Friday, March 20, 2009

Life after cancer...wish there was a handbook

I was thinking how 2/22/09 was my Alive Day, my 15th anniversary as a cancer survivor. Man, a ton has changed in my life since 2/22/94. After a rough 3 months of chemo, the doctors told me that as long as I was capable of giving myself shots, I was free to go home. I went home and took the next semester off. I spent the summer hanging out with friends, getting sick since my immune system was shot and trying my damndest to live a normal life and avoid cancer talk. You see, I was 18 years old and was still looking to be accepted by my peers, I still felt that I had a lot to prove. What? No clue, like I said, I was 18.

After taking the summer off and the next semester I returned to school. Now, the last thing a 19 year old wants to talk about is cancer. I resumed a "normal" college life and rarely spoke about my cancer diagnosis. I graduated in 1998, a year later than I had planned, but cancer happens. After college, I still rarely spoke about my cancer. The National Institutes of Health where I was treated asked me to talk to the children that were battling cancer. I was scared to death and only did it once. Why you may ask? I felt guilty. I know it sounds crazy, but I really felt guilty that I had beaten cancer and here these kids were battling the same thing that I went through and there were no guarantees they would survive. As odd as it sounds, I felt like I should be the one sick and they should be cancer free.

A few years after graduation, I got a double whammy. My aunt, who had already beaten throat cancer was diagnosed with Leukemia. Bad enough, I was visiting some friends in Richmond and we were heading to a bar. My buddy was having some serious issues with his eye, it was closing and he could not open it on his own. I told him that he should get it checked out, just based on what I had been through. He did...and he was diagnosed with NHL as well. The crazy thing about it is that Ryan went to High School with me. We had a graduating class of 23. What are the odds that TWO of those 23 would be diagnosed with cancer? I told myself that I would be there for Aunt Joan and Ryan during their treatments. To a certain extent I was. I visited Ryan a few times and talked to him on the phone during treatment, but it was really difficult for me. Again, that lingering feeling of guilt.

I wanted nothing more than for Ryan to be healthy and to beat this damn disease, but I really didn't know what to say sometimes. Shit, I had already beat the disease, what am I supposed to say? I felt guilty once again. Clearly, I was dealing with my own survivorship issues while Ryan was going through treatment. Sadly Ryan lost his battle with cancer. Ryan changed my life forever. His death hit me really hard, I remember the funeral like it was yesterday. He was surrounded by friends and family and still I felt like I had somehow let him down. Of course I realize now that I did everything I could to talk to him and support him but it felt so different back then. I remember at the "Irish Wake" I said something to my friends that I was going to do something in his memory. I never really knew that his passing would change my life forever.

Shortly after his passing, I did a century bike ride for the Leukemia and Lymphoma Society's Team in Training Program. I did it in memory of Ryan and in honor of Aunt Joan who was still battling cancer. I will never forget this moment...coming down the final hill and seeing the finish line, I had to pull over to the side of the road because I was overcome with tears. This was my epiphany moment. They were both tears of sadness and joy. I was sad that Ryan had lost his battle and that my Aunt was fighting hers, but happy that I realized at that point that it was OK to be a survivor and that I shouldn't feel any guilt. That was June of 2002.

Sadly, my aunt lost her battle in early 2004, but her passing just reinforced what I figured out with Ryan. Since 2002, I have done everything in my power to make up for lost time. I want to talk to everyone diagnosed with cancer and help in anyway possible. I want to raise money for cancer research so that other people don't lose loved ones like I have. I want to lobby our government so that they make cancer a national priority. I want everyone to have hope and know that cancer is no longer a death sentence, people are not only beating the disease, but thriving after cancer.

This brings me to the title of the blog. There is no handbook for life after cancer. I have learned this the hard way. I had no direction in my life after my diagnosis. There was no Lance Armstrong back then. Cancer still had that negative connotation and stigma attached. Thankfully with people like Lance and my good friend Sean Swarner, the stigmas are not as bad. Are they there? Of course they are, but sadly cancer has become so prevalent with 1 in 2 men and 1 in 3 women being diagnosed in their lifetime that we have so many more resources at hand. With that being said, I wanted to post some links below for some amazing non-profits out there. If the majority of these had been around when I was diagnosed, who knows how that would have changed my life. The good news is that they are here now, and amazing as always. Thanks for taking the time to read.

LiveSTRONG, Be Well, and Keep Climbing!

Joe Schneider

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  1. I really like reading your blogs.
    I am very very grateful that you made a change and decided to help those dealing with cancer. I know that you have helped me in my fight by being my friend, by showing me what it means to ALWAYS have HOPE and just from sharing your story and letting me see that I can and will become a Survivor just like you.

    I asked you for a LIVESTRONG quote a long time ago, not sure if you remember giving it to me but It is something I read everyday, words you shared with me that help remind me to never give up, to always livestrong and keep climbing.

    I guess in a nutshell I just want to say thank you for being involved, for showing me what it means to fight and for giving me HOPE of what I can do when I am a survivor.

  2. I read your blog today. I found you via twiter.
    This blog rang so many bells. I have eye cancer not lymphoma like you and your friend but melanoma. Its really rare 3 per million in the UK and about 4-5 per million in the US.
    So far I have been really lucky. Fell on world class leading treatment but had to fight to maintain that standard. Not a British quality but thanks to LAF I learned to ask the questions that led to me getting good treatment.
    I don't know whether I m a survivor yet - probably never will -eye cancer behaves atypically. In the UK we tend treat only those diseases that benefit the masses so 5000-6000 patients are never going to matter especially as many are over 80 - they are easy to fob off. I try and help those who ask for more I try to livestrong . Lesley - lak1