So Riley turned two the other day and I’ve been doing some reflecting on how my life has changed so much since she came into it. For starters, Meg and I were never even sure if I could make a baby. The doctors at the National Institutes of Health told me that normally they would have new patients bank sperm before they start such an intensive chemo regimen. They indicated that Burkitt's was such a fast growing and rare cancer that I really didn't have time for it. I was 18 and clearly not looking to make babies, so I didn't think twice. I trusted my doctors and their decision. We just didn’t know any better at the time.
As I got older, I began to wonder though. I became more educated and more involved in the cancer community. I learned that I should have demanded to be given the opportunity. Of course when I got married it came to the forefront. We kind of agreed that if we had problems when we were trying than I would get tested. I never got tested and we honestly never actually tried. We were VERY lucky. It takes some families years to conceive and we didn’t try and were able to; truly amazing. Riley is clearly our little miracle.
I will never forget when the nurse brought Riley over to me…wrapped in the little blanket. I looked at Meg who was still on the operating table..scared, but excited…in my mind..asking her, what the hell do I do now? So, while they were working on Meg, Riley and I went with the nurse and she got her first bath. It was surreal. So many emotions…fear, happiness, apprehension, love. We were responsible for this little angel. It was amazing. Watching Riley grow the last two years has been unreal. I’ve seen her grow into a little lady. I think every parent can relate, but I cannot imagine my life with Riley. Being so involved in the cancer community, I hear about young kids being diagnosed with cancer and my heart aches for them. I cannot imagine any child having to endure what I went through. It’s not fair. I also hear stories of parents (recently a lot of Dads) that are not involved in their children’s lives…and I am perplexed. For me personally, I am drawn to everything about Riley. The touch of her hand, the way she says daddy, the smell of her hair after a bath, to our nightly rituals when I tuck her in. I melt every night when I put her to bed and she puts her head on my shoulder and I sing Amazing Grace in her ear;. I love the way she holds on and hugs me tight.
She started walking at 10 months, so we kind of knew she would be a firecracker, but I embrace that. I love how she is already fearless at the age of two. I think she has a little bit of her dad in her as she never sits still, is always talking to people, loves to be outside, and clearly has an adventurous (crazy) side.
I had the opportunity to spend two days playing Mr. Mom with Riley while Meg and our Nanny were sick. The next day I went back to work and had this feeling in the pit of my stomach. My heart actually ached. I didn’t want to leave her with the nanny. I wanted to stay at home and be with her. I would give anything to be able to stay home everyday and be with her. Now, I’m not saying she is an angel all of the time, she most certainly isn’t. She has temper tantrums and gets super cranky, but I truly cherish every minute with her. I appreciate everything that Riley represents and take nothing for granted. Sadly, I know life is short and every minute we share is special. I am amazed at how smart kids are. She clearly loves Meg and I and she knows that we would do anything for her.
Riley, when you read this in 10 years or so: I just want you to know that you are my heart and soul. You can make the worst day turn into another amazing memory with that contagious laugh and smile. I truly cherish every moment with you, good times and bad. I appreciate that life is short and I will always be there for you, no matter what life throws your way. You are my little angel.
Friday, August 6, 2010
So, lately everyone from friends and family to strangers who see me decked out in my Livestrong gear have asked me about my opinion on Lance Armstrong and the doping allegations. The honest answer is that I really don’t care. Let me explain.
Sixteen years ago I had just finished treatment and was living at home with my parents. I was bald, skinny, and had a catheter in my chest . In short, I was different. I was in a very odd place in my life. I didn’t/couldn’t fit in. On one hand, I wanted to assimilate, get back to normal and be treated like I was before cancer, but it just wasn’t a realistic expectation. I was the kid who had cancer. Cancer was such a bad word in 1994, you just didn’t talk about it. I was in a very dark place too; the National Institutes of Health asked me to talk to the kids about my experience with cancer to give them hope and inspire them. I tried, but I failed. I couldn’t do it, I felt guilty that I was alive and others were not. I could not honestly look at them and say anything to change their outlook. I didn’t really have anyone to look up to when I was going through treatment. The “support” groups at the time consisted of the pediatric patients getting together and talking about our feelings. Sounds good right? Not at all, every other week someone was missing from our group as they lost their battle. I went twice and never went back.
I watched an 18 year old boy with my same diagnosis lose his battle with cancer. Why did he die, but I did not? I don’t have an answer. Was it some higher power? Luck? I haven’t the slightest idea. I was lucky I didn’t get the infection that he did. Look, I’m not complaining, but nothing made sense to me at the time and how could it? I didn’t have anyone to talk to, there was nobody out there that truly understood what I had just gone through. The internet, well, we didn’t have the resources that we have today.
After treatment, I went home and went about my life as if cancer never existed. I never talked about it for fear of people thinking I was different. The stigma was still there. Cancer was a dirty word. They didn’t even call it by name, instead referring to it as the Big C! A couple things happened in my life to completely change my perspective. I remember hearing about this guy who beat cancer and won some bike race in France. At the time, I was an avid mountain biker, hated road bikes, etc. seemed like too much work and not enough fun for me. A couple of years later, I picked up his book. From the first page, I couldn’t put the book down. I felt like he got it. He knew everything that I went through. Did he write this book for me? Of course not…but maybe he did. He wrote it for people like me who struggle with life during and after cancer. There is no guidebook for a cancer diagnosis, you don’t know what to do, how to act, what to say. Everyone feels sorry for you and they don’t know what to say either. Do they ask if you are cured? Will it come back? How was treatment? You feel completely isolated, because again, people just don’t get it. This book was my bible. I read it 4 or 5 times.
Cancer not only physically destroys your body, but it really screws you up mentally as well. I thought some of the similarities in Lance’s book and my experience were eerie and uncanny. The tests, the MRIs, apprehension, CT scans, X-rays, right down to the nurse playing a prominent role. My primary nurse was a God-send, I confided in her, she knew everything I was feeling. To this day, our family still keeps in touch with her. We send Christmas cards and she’s seen our family grow as well as we’ve seen hers. The book showed me that it was ok to have cancer and gave me the courage to talk about my experience. It kind of said, let’s talk about it, stop avoiding it, get off your ass and make a difference. I think Lance called it the obligation of the cured.
Fast forward and my good friend Ryan Gascoyne lost his battle with cancer. I clearly remember the sermon at the funeral. The priest talked about how precious life was and how important it is to make your mark in life because life was so short. I took that to heart and told a few friends at the Irish wake (aka celebration of life involving massive amounts of alcohol) that I was going to do something to honor Ryan. I am pissed that it took his passing to get me off my butt, but it did and I will forever ride for Ryan. I got involved by fundraising for the Leukemia and Lymphoma Society by doing a century bike ride around Lake Tahoe. Got my first road bike……not so boring after all. That ride changed my life forever. I rode in honor of my aunt Joan who was fighting cancer and in memory of Ryan. It was the most amazing experience of my life. It was extremely difficult climbing the mountains of Lake Tahoe, but I was possessed. Ryan and Joan gave me the strength to finish that ride. I will never forget coming down that last hill into town. I was crying uncontrollably. They were tears of joy, but also pain and sadness. I was happy that I had finished the ride for Ryan and Joan, but I was upset that Ryan wasn’t around. That was my introduction to giving back and making a difference.
In 2004, this little yellow band popped up. I immediately got one. Livestrong. It was but one word, yet to me it was so much more than that. It became a way of life. The beauty of Livestrong is that the word is universal; it has its own meaning for each and every individual. For me, it was a constant reminder to make the most of our time on earth. Life is short and precious and we need to embrace it. The band is a constant reminder to stay on course. Times get tough, I get stressed just like everyone else, but then I glance down at the band and I remember. I remember the boy in the hospital bed next to me who lost his battle with cancer, I remember Ryan Gascoyne and Aunt Joan who both lost their lives to this horrible disease. Then…a remarkable thing happens, it’s called perspective. It brings me back to reality. I have my health, my wife, and a beautiful little girl. A bad day, didn’t get that sale I wanted, too many bills, baby crying, can’t sleep, etc. It doesn’t matter, I don’t sweat the small stuff as they say. Too many times we fail to look at the big picture, and that is what Livestrong does for me, it helps me focus on the things that are truly important to me.
The reason that I don’t care about the allegations against Lance is that at this point, Livestrong is so much bigger than him. Livestrong is a movement, not a person. We are a grassroots, unified group of people working together for a greater cause. Close to 600,000 Americans die every year from cancer and 1,500 Americans die every single day. That is a 9/11 every two days. Think about that. Globally 28 million people are living with cancer. 28 million! 22,000 people die every day from cancer, that’s more than AIDS, Tuberculosis, and Malaria combined. There is so much work to be done and the foundation is just that, a foundation, it is THE foundation of the global fight against cancer. To borrow from my friend Jamie Lindsay, "if Lance Armstrong the athlete made mistakes, so be it. The man, the cancer survivor, and the foundation however, continue to inspire and teach."
My outlook on life has completely changed and cancer is the reason I live such a rich, fulfilling life. I have so much to live for, so many things left undone, so many goals and dreams that I will fight it until there is no more fight left in my body. Plus, I love how life is full of surprises, good and bad, because that is what makes life so worth living. The unknown. I don't want to be "stuck" in life, I want surprises! Life is a precious thing.... Be well, and Livestrong!
As told to Jamie Reno in his amazing book, Hope begins in the Dark. You can find the book at www.hopebeginsinthedark.com
Wow, what can I say? A major part of my life is the fact that I am a 13 year cancer survivor. I was diagnosed when I was 18 years old and a freshman at the University of Richmond in Virginia. I had an emergency appen..omy and the doctor’s found a golf ball sized tumor attached to my appendix. After the biopsy, the doctors determined it was Burkitt’s Non-Hodgkins Lymphoma. Burkitt’s is a very rare form of lymphoma making up roughly 1-2% of all lymphomas and it also happens to be one of the fastest growing lymphomas. Had the doctors not found the tumor, they indicated I would have been dead within a week. That small golf ball sized tumor would have taken over all my vital organs in a short seven days. My world came crashing down. The doctor’s gave me a choice. Start treatment in Richmond, VA or travel north to Bethesda, MD and take part in a clinical trial at the national institutes of health. NIH is the best of the best.
The next day, we headed north to Maryland. So, for the next 2 and a half months, I lived in a hospital bed, leaving the hospital maybe 4 times. My protocol at the time was one of THE most aggressive treatments available. The doc's indicated that in a short 2 and a half months, they would give me the same amount of chemo that most patients receive over a 2 year period. I had 24 hour drips of Methotrexate, followed by Vincristine, etc. In that time frame, I had 27 X Rays, 7 Cat Scans, 6 spinal taps (one that took two hours), bone marrow taken from my backside, a Hickman catheter inserted into my chest, platelet transfusions, EKGs, lost all of my hair, and lost close to 50 lbs. .It got so bad that I had to be fed through my Hickman catheter and I had to take a wheelchair wherever I went in the hospital. I am so lucky and fortunate to have the most amazing family and friends. I sometimes think a cancer diagnosis is harder on family than the person actually going through the treatment. It has to be tough having no control and watching your son, brother, and friend battling a deadly disease like cancer. My parents, sisters, brother-in-law, and friends were absolutely amazing throughout all of my treatment. My dad would drive up from Richmond and stay with me during the week, heading home on Thursday or Friday. Mom would take his place from Friday to Monday. I could have opened a Hallmark store with all of the cards and balloons that I received. I had friends make picture collages and I even had a group of friends drive up from Richmond while making a video for me letting me know they were thinking about me all the time.
It was not all cheery all the time, reality sets in just when you think you are cruising along. My 3rd roommate actually had the same kind of cancer I had so we bonded immediately. Unfortunately, there is a time when you are fighting cancer that you become neutropenic. This means you have no white blood cells to fight off infection. He started to get an infection around the same time the doctors noticed some white spots on my chest in an X-ray. White spots on an X-ray are not good. They were unsure what it was, so they did a procedure where they stuck a camera up my nose down to my chest to see what it was. Turns out I had pneumonia. The doctors indicated they couldn’t give me antibiotics since I had a zero white blood cell count, so they would have to wait and see. While I was in the “wait and see” period, my roommate passed away from his infection, they did an emergency surgery, but weren’t able to save him. I have never been more scared in my life, but I never, ever gave up hope.
Needless to say I am very lucky to be here. I never really spoke about my cancer since it was so easy to put it on the backburner and return to normal life as a college freshman. Unfortunately, it took my aunt (Aunt Joan) being diagnosed with cancer along with a good friend from high school (Ryan Gascoyne). Sadly, Ryan passed away and it was at this time, that I woke up and decided I had a responsibility as a survivor. In June of 2002, I did a century bike ride (100 miles in one day) around Lake Tahoe for the Leukemia and Lymphoma Society's Team in Training. I did it in memory of Ryan and in honor of my Aunt. This was my first exposure to the non-profit cancer research world. When I came down that final hill in Tahoe, I had to pull over to the side of the road because I was overcome with emotion. I was crying like a little baby. They were both tears of joy and sorrow. I was happy that I had overcome so much and beat cancer, but sad that my aunt was going through treatment and that my friend lost his fight. That ride changed my life forever. It opened my eyes to so many things about survivorship and dealing with my history, an epiphany of sorts. I also met my wife on that ride, she still works for the Leukemia and Lymphoma Society. Talk about the best bike ride ever! Sadly, My aunt died months after our wedding, but it was bittersweet. We knew that our wedding would be her last hoorah, so we made the most of it. I believe in my heart that she kept fighting so she could make it to our wedding.
I have since become actively involved not only with the Leukemia and Lymphoma Society, but the Lance Armstrong Foundation. In May of 2006, I was fortunate enough to have been chosen by the Lance Armstrong Foundation to attend their LiveSTRONG day in Washington, D.C. Our goal was to ask our representatives and senators to consider an increase in cancer research funding, since the president was and did cut funding for the first time in 36 years. . I met with Sen. Barack Obama’s and Sen. Dick Durbin's Health Legislative assistants and discussed the ramifications of cutting funding. It was an amazing experience that I will never forget.
I think cancer is the best thing that has ever happened to me. I learned to take nothing for granted and as my friends, family, and wife will say, I RARELY get stressed out. I don’t really see a point in it. I guess cancer does that to you. Along the way, I have met some of the most amazing people. One of my inspirations happens to be a very close friend of mine, Sean Swarner. I have been working with his non-profit, the CancerClimber Association for the last year and a half. Our mission is for patients and survivors to inspire one another by climbing their own “Everests” by giving adventure support grants while helping them achieve things they never thought possible. I am a firm believer that everything happens for a reason. Had I not been diagnosed with cancer, I would not be the man I am today. I know it sounds trite, but for me, it’s the truth. I am so obsessed with making the most of my life that I recently compiled a list of things I want to accomplish before I die. I am up to over 100 things that I would like to accomplish before I die. My outlook on life has completely changed and cancer is the reason I live such a rich, fulfilling life. I have so much to live for, so many things left undone, so many goals and dreams that I would fight it until there was no more fight left in my body. Plus, I love how life is full of surprises, good and bad, because that is what makes life so worth living. The unknown. I don't want to be "stuck" in life, I want surprises! Life is a precious thing.... Be well, LiveSTRONG, and Keep Climbing!
Posted by Joe Schneider at 8:34 AM