Wednesday, August 19, 2009

The Miracle and your rights as a cancer patient

Today is such a special day for our family. When I found out I had Burkitt's Non-Hodgkin's Lymphoma at the age of 18, my world came crashing down. The doctors at the National Institutes of Health told me that normally they would have 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.

As I got older, I always wondered if that chemo had precluded me from the ability to make a baby. It was something that was always in the back of my mind. I never really dwelled on it as it was much easier to assume I was ok. 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 "truly" tried. We were very lucky. It takes some families years to conceive and we did not try and were able to; truly amazing. Looking back at my time at NIH; I should have demanded the right to bank sperm. I mean, let's be real, how long could it have really taken? (grin)

In all seriousness though, this is a very important issue that I think is somewhat glanced over when someone is diagnosed with cancer. I hope the attitude and outlook has changed since I was diagnosed. I think every male patient should have the chance to bank sperm. I certainly didn't know it when I was a dumb 18 year old college kid, but there is truly no better feeling in the world than to experience the birth of your child. So, to all the guys out there diagnosed, please, please, please, demand to bank sperm, you will not regret it.

As I reflect on Riley's first birthday, I cannot imagine a life without her. I think every parent can relate, but I also think that cancer survivors have a heightened sense of the true beauty surrounding the birth of a child. We have knocked on death's door and can appreciate the little things in life.

For me personally, I am so drawn in to everything about Riley. From the touch of her hand, the smell of her hair as I feed her and put her down for the night to the way she holds on to me when I pick her up and hold her in my arms. I appreciate everything that she represents and have never felt a love this strong. Of course I love my wife and family, but this is totally different. I know that we are responsible for bringing her into this world and I truly cherish every moment that I have with her. I leave work giddy just to rush home and see that pretty smile and hear her laugh or say hello...or her new favorite word, dog. I find it hard to truly articulate the feelings that I have in my heart when I see her. I just want to pick her up and give her a big hug.

Cancer is the worst thing that ever happened to me, but cancer is also the best thing that ever happened to me. I have been so lucky to experience so many things in life that I truly take nothing for granted. Riley can make the worst day in the world turn into the best day with her million watt smile. Meg has said that she is Daddy's little girl, maybe she is, but she is definitely her mother's daughter as well. It is so amazing the way she loves us. I have always said this and I know it sounds cliched, but I truly believe it...we have to live in the moment. Enjoy the crying baby, the rain falling outside, the neighbor's music too loud, the traffic jams, and the late bus or train. Life is really too short to not enjoy every moment, good and bad. Is it easy? Hell no, we all get caught up in every day life, but it is moments like these that I will cherish for the rest of my life. I am lucky to have amazing friends, a loving family and of course Riley, our little miracle baby. Happy Birthday Riley, I love you with all my heart and soul.

Livestrong, Be Well, and Keep Climbing!

Joe Schneider

Regardless of your taste in music, I am sure the fathers will agree this is an amazing song. I have sung this to Riley multiple times and teared up.

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Sunday, August 2, 2009

Celebration of life..and an epiphany

So, I know I haven't blogged for a while and I apologize. Lots of things going on with work, Riley, life, christenings, family, etc.. and I finally have a free second where I am not begging for sleep..not yet anyway(grin).

Eight years ago today, I lost my good friend, Ryan Gascoyne, to Non-Hodgkin's Lymphoma. Ryan was such an amazing guy. If you look "cut up" in the dictionary, you will see a picture of Ryan. I know that term is aging me, but that is the best way to describe this guy. You could be having the shittiest day in the world and Ryan would make you laugh. Ryan was our comedian, even if the jokes were not funny 100% of the time. That was the beauty of Ryan; he had endless jokes and would do whatever it took to make someone laugh. Either way, funny joke or not, you would be laughing your ass off. He just had a way of making people happy, truly a gift. He also had this amazing smile. He and I would ride the pine in High School basketball and goof off all game. I was the first joker off the bench, so he spent more time on the pine than I did, but damn if he wasn't the first one to make us laugh in the locker room or even during foul shots. We were the drama crew. The actors who were on the basketball team. It was he, Shawn Adair, and myself.

I know it sounds cliched, but I have always believed that everything happens for a reason, even if at the time it does not make sense. Lord knows, when Ryan was diagnosed with cancer, I couldn't figure it out. Our graduating class had 23 or 24 people. What are the odds that two of us would have Non-Hodgkin's Lymphoma? Knowing the facts now..I would say what are the odds that only two of us had cancer.

Ryan's passing rocked my world. I was in shock. I didn't know what to do or how to react. I felt this tremendous burden. I realize now that I had not dealt with my own survivorship issues. I was a mess. I felt guilty that I beat cancer and Ryan had not.

You see, even though I was cancer free, I had never really talked about it. I know that is hard to imagine now, but it's the truth. I was never comfortable talking about my experience. I know that sounds crazy, but before Ryan's passing, the National Institutes of Health (where I was treated) had asked me to come back and talk to some kids battling cancer. I did it once...I could not go back. It's hard to explain, but at the time I felt tremendous guilt. I felt guilty that I was healthy and they were sick; I would have given anything to trade places with them, to take away their pain, but I couldn't even talk to them about my experience. I think in some way I hadn't dealt with the mental aspect of my own fight. I was so focused on just beating the cancer, that once it was never really hit me. There is no handbook for life after cancer and everyone deals with it differently. I was 18 years old and tried to return to a normal college life. Also, there was no Lance Armstrong back then; meaning nobody really publicly spoke about cancer, it was taboo, still the big C. I now realize that all those kids needed was some hope, to see that there was life after cancer.

After the Irish wake (we all got wasted and celebrated Ryan's life, just the way he would have wanted it), I remember hanging at Shawn's house and chatting with a few friends...I made a vow right then and there that I was going to do something for Ryan. I never knew how that declaration would change my life. I decided to raise money in memory of Ryan for the Leukemia and Lymphoma Society. How was I going to do it? I chose the biggest challenge of my life, a century bike ride through the mountains around Lake Tahoe. So, in 2002, I raised over $7,000 in memory of Ryan. I remember coming down the final hill in Tahoe and pulling over to the side of the road, just crying my eyeballs out. I couldn't stop crying. They were tears of joy and tears of sadness. I was happy to be alive and to have finished, but sad that Ryan had lost his battle. I think this was my epiphany. I realized that I had the "obligation of the cured". It took me over 6 years to figure this out. I'm not really sure I would have figured it out were it not for Ryan.

Ryan and Aunt Joan have been and always will be the fuel to my fire. I will continue my crusade until no friends or families have to deal with the loss of a loved one. I lean on Ryan and Joan to this day. Even as a survivor myself, I occasionally sweat the small stuff, but it is then that I think about them. We have to live each and every day as if it were our last. I ride for Ryan and Aunt Joan.

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