Thankful Thursday

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Ahhh yes, my weekly thankful thursday blog. This idea was started by my good friend Jonathan White, an amazing 15 year old battling brain cancer. You can check him out here

This week I am thankful for having met one of my best friends, Jonny Imerman. I am guessing most of you who read my blogs have heard of this fantastic organization called Imerman Angels. I met Jonny in late 2005 or early 2006. He showed up at my sister's fundraiser for The Leukemia and Lymphoma Society. Immediately Jonny and I hit it off. At this point Imerman Angels was a very part time thing for Jonny, but he really believed in it as did I. Jonny and I bonded over many things and only realized a year later that we were both brothers in Phi Gamma Delta fraternity. He was a young adult cancer survivor. He had an amazing support system in place while he battled cancer as did I. Friends and family were abundant. The missing ingredient? The possibility of speaking to someone who had already endured what he had gone through. Nobody really understood what exactly our treatments entailed.

Personally, at the National Cancer Institute they had weekly support groups. In theory, this was a fantastic idea. We were all in clinical trials so we should have an immediate bond right? Not really as I was on the pediatric floor as an 18 year old and my meetings were with 8-18 year olds. Not a bad mix, but it seemed to me that each week, the meeting was less one person as someone lost their battle. I stopped going after 3 weeks. I needed positivity and I was not finding it here. I do not fault NCI, but I definitely needed something more. I needed hope and inspiration.

Fast forward to 2005/2006 and Jonny and I had the exact same experience. The love of family and friends was fantastic, but there was always something missing. That missing element was the ability to really bond with someone who knew about your mouth sores, your spinal taps, bed sores, nausea, inability to eat, loss of hair, having to have oatmeal baths cause of the sores on your bottom, and loss of energy. I could go on, but you get my point. A week after Jonny and I met, we had lunch at the Jefferson Tap in Chicago. This day changed my life forever. I really had the opportunity to get to know Jonny in a calm, quiet atmosphere and I realized at this moment, that I may have met the nicest, kindest, and most sincere person I had ever met. I know that when Jonny reads this he is going to laugh and probably call me a funny name, but he knows that I mean it. Jonny opened my eyes to the true meaning of altruism.

The Lance Armstrong Foundation has always said that Unity is Strength and Imerman Angels certainly embraces this concept. Where some non-profits shy away from working with other non-profits for fear of losing that fundraising dollar, Imerman Angels has not only accepted that, but embraced it. I truly believe that this is one of the reasons that we are so successful. Jonny would love for every non-profit to work in unison as would the Lance Armstrong Foundation; this is clearly not always the case in the non-profit world. In 2006, I was fortunate enough to have met Doug Ulman, then Chief Mission Officer of LAF and founder of the Ulman Cancer Fund, at a few LAF events and I immediately knew that I had to connect he and Jonny. The Lance Armstrong Foundation and Ulman Cancer Fund are amazing organizations that give back 100% to the cancer community. Doug, now CEO of LAF and Jonny immediately hit it off. Doug is a 3 time cancer survivor and he knows that Imerman Angels provides an amazing service. Our 5 year goal is for every survivor in the United States to have access to an Imerman Angel at diagnosis. Is this a lofty goal? Perhaps, but that is what goals are all about and I am confident that we will reach it. I have never been a part of an organization with more passion and fire than Imerman Angels and it all starts with the leader, Jonny Imerman.

Jonny is the type of friend who will bend over backwards for you and give up his last dollar if he can help you. He is truly a rare breed and I am more than honored to call him a friend. He is an example to us all. Everyone deals with a cancer diagnosis differently. Jonny grabbed the bull by the horns and made it his mission to make a difference in everyone's lives from day one. I can truly say that Jonny has made me a better person and made a difference in my life, I am guessing some of you can say the same. If not, pick up the phone and call him, then let me know. I guarantee you will walk away saying "wow"! Jonny just gets it, he has the compassion and smarts to realize that we all need someone to talk to. Jonny is truly one of a kind and I know this blog will make his bald head blush, but I am truly grateful to call him a friend and have him by my side. For more info, check out
www.imermanangels.org

Be Well, LiveSTRONG, and Keep Climbing!

Joe Schneider

an interesting night

Wow, so tonight was actually an amazing night. You would think that with cancer stats the way they are today, that the cancer community would be pretty broad, right? Well, let me tell you about tonight. I was invited to a networking event tonight. Most of you know, I am an allstate agent by necessity and a cancer advocate by passion. So, I met a friend of a friend at Goose Island tonight, turns out, he is the head of cancer research at Northwestern. I know, crazy...so I am talking to him (Patrick) and my other buddy and I meet an imerman angel. Wow, Chicago can't be this small, right?

Actually, tonight solidified what I already knew. Sadly, the cancer community is a small world, but we are a tight knit community. Sad, not because we have all beat or are battling cancer, but sad because we have all had to deal with this horrendous disease. The numbers are astronomical. 1 in 2 men and 1 in 3 women will be diagnosed with cancer in their lifetime. Yes, read that again, 1 in 2 men and 1 in 3 women. WOW, think about that.

This year alone 12 million people globally will hear the words, you have cancer. Yes, 12 million! 8 million people worldwide will lose their battle with cancer,8 million, that is more deaths than AIDS, Malaria, and Tuberculosis COMBINED. Can you imagine? Cancer is the number 1 killer of Americans under the age of 85. This is real my friends. We need to do everything we can to find a cure for this deadly disease.

We have lots of work to do, but I am confident that with everyone's support, we will find a cure for this horrible disease!

LiveSTRONG, Be Well, and Keep Climbing,
Joe Schneider

Thankful Thursday

By now, most of you know who my good friend Jonathan White is...he is an inspiration to us all. You can check out his blog here: Jonn does thankful thursday every week and a group of his friends have recently started the same tradition in his honor.

So, what am I thankful for this week? My wife Meg. Meg is truly one of a kind and I am a very lucky man. Meg is an amazing woman and I am thankful that she puts up with me; not in the sense you are thinking, not like I am a horrible person who is out all night, starting fights, and stealing the neighborhood kid's lunch money while neglecting my own daughter and driving recklessly with a loaded pistol. Not that at all, I am just an extremely restless person. This has been a problem since I was a kid, but certainly my cancer experience exacerbated it. I believe as a child I was called hyperactive and had it been 10 years later, no doubt I would have Hyperactivity disorder or something like that. Truth be told, I want to get the most out of each day because I feel very lucky to be alive.

Meg has worked in the cancer non-profit world for almost ten years now. Although she has not experienced cancer firsthand(thankfully), she has been around it for years. Even more so now, with her mom battling Ovarian cancer. As a result of all of this exposure, she realizes that I don't think like most people. I don't think this is something that is specific to just me, but most cancer survivors or others that have dealt with a life threatening circumstance. We realize that tomorrow may never come, so we try to really get the most out of today. It is a unique outlook on life that I wish everyone could experience without having to go through the whole cancer aspect of it. Meg gets me. She understands that I need to volunteer for Imerman Angels, Lance Armstrong Foundation, Leukemia and Lymphoma, Vital Options, CancerClimber, etc. She knows that I need to go and lobby on capitol hill each year. She knows that it helps me deal with my own survivorship issues, but she also knows that I really love giving back to the cancer community. She knows that I lost my aunt and my good buddy from high school to this damn disease and that I will do everything in my power to find a cure.

She also knows that sometimes I have to get out and ride my bike, motorcycle or go for a run or kayaking. It is really where I do my best thinking and connect with myself. I almost always have to be on the move and doing something and she understands and supports that.

Meg is not only amazing for putting up with me and my restless spirit, but she is the most amazing mother to our little girl Riley. I find such joy in watching Riley's face light up when Meg walks into the room. The connection between mother and daughter is absolutely amazing and something I will cherish forever. I am thankful and lucky to have such an amazing wife and mother to our child. She too, is dedicated to finding a cure for this horrible disease and even though she has not had cancer, she gets it. She knows that life is precious and for that I am grateful.

My cancer bubble...

So, I got an email today from an old friend in Richmond. Kristen and I were friends during and after high school, then eventually drifted apart as I moved to DC, then eventually Chicago. Thankfully, through this amazing technology called facebook (grin) we reconnected. I got an email from her today and was really inspired. Thus, the title of my blog. I am going to paste Kristen's message to me (with her permission of course). But first, I want to say a couple of things. We all have our passions. The majority of my blogs are about cancer because it is what I know and it is my passion. Sometimes I get SOOOO caught up in MY passion, that I may lose sight of the struggles others go through. Not intentionally of course, but the majority of my friends have been touched by cancer in one way or another and we tend to focus on what we are familiar with. Kristen's message really touched me.

She is an amazingly strong woman who is dealing with a horrible disease that I never even knew existed. Sad, but true. Right now, there is no known cure! I hope you find hope and inspiration in her message, I know I certainly did. Those in the cancer community can certainly relate to the loneliness, spinal taps, doctors, etc.. I hope you enjoy the change of pace and I think I will try to keep this a regular thing so I don't get lost in my cancer bubble. Kristen is truly an inspiration and I am so happy and proud to call her a friend.

Well it's that time again, the time to raise funds and to create awareness for RSD has creeped up on us. We are super excited about participating in the 2009 RSDSA Walk through Central Park on June 28th. Last year manyof us had to roll through the park for part or all of the event, but at least we were there and dedicated to the cause. I was able to walk part of it and ride for the other part. We'll see what this year brings us, I'd love to walk the entire thing!! We had the oppertunity to meet some wonderful fellow RSD'ers last year, as well as meet face to face with some friends made online. We had a wonderful weekend together and had such a rewarding experience completing the walk. We are looking forward to all of the wonderfully generous support in which we had last year, as well as educating more people and increasing our fundraising goal.

Those of you who know me well, know what kind of battle comes along with RSD, but some of you are probably not sure what exactly it is. To many of you, I look like I am healthy and am not disabled, however on the inside I'm feeling and living something completely different. RSD is a debilitating chronic pain disease which is typically brought on by some kind of trauma to the body. After the trauma heals, the body is left with extreme pain, discoloration, swelling, immobility, just to name a few of the symptoms. My ordeal started in 2000 with a work related car accident, in which I herniated a disc and required 2 major back surgeries. The 2nd surgery solved my back issues, however I developed a post operative DVT(blood clot) in my leg and had to be hospitalized for 30 days and then multiple times following, for a clot in the lung, and other complication which come with RSD. After my clot disolved I was left with excruciating pain in my leg and after numerous tests, it was determined that I indeed have RSD.

To this point there is no ultimate cure for RSD, however there are numerous treatment methods which work for everyone in a different manner. I have tried every possible medication, had over 40 epidural blocks and stellate ganglion blocks, Physical Therapy, desensitization, implanted dilaudid pump trial, spinal cord stimulator trial, ketamine infusion, numerous long and lonely hospital stays, and have yet to find the magic combination to make the pain bearable for me. I have been all over the country to different specialists and have received the same opinion and suggestions from everyone, but RSD is just such a hard disease to treat, that there are NO guarentees with anything. We thought we were on track at MCV/VCU last year when they tried dong Ketamine infusions. Ketamine is a very dangerous and toxic drug but if and when it is administered properly it can do wonderful things. It is often known as "Special K" or the "Date Rape Drug" on the streets. I came home on the infusion with around the clock nursing care and was getting excellent pain relief, as well as many of the other symptoms were gradually subsiding. The Dr's were so excited as were we, I was like the old "Kristen" who many people have forgotten about and I was back!!!! Unfortunately, I had an adverse reaction to it and went into respiratory/cardiac arrest and Chris had to do CPR until EMS came. Thank God he happened to be home, and was courageous enough to take action or I wouldn't be here to tell my story. I'm truly grateful to him. After process of elimination, it was determinned by a team of physicans that it indeed was most likely the Ketamine and therefore it is no longer an option for my treatment. It was quite disappointing since that was the only thing that gave me signifigant relief. So we are awaiting a trial machine called the Scrambler which is coming from Italy to my treating hospital, and I have been chosen as number 1 on the list to try this treatment. The Dr's seem very optimistic and we are very excited as well, it's just a matter of waiting for the thing to actually get here! Medical time is very different then the average persons time!!

In this whole process, many things have happened to me and my family as with any other serious disease, but they have all stuck by my side. I have made some of the very best friends because of them having RSD as well. I do my best to educate everyone around me, as well as all of the medical staff in all of the facilities I have been in over the years. The only way to raise awareness and ultimately find a cure is to be vocal and talk about the condition, not hide from it. I carry literature with me everywhere I go, you never know when you may run into someone who is interested or questioning what you are gong through.! I try to share my resources with newbies as well as others who maybe have hidden from the disease until it took over their lives, whatever the situation I'm willing to help anyone in any way that I can becasue I have been down almost every road possible!

I will be selling RSD t-shirts, hats, keychains, and bracelets at the walk but also online for anyone who is interested. All of the proceeds will go directly to RSDSA, it's the least I can do for an organization who is fighting for a cure. Please contact me if you are interested in any of the items, they will be coming out in May. shores324@gmail.com is the best.

We all have the organizations that are near and dear to hearts which we donate to, but I hope you will be able to share with us this year and make any donation possible. Every little bit helps and is greatly appreciated. So please take a few minutes to make a very simple donation via this site, or if you'd rather send a check to me that is wonderful as well. Just keep me posted!! I look forward to hearing from you all and meeting my fundraising goal with your help.

Thank you,

Kristen and Chris, Gab and Mike

So Kristen... thank you for sharing your story and being such a vocal advocate. You are certainly making a difference in people's lives and for that I am grateful. If anyone wants to check out her page, you can do so here www.firstgiving.com/kristenshores


Thanks for taking the time to read. LiveSTRONG, Be Well, and Keep Climbing!

Joe

BLOWN AWAY

This will be a quick blog, but I am absolutely blown away with all of the support for my dear friend Jonathan White. Not sure how, but Demi Moore read his blog and tweeted about it and now he has an enormous following. More importantly, these people are supporting him and letting him know they are praying for him.

There is nobody more deserving than this amazing 15 year cancer fighter. He is an inspiration to all of us. You are the best Jonathan!!

Thankful Thursday

Ok…my good friend Jonathan White does a Thankful Thursday blog every Thursday. You can check out this amazing 15 year old cancer fighter here : JonnandKate's Blog This is my first one and you may find it pretty odd, but I hope to have it make sense by the end.

I am thankful for having had cancer. What? Has he lost it? Yes, I am truly thankful to have had cancer. I have not lost my mind, in fact, cancer has given me a clarity that I never thought I would have. Before I was diagnosed 15 years ago, I was an 18 year old freshman in college living life without a true sense of purpose. Even after cancer, I think I was too immature to even realize what I had just gone through. Honestly, I just wanted to get back to college and forget this stupid cancer thing ever happened to me. You know what? I did just that. I went back to college, and bottled up all of my true feelings. Why? Not entirely sure, but it may have had something to do with that whole stigma attached to cancer. You see, nobody really talked about cancer back then; there was no Lance Armstrong to look up to for inspiration. The stigma was definitely MUCH greater in the early 90s then it is today. The National Cancer Institute had asked me to speak to children with cancer since I was finished with my treatment. I tried, but I failed miserably. I failed because I felt guilty. I was consumed with this enormous sense of guilt because I had completed my treatment and these kids were still fighting. I didn’t think it was fair for me to be healthy. I wanted them to be the healthy ones and I did not think they should have to endure what I just went through. What could they possibly gain from hearing me speak? I can’t really explain it, but I could not have been more uncomfortable speaking to them, so I stopped.

Fast forward 6 years after my diagnosis and I was hit with back to back bombshells. My aunt was diagnosed with Leukemia and my buddy from high school was diagnosed with Non-Hodgkins’ Lymphoma. Sadly, my friend Ryan Gascoyne lost his battle and this really opened my eyes. I think I had had an epiphany of sorts. I remember talking to some friends after his funeral and saying that I was going to do something in his memory. Well I did, I completed a century bike ride around Lake Tahoe for the Leukemia and Lymphoma Society’s Team in Training. My aunt ultimately lost her battle as well, but I learned so much from both of them. It gave me a sense of purpose and also an outlet to deal with my own survivorship issues. I have said before that the reasons that I am so involved are both selfish and altruistic. Selfish in that I think giving back is still part of my healing process even after all these years. Altruistic in the sense that if I can inspire and give hope to just one person, then I have truly made a difference.

So, that brings be back to thankful Thursday; had I not had cancer, I know I would not be the man that I am today. Cancer has given my life a much greater depth and purpose and for that I am truly thankful.

My faithful struggles

I know this seems like an odd day to write a blog about this, but it is truly in the forefront of my mind. Let me give you a little background. I am kind of putting myself out there, but you will get a glimpse and what goes on in my feeble mind:) I was born and raised in a traditional Catholic family. I was baptized, had holy communion in second grade, then confirmed in 8th grade. I did all of this as an altar boy and catholic school student. It was all I really knew. I ventured off the college and occasionally went to sunday Mass, but definitely not like I used to.

In my second semester of college, I was diagnosed with Burkitt's Non-Hodgkin's Lymphoma, one of THE most aggressive cancers out there. Had they not found my tumor, I could have been dead within a week. They found the tumor during a routine appendectomy. Fortunately, I was part of a clinical research trial at the National Cancer Institute in Bethesda, MD where I underwent intense chemotherapy for 3 months. In 3 months times, the amount of chemo I was given was the equivalent of what most patients receive in two and a half years. Clearly, I feel very lucky to be alive. Everyone deals with a cancer diagnosis differently. Some turn to God and Prayer and this gives them the hope and determination to beat the disease. Others turn to their doctors and the science that they provide. Is either side wrong? Absolutely not.

This is where my struggle enters the picture. At 18 when I was diagnosed, I certainly prayed and to this day I say THE same prayer every night before I go to bed. I have been saying the same prayer since I was 8 or 10 years old. That being said, I no longer attend church and have recently begun to really question what I have been doing all these years. I liken it to a great match of mental ping pong. The ball goes back and forth as do my opinions and feelings. I really want to believe in God, but things have happened in my life that sometimes I do question it. I have a 15 year old friend battling cancer who was diagnosed on his 14th birthday. I lost a high school friend to Non-hodgkin's Lymphoma and I lost my aunt to Leukemia. My mother in law is currently battling Stage IIIc ovarian cancer and my good friend in Cali is battling cancer for the 4th time. Would God really allow this to happen? Or does it happen to teach us a lesson in life and living? I know my aunt and friend's ultimate deaths from cancer changed my life forever. It helped shaped the man I am today. Was this the reason they were diagnosed? Did the doctors find my tumor because God had a plan for me? I don't know right now.

I look back at my cancer and did God really cure me? Or was it the amazing doctors, drugs, and sheer will of survival that got me through the ordeal?



On the other hand, how else could all the amazing beauty in the world exist? I traveled to Ireland just after college and it was one of the most beautiful places I have ever been. Paris? Same thing, blown away by its magnificent beauty. I have been fortunate enough to travel to both Alaska and Hawaii in the last year and a half as the president of the CancerClimber Association. These two places are gorgeous and full of natural beauty. Could these places exist without a God? Unfortunately, I don't have an answer quite yet, but I am confident that at some point in my life, it will all make sense.

I know that faith has a place and I consider myself a very spiritual person. Am I bad because I don't go to church every sunday? Some people would have me think that, but fortunately, I don't believe that one bit. If there is a God, I am pretty confident that as long as you live a good life and be the best person you can be you will be alright in his eyes. At this point in my life, I think church is a great place and venue for some people, but for me, I find more solace and spirituality on my bike or working out or riding my motorcycle. It gives me a place to escape. I think about my amazing family, friends and everything that I am thankful for..it is almost surreal in that I am so in touch with my senses that sometimes I get emotional. If go to church, I get so caught up in the monotony of the ritual that I lose sight of why I am there.

I hope that it all makes sense. I want to believe and will continue to do my homework and read up on everything I can get my hands on, but I do know that if we live a good life and be the best person we possibly can be, then everything will work itself out. If there is a heaven, I hope that I will be there when it is my time. I also hope that I make sense of this nature versus God struggle. I am hopeful that this is just another phase in my life and as I get older I will learn more and hopefully do the right thing. I ask that you don't judge me, but help me. I don't know it all and certainly have never professed to. I know religion, like politics, is fueled with passion and belief. I hope to learn something from all of you.

Joe Schneider

TAKE NOTHING FOR GRANTED

So, this is kind of part two of my story with bits and pieces of part one. This was recently published in the new Chicken Soup for the Soul: Cancer Book, you can buy this amazing book full of great stories here http://www.amazon.com/Chicken-Soup-Soul-Stories-Courage/dp/1935096303

My world came crashing down when I was eighteen years old and a freshman at the University of Richmond in Virginia. I had an emergency appendectomy and the doctors found a golf ball-sized tumor attached to my appendix. After the biopsy, the doctors determined it was Burkitt?s non-Hodgkins lymphoma, a very rare but fast-growing cancer. They told me that the tumor could have killed me within a week. Ever since then, cancer has been a constant in my life. I am now a fourteen-year cancer survivor.

I was fortunate enough to take part in a clinical trial at the National Cancer Institute in Bethesda, MD. They are the best of the best. For two-and-a-half months, I basically lived in a hospital bed, receiving one of the most aggressive treatments available. In less than three months, my doctors gave me the same amount of chemo that most patients receive over nearly three years. I had twenty-four hour drips of Methotrexate, followed by Vincristine, among others. I had twenty-seven X-rays, seven CAT scans, six spinal taps (one that took two hours), bone marrow taken from my backside, a Hickman catheter inserted into my chest, platelet transfusions, and EKGs. I lost all of my hair and lost close to fifty pounds.

I had to be fed through a tube and took a wheelchair wherever I went. I started treatment so quickly I was unable to bank sperm and the doctors couldn't say whether I would ever get to be a father.

Nonetheless, I was so lucky to have a great support system. My parents, sisters, brother-in-law, and friends were absolutely amazing. 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. I could have opened a Hallmark store with all of the cards and balloons that I received.

It was not all cheery all the time, though, because reality sets in just when you think you are cruising along. My third roommate had the same type of cancer as me and we bonded immediately. Unfortunately, there is a time when you are fighting cancer that you become neutropenic, i.e., 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. White spots on an X-ray are not good. 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. Meanwhile, my roommate passed away from his infection despite emergency surgery. I have never been more scared in my life, but I never, ever gave up hope.

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 Joan being diagnosed with cancer, along with a good friend from high school, Ryan, who passed away, to wake me up to my own responsibility as a survivor.

In June 2002, I did a one-hundred-mile bike ride 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 had lost his fight.

That ride changed my life forever. It opened my eyes to so many things about survivorship. I also met my future wife that day while she was working at the Leukemia and Lymphoma Society. Our wedding was bittersweet because we knew that it marked the last hurrah for my aunt, who died a few months later.

Needless to say, I am very lucky to be here. I have become actively involved, not only with the Leukemia and Lymphoma Society, but with the Lance Armstrong Foundation. In May 2006 and the summer of 2008, I was fortunate to travel to Washington, D.C., with the Lance Armstrong Foundation. Our goal was to secure an increase in cancer research funding. I met with then-Senator Barack Obama's and Senator Dick Durbin's legislative assistants and discussed the ramifications of cutting funding. I also went to the inaugural LIVESTRONG Summit, attended the Presidential Forum on Cancer and have been actively involved as the co-founder of the Chicago LIVESTRONG Army.

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, mountain climber Sean Swarner. I have been working with his non-profit, the CancerClimber Association for the last three years. Our mission is for patients and survivors to inspire one another by climbing their own “Everests” by giving adventure support grants to help 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: brother, son, friend, husband, and most recently, father. My wife and I call Riley our miracle baby because I really wasn't sure if we would be able to have a baby. Riley brings a joy to my life that I never thought possible.

Life after cancer has been amazing. It's the best thing that ever happened to me. When I say this, I receive more than my fair share of odd looks, but I truly mean it. I have 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. 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 surprises, good and bad, because that is what makes life so worth living.

Be well. LIVESTRONG. And Keep Climbing!



~Joe Schneider

Hope Begins in the Dark

So, I have been asked a few times lately as I catch up with old friends and make new ones why I am so passionate about cancer. I have been lucky enough to write my story for two fantastic books. The first was last year and is called Hope Begins in the Dark and Jamie Reno chose some lymphoma survivors to write their stories in their own words. You can actually still get the book for free at www.vitaloptions.org

The second book that I wrote my story for is the brand new Chicken Soup for the Soul: The Cancer Book. It just came out this month and you can find it here http://www.amazon.com/Chicken-Soup-Soul-Stories-Courage/dp/1935096303

Below, you will find my writings in Jamie Reno's book, then friday, after Thankful Thursday, I will post the other one. Hope you enjoy the read and thank you to everyone for your amazing support.

HOPE BEGINS IN THE DARK

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 appendectomy 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!

If you want to check out my list, this is the one from two years ago with a few new ones. My computer crashed and the 110 is now under 100. I will add them though. Thanks for reading! These are my dreams that will become reality.

Things to do before I die

1. TRAVEL TO ALL 7 CONTINENTS
2. RIDE IN A HOT AIR BALLOON
3. SKY DIVE
4. TRAVEL TO GERMANY
5. TRAVEL TO IRELAND AND THIS TIME VISIT KERRY WHERE MY FAMILY IS FROM
6. COMPLETE A TRIATHLON
7. GO ON A CRUISE
8. SPEAK IN FRONT OF OVER 100 PEOPLE COMPLETED MULTIPLE TIMES
9. SPEAK IN FRONT OF 150 PEOPLE ABOUT MY CANCER. COMPLETEDMULTIPLE TIMES
10. ACT IN A PLAY IN CHICAGO
11. BECOME MORE INVOLVED WITH CANCER RESEARCH FUNDRAISING. LAF, LLS, CCA
12. GET ON TV AGAIN
13. GO TO ALASKA. COMPLETED IN MAY FOR SEAN’S CLIMB
14. DRIVE ACROSS THE UNITED STATES
15. BIKE ACROSS THE UNITED STATES
16. VISIT THE GREAT PYRAMIDS
17. VIST THE GREAT WALL OF CHINA
18. VISIT CUBA
19. CATCH A FOUL BALL
20. EXPERIENCE WEIGHTLESSNESS
21. LEARN SPANISH FLUENTLY
22. GET A 6 PACK OF ABS OR FOUR PACK
23. RIDE ON A GONDOLA IN VENICE
24. COMPLETE A CENTURY BIKE RIDE. COMPLETED IN 2002
25. READ THE CLASSICS FROM HIGH SCHOOL (since all I read was cliff notes)
26. VEGAS BABY, VEGAS
27. SWIM WITH DOLPHINS
28. RACE ON A NASCAR TRACK A LA RICHARD PETTY RACING SCHOOL
29. THANK LANCE ARMSTRONG IN PERSON. DID LIVESTRONG DAY 06 AND RAGBRAI 07
30. RIDE A HORSE WITH MEG
31. GO ON A BASEBALL STADIUM TRIP
32. RUN THE STAIRS IN THE HANCOCK BUILDING
33. PATENT AN INVENTION
34. INSPIRE SOMEONE
35. RIDE IN A SUBMARINE
36. RAISE $10,000 FOR CANCER RELATED NON PROFITS. COMPLETED WELL OVER $20,000 COMBINED FOR LAF AND LLS
37. GO ON AN AFRICAN SAFARI
38. LEARN SOME FORM OF KARATE/BOXING
39. VISIT MACHU PICCHU
40. NAPA VALLEY. 2006 WORK TRIP
41. DRIVE A FERRARI
42. RIDE A LEG OF THE TOUR DE FRANCE
43. KENTUCKY DERBY… MINT JULEP ANYONE?
44. GO TO A DRIVE IN MOVIE
45. GET THE FULL SPA TREATMENT (MAYBE AFTER TOUR DE FRANCE)
46. VISIT ALL 50 STATES
47. LEARN TO BALL ROOM DANCE
48. SNOWBOARD OUT WEST. COMPLETED IN 2007 UTAH TRIP.
49. GET PUBLISHED IN A NEWSPAPER, BOOK, OR SOMETHING twice chicken soup and Jamie reno’s book
50. BUY A WHOLE BAR A ROUND ON ME
51. GET A TATOO
52. DO 100 PUSHUPS IN A ROW
53. GO TO A SUPER BOWL
54. SEE REDSKINS PLAY COWBOYS
55. GO A WHOLE MONTH WITH A RANDOM ACT OF KINDESS EACH DAY
56. KEEP A JOURNAL/MEMOIRS
57. GO ON A HIKE WITH KAILY (OUR DOG)
58. REVISIT THE EIFFEL TOWER WITH MEG
59. BUILD A FIXED GEAR BIKE BY MYSELF
60. TAKE A BIKE MECHANIC CLASS
61. TAKE A CAR MECHANIC CLASS
62. HAVE A BOYS GETAWAY. UTAH SKI TRIP
63. TEACH A CHILD HOW TO SWIM (HOPEFULLY MY OWN)
64. TEACH A CHILD HOW TO SHOOT FREE THROWS
65. CAMP OUT WITH MEG
66. RIDE MY BIKE TO WORK FOR 30 STRAIGHT DAYS
67. BUY A MOTORCYLE. STILL WANT ONE MORE!
68. VISIT HAWAII DONE IN MAY 2007
69. GO SNORKELING ARUBA ON MY HONEYMOOM
70. BREW MY OWN BEER
71. MENTOR SOMEONE
72. FINALLY COMPLETE A BUSINESS PLAN FOR MY COMPANY
73. GO A WEEK WITHOUT WATCHING TV
74. RUN WITH THE BULLS
75. WHITEWATER RAFTING
76. PICK ONE OF THOSE ADVENTURE TRIPS IN THE BACK OF OUTSIDE MAGAZINE AND GO ON IT!!
77. DRIVE ON THE AUTOBAHN
78. GET OUT OF DEBT
79. RIDE A CABLE CAR IN SAN FRAN. SAME TRIP AS NAPA
80. VISIT MACHU PICCHU
81. SING KARAOKE IN A BAR. ACTUALLY DID THIS WITH SEAN SWARNER
82. RIDE IN A HORSE DRAWN CARRIAGE
83. TRY OUT FOR JEOPARDY
84. MARDI GRAS
85. GO ON ONE MONTHLY CRITICAL MASS BIKE RIDE IN CHICAGO
86. TAKE PIANO LESSONS AGAIN AND ACTUALLY PRACTICE THIS TIME
87. RIDE A MECHANICAL BULL
88. DO A HOME EXCHANGE WITH SOMEONE IN ANOTHER COUNTRY
89. TAKE GOLF LESSONS
90. PLAY A ROUND OF GOLF WITH MY BROTHER IN LAW
91. SPEAK TO CANCER PATIENTS IN A HOSPITAL
92. MAKE A CONSCIOUS DECISION TO DEDICATE MY LIFE TO FIGHTING CANCER AND HELPING OTHERS FIGHTING CANCER. DONE AFTER LIVESTRONG DAY 2006. THE TRIP CHANGED MY LIFE
93. GO ON CROSS COUNTRY OR FROM ALASKA TO CHILE WITH SEAN ON MOTORCYCLES VISITING CANCER PATIENTS ALONG THE WAY
94. PICK ONE BASEBALL TEAM AND GO TO EVERY HOME GAME FOR ONE SEASON (INCREASES ODDS OF COMPLETING #19)
95. START AND MAINTAIN A BLOG
96. DO AN IRONMAN WITH JONATHAN WHITE AND GENA SOLAR