tennis you're not thinking about cancer, he was only thinking about the ball, his opponent, his serve and the return.
Even when he looked different with his face all puffed up from steroids and bald from chemotherapy, Adam just plugged onward. On one occasion, we were skiing and when he took off his helmet in the lodge, he looked around, remembered he was bald and then asked me if I thought anyone noticed. I told him that the answer was yes. He then asked me what I thought they were thinking when they saw this bald kid. My response was that people are probably saying - "hey that's a cool kid who is just trying to get on with stuff and not letting the cancer stop him from having a great day - and that is what I truly believed.
In the days and hours immediately following the diagnosis, I recall begging and pleading for it to be me. I guess I was asking God to change things a bit, eventually realizing that we just don't get the opportunity to choose these things. One night as I lay beside Adam on that hard little hospital cot in the dark with the machines buzzing and neither of us sleeping and me hurting in every part of my body, I whispered to him that I really wanted it to be me. He told me it couldn't be me because "Mom, you have to take care of me." He gave me the courage to know we would get through this. He taught me how to be a blessing.
For us, there will always be a before and after, a line of demarcation when we stepped into (or were thrown) into this strange land. As I became a fully inducted member of the cancer mom club, the strange land no longer felt so strange and scary - it just became our world. I learned quickly how to recognize the unmistakable presence of a new family, a family who has just entered this world and I want to tell them that the journey is hard and painful, but filled with tremendous blessings along the way. When I see a family whom I know has just entered this world, I often get a sick feeling in my stomach as I can jump back into that place in time so easily and remember the feelings of those early days. I know that no one wants to be welcomed and that each family enters at a different pace. I've learned to acknowledge the glances in the waiting room and identify if someone is looking for an opening to learn more about "the club" and how to navigate the rough waters ahead, or if they just want to be left alone.
I have also learned about the importance of the Society's mission, which has become our mission. If anyone ever asked about whether pumping money into research makes a difference, they just need to look at Adam, who might not have survived this disease as recently as 20 years ago. But to say that we have an 85% cure rate for ALL doesn't mean so much if your child, like our dear, sweet Matthew Hendry, is in the 15% category. For me, there are real faces for both the 85% and the 15% -- they aren't statistics, but lives that can be saved by advancing blood cancer research and by educating patients and families about the best treatments available to them. These faces remind us daily of all of the work that is ahead of us.
And so we come to this evening and the critical role that TNT plays in the Society's mission. The funds raised through TNT (over $85 million last year alone) goes towards medical research and patient education. Yes, we have made great strides with ALL, but survival rates for other blood cancers are significantly lower. In fact, this year, over 106,000 Americans will be diagnosed with these diseases and a projected 58,000 will die because of them. This just isn't acceptable and The Leukemia & Lymphoma Society is making a difference. Along with support for research, TNT money helps fund family support programs, a call center, financial assistance for medical costs and national education programs for patients and caregivers. And, finally, TNT money helps to fund programs designed for that most wonderful and growing group of patients: survivors.
Thank you all for your dedication to this mission. Your participation at this event will bring us closer to cures for all blood cancers and continue to provide support for patient education and outreach programs. TNT is a fun way to get in shape, meet great people and travel to world-class venues like Lake Placid. Have a great time tomorrow and know that families like mine and Nadia's remain deeply grateful for your commitment to the Society's mission.
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