My Dancing Miracle...

My Speech at the Livestrong Global Summit in Dublin

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.

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 over...it 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.

UNITE

I have to admit that I find myself in a position that I never would have imagined. I'm a 15 year cancer survivor and have dedicated my life to giving back to the cancer community in every way possible. As most of you know, the CancerClimber Association (CCA) was contacted many months ago by a young 14 year old boy named Jonathan White. CCA was founded by Sean Swarner, a two time cancer survivor who became the first survivor to summit Mt. Everest.

Needless to say, when we heard about this 14 year old who contacted us, we immediately wanted to do everything we could to help. We are not a large organization by any means, but were truly moved by the passion and determination of this young survivor. We could relate to this story on many different levels; Sean and I were both diagnosed in our teens while Gena, a survivor herself could not imagine someone enduring such hardship at a young age. We just really wanted to give hope to a dying boy.

I am writing this because for lack of a better word we have all been duped to one degree or another. I spoke to Jonathan on the phone and offered our support. I sent him a copy of the Chicken Soup for the Soul book that both Sean and I contributed our stories to. My mother, who knew what it was like to have a son go through cancer at a young age, sent him birthday cards to tell him to be strong and that she would pray for him. I am certain many of you have stories similar to this. When I spoke to Jonathan on the phone, it truly sounded like an ill 14 year old boy who was battling brain cancer.

I really don't want to focus on the negative though. Does this person deserve to pay? Of course they do, we have all invested our hearts, tears, time, money, and passion into a person that doesn't even have cancer, but is clearly sick and needs some sort of help. It is important that we focus on the positive and not lose sight of what everyone's ultimate goal is. As most of you know, the cancer community is a tight knit group of people that will do whatever they can to help each other out. I like to think of it as a club that you never want to become a member of, but once you do, you find your best friends in the world. It is very hard to articulate, but cancer changes the way you look at everything. We stick together and have a unique outlook on life and truly want to help others going through the same thing. You can talk with someone who has been touched by cancer and there is that immediate bond; almost like family.

We need not focus on the actions of this one person, but truly embrace the good that others are doing. We certainly don't want to stop what we are doing because of one bad apple...if we did, survivors, fighters, advocates, and caregivers would fall through the cracks and that is not fair to anyone. Should we be more careful? Perhaps, but in this situation, we felt like we had the bases covered, we crossed our T's and dotted our I's as best as you can in this technological day. We confirmed with "dad" that we could speak to him.

The true purpose of this blog is that I don't want people to lose faith in the system and give up this fight. The internet is such a valuable tool in this effort to find a cure for cancer. It brings people together that otherwise would have never known each other existed. It allows us to spread messages of hope and lift spirits of people who would have thought of cancer as a death sentence. It allows vital information to pass into people's hand such as clinical trials, treatments, and insurance information. It connects survivors, fighters, advocates, and caregivers from around the world. Cancer kills 8 million people worldwide! That is more deaths than AIDS, Tuberculosis, and Malaria combined. This year alone, 12 million people will hear the words "you have cancer". 1500 Americans die each day from cancer and cancer is the #1 killer of Americans under the age of 85.

As you can see, this is bigger than a sick, fictitious person named Jonathan White. So please, I know this has been a rough couple of days for all of us, but it is important for us to stay positive and continue to do our parts. We must come together in these difficult times, stick together, and get the job done. We have a lot of work to do and we can't accomplish it without a united front. Cancer is a global epidemic and together we can end the stigma attached to this disease. As Lance Armstrong has said these past few weeks, IT'S ABOUT YOU. We will all get through this together and if we continue to do our parts, we will give hope through inspiration and help find a cure for this disease.

LiveSTRONG, Be Well, and Keep Climbing!

Joe Schneider
CancerClimber Association

My friend Brad's blog about OVAC and Mom

Do you ever meet someone and things just click? I met Brad Smith (yes, that is his real name, haha) when I was in DC for OVAC and he is just one of those people who get it. This was before he told me he was from Maine, where Meg and I were married and are vacationing in August. ( that is Brad on the far left)

He is not a cancer survivor, but brings an amazing perspective to this battle. Brad lost his mom to Pancreatic cancer. I have always said that I truly believe that a cancer diagnosis is harder on the family members then the person diagnosed. Of course, my perspective is unique, but I have heard this from a few people. As patients, we are in tune with what is going on with our body and we are the gate keepers...we choose to tell others what we want them to know. Do we put on a happy face even though we really feel like shit? Up to us. Our families know this though. They have zero control over what we are feeling and know that down deep inside we could be keeping things from them.

Anyway, Brad sent me an email tonight that was a reflection on his time in DC. I was moved to tears. It is full of passion and you can truly tell how much this cause means to him. I immediately asked if I could post on my blog. Of course. I hope you enjoy this as much as I did. This is kind of a nice recap of what we were doing in DC as well as how much work is left to be done.

Dear Friends,

It was fantastic to meet everyone down in DC and to unite and work together for a great cause. In keeping with the optimism, the energy and the excitement of the last few days, I wanted to share some thoughts and keep the momentum going.

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." ---Margaret Mead

Let those words resonate with you.

We are those people. I have no doubt in my mind. We are those people. We can change the world. Let's say that again: we can change the world.

I ask the question: why wouldn't we, why couldn't we change the world?

My mom died of pancreatic cancer three and 1/2 years ago. She presented with back pain. She looked as healthy and was just as vibrant as you and I. She was told at her first visit: You have at best 6-8 weeks to live without treatment, maybe 6-8 months with treatment. Have you ever been confronted with a no win proposition? Have you ever been asked to play a game that you did not sign up for, where the stakes are your life and you have very little control over the outcome? Have you ever tried to wrap your arms around the phrase, "I'm sorry. There is nothing we can do for you." I had never confronted these questions until my mom's diagnosis and I hope to help prevent others from ever having to face them as well.

My mom lived with grace, dignity and a passion for life that is unparalled. She fought the best she could and she lived her allotted 7 months: diagnosis June 3rd 2005, passed away Feb 5th, 2006. In some ways, while she stood a chance to be in the 1-2% of pancreatic cancer surviors who live greater than 5 years, the deck and the cards were stacked against her from the beginning. In the year 2005, as in 2009, in the United States of America, no matter what cancer you may confront---those figures are unacceptable.

I don't have time to mince words when 1500 die from cancer every other day. I don't have time to standby as people in this country, like my mom, are not being afforded an opportunity at life or the treatments to sustain it. I don't have time to wish that things would have been different when there are new research projects that need to funded, new drugs that need to brought to market and people who need our support, our love and our care as they navigate this disease.

We have been given an extraordinary opportunity to fight for cancer survivors past, present and future. We have been given an opportunity to change the world. With that opportunity comes tremendous responsibility: the responsiblity to tell our stories as often as necessary, the responsiblity to harness and nurture the momentum of OVAC, the responsibilty to be tenacious in our desire to create positive change, and most importantly the responsibilty to never stop caring, never stop loving, never stop believing in the power of the human spirit, the mind and the soul.

Let's stay united. Let's continue to work together. Let's change the world.

Livestrong and Love,
Brad Smith
Maine

One Voice Against Cancer

So, I am back from DC and so energized, it was fantastic! Our first get together was all day Monday. Monday was our briefing day and the day we were told our specific "ask". For those that don't know, when you lobby and meet with your congressman, you are typically asking for something specific.

Our "ask" basically consisted of four point:

The first was for them to follow through with the president's statement of doubling the National Institutes of Health (NIH) budget in the next 8-10 years. The first step would be a 10% increase in funding for NIH, 20% for the National Cancer Institute (NCI), and 10% for the National Center on Minority and Health Disparities (NCMHD). It basically amounts to $3 billion for NIH, which includes $1 billion for NCI and $21 million for MCMHD. In approving this for fiscal year 2010, it would be a great start towards doubling the budget AND closing the gap from the Bush years when funding was stagnant and actually declined when biomedical inflation is taken into consideration. Money to NCI and NIH would allow brilliant young researchers to not have to worry about money for funding. We lose so many researchers to private sector, other counties, etc. because they cannot get funding, it is truly sad.

I find it fascinating that in fiscal year 2007 each dollar of the NIH's nearly $23 billion investment generated more than twice as much in state business activity. It was essentially $2.21 return for every $1 spent. Think that helps our economy both local and national??

The second point was to support a $471 million increase for the Centers for Disease Control and Prevention (CDC) cancer programs. These state based programs are vital in our communities. They help with cancer screening, monitoring, surveillance and prevetions. 565,000 Americans die each year from cancer and 1/3 of these could be prevented.

The third was for support of full funding for the Patient Navigator Program. We were asking for $18.6 million which would do wonders in helping the low income communities navigate a very complicated health care system upon diagnosis. We all know a cancer diagnosis is overwhelming, combined with a crazy health care system and it can be down right frightening.

Our 4th and final ask was for an 18% increase to the Food and Drug Administration (FDA). This amounts to a increase of $374 million. The FDA has been underfunded for so long that some amazing drugs are in a log jam for approval. It can take up to 17 years for a drug to get approval!! 17 years, that is unacceptable when some of these drugs could be saving lives. An increase would provide the FDA with resources and staffing necessary to integrate the cutting edge science and streamline from discovery to application of these trials.

Tuesday was our day on the hill. Melissa Wilhelm (co-founder of Chicago Livestrong army with me) and I were paired up with a few others from Illinois. Our first two stops were Senators Burris and Durbin's offices. Sen. Durbin has always been a HUGE supporter of ours, the crapshoot was Burris. We met with a staffer there and while he could not commit to those numbers, it sounded as if they would really support us.
We then met with Representative Davis, Quigley, and Jesse Jackson Jr. All three of whom were extremely supportive.

Now, the meetings are pretty unpredictable. If they are super busy, you may have to walk around the halls with them, meet in the waiting area or in the best case scenario a conference room or large office. The way we attacked it was I would do the introductions and start off with my story, Melissa would then tell her story (stage 4 NHL survivor), then we would go with the "ask" and why this was important. One meeting, with Congressman Danny Davis' staff, I will never forget. I start off with my story and the guy doesn't really say much, you can tell he is listening, just very tough to read. Melissa goes with her story, again, silent and intent on taking it all in. Finally, he looks at Melissa and says thank you. Thank you for coming here today and telling your story. His mom is an 18 year breast cancer survivor. He had tears in his eyes and he turned to me and said that he knows our families are happy that we are here and alive. He said they may not say it all the time, but they truly are. I teared up, Melissa teared up and he said what I've always said....a cancer diagnosis is so hard on the family. Families have no control and his mom's struggles changed his life, he did not know if she would live and he was so happy he did. He said they would do whatever they could to help us and were 100% behind us. I live in a damn good district and won't be moving anytime soon:)
Melissa and I left that meeting so touched and energized.

All in all it was an amazing experience. Our Senators and Representatives are all supportive. They all feel that us being there is a breath of fresh air. It is one thing for lobbyists to come in and ask for research dollars, but when constituents who have been personally touched by cancer come in, it means so much more. They know that telling our emotional stories 5-7 times a day is not easy, but it is necessary. We have to stay on top of all our congressman to keep them honest and make sure they follow through with the support they promise. I am confident that we will make a difference and uniting with 40 different organizations is a powerful thing. We need to mobilize people are the United States to do the same thing. Write them letters, call their office, email them. Whatever you can do will make a difference. They have to listen to us, there are 12 million survivors in the United States, talk about a powerful lobbying group. If they are flooded with people asking for money and they want to get re-elected, they will have no choice but to act on this.

So let's work together on this, unite, and make a difference! Be well, Livestrong, and Keep Climbing!!

Joe Schneider

Cancer changes lives in so many ways

Hello,
I hope everyone is doing well. This is a different sort of blog. My friend Teri's mom passed away recently and I wanted to share with everyone the Eulogy Teri gave. You must be thinking this is an odd thing to blog about, but it really is not. Cancer has such a profound impact on people's lives and the way we all respond is totally different. Although I never met Teri's mom, Andrea, I can tell she was just an amazing person with a huge heart. I was really touched by Teri's words and truly felt compelled to share. The strength of Teri, Andrea, and her family is just amazing.

Mom's Eulogy.....August 10, 1930-May 24, 2009

I’m Teri Ramirez, Andrea’s daughter, on behalf of the Ramirez family, we would like to thank each and every one of you for coming tonight. Mom’s biggest hope was that she would have a lot of people join her family to celebrate her life. Mom was an incredible woman. She was married to her childhood sweetheart and in July, they would have celebrated their 60th wedding anniversary. She always put her family first and did whatever she had to do to make sure we were well taken care of. She put others needs before her own and taught all of us the true meaning of unconditional love. Mom had a zest for life and it was the little things in life that made her happy, a call or visit from one of her kids, a trip to JoAnn’s Fabrics or Wolff’s nursery, her novelas and of course, a trip to Vegas...especially if she found a hot machine! We could never understand how she could stay up all night long in Vegas, but could barely stay up past 9pm here at home. Mom also taught us many life lessons that we will treasure forever. My siblings and I consider ourselves very blessed that we were chosen to be in her life. She was very giving, instilled strength in us, a class act and a very calming force in our lives.

Mom was very outgoing and treated everyone as if they were a close friend...even complete strangers. No one was a stranger to mom, one time a couple walked into Popo’s the restaurant mom and dad owned and mom left her cooking and walked over to their table. Mom sat down and talked with them for a while. We later found out they had just moved into the neighborhood and this was the first time mom had met them. This was the way mom treated everyone...again, our mom knew no stranger.

Mom also treated everyone as if they were her own son or daughter. Mom was a huge Spurs fan and a huge fan of Tony Parker. A few years ago, during the playoffs, we saw Tony Parker while we were eating dinner at a restaurant. Mom walked over to his table and said “I watch every game on TV. Good luck in the playoffs mijo.” What she didn’t tell him is that she was deeply hurt when the Spurs were considering trading Tony Parker, as if this was happening to her own son.

My brother, Roy’s college roommate, Hector Luna, was from El Paso and the first weekend Roy came home, mom being mom asked him if he was bringing home his dirty laundry. Of course he said “yes” and she quickly added “You’re bringing Hector’s laundry too, right?” She proceeded to do his laundry for the rest of their college days. Hector went on and taught at San Antonio College. On Saturdays after class, he would make it a point to go see mom at Popo’s.

Mom didn’t worry about the little things, she didn’t sweat the small stuff. Whenever someone would be having a bad day or going through a difficult time, mom would remind them that things could be worse. She would always say “That’s a little problem.” In fact, when we were talking about chemo and losing her hair, I asked her how she felt about the hair loss. She said, “Look at Bruce Bowen he’s bald and he looks good. Losing my hair? That’s a little problem...” Mom taught us to put things into perspective, to stay positive and to always remember things aren’t as bad as they seem. There is always someone out there who has it worse than you do so you have to appreciate what you have.

Mom taught us what it was to be a friend, she taught us to always be there for others when they needed you and even more when they thought they didn’t need you. She was so caring, had so much love to give and a huge heart. After a coworker of mine, Kim Parker, was diagnosed with breast cancer a few years ago, mom became pen pals with her, even though they had never met and at this time, I had only met Kim once before. She found out about Kim and wanted to be there for her. They continued to be there for each other sending cards and thoughtful letters. She was always there for you and never wanted anyone feel as if they were alone.

Mom taught us how to live our lives with dignity, honor and respect. Last weekend, she taught us how to die with dignity, honor and respect. About 5 days before she passed away, we found out her cancer was spreading quite aggressively. A few days later, she was admitted into the hospital. With her family surrounding her, her doctor, Dr. Sharon Wilks, came into the hospital room and gave us news NO ONE was expecting, mom only had days to live. The news was devastating for us, but mom laid in bed with a face void of emotion. In typical mom fashion, she was being strong for us, not even shedding a tear. We had to leave the room because we were devastated and shocked at this news, we left Julie, her grandaughter, in the room with mom. Mom told Julie “It’s a been a good ride Julie.” When my brother, Roy, asked to see Dr. Wilks outside of mom’s room we went to the waiting room so we could ask more specific details. Dr. Wilks began to tell us what we could expect. The words were brutal and upsetting. She then proceeded to tell us that our mom was such a classy lady that always acted with dignity and grace. She told us what an amazing woman she was and that whenever she would ask her how she was feeling, knowing full well that most peoples threshold to pain would have been a 10 mom would just say “I’m fine.” Dr. Wilks then gave us all a hug and it is my belief that mom had touched this woman in such a way that she wanted to give back to us what mom had given to her...dignity, grace and class.

Please don’t feel sorry for the Ramirez family today or consider this our loss. Feel sorry for those who never had the opportunity to meet our mom. For they are truly the ones who have lost. We believe we are better people because of our mom and we will continue that legacy for many generations to come. There is no need to feel sorry for us today as we celebrate our mom’s life. Our final day with mom was incredible. She was talking to us between naps and had everyone laughing all day. Mom was able to do something not everyone has an opportunity to do. She was able to decide exactly how she wanted this day, a celebration of her life, to be. She chose what she wanted to wear, she handpicked all 9 pall bearers, she chose her favorite flowers...violet orchids and white roses, she wanted her treasured quilt that was made with love for her by her nephew, Eddie’s wife, Dora Garcia draped over her casket, she chose the songs, even insisted she wear Red Door perfume because that’s what dad always bought her, but most importantly mom insisted on having an open casket so everyone could see how beautiful she was. Mom had a way of making people laugh without even trying. Like when she told my sister, Liz, that I was always “text mexing” or when she said, “I didn’t know Tom Cruise was Mexican!” We always got a laugh when we’d ask mom what she wanted us to bring her for dinner and she’d say “John Long Silvers.” We also thought it was funny that mom would always hum the song...(hum the song)...not realizing the words to that Rod Stewart song is “if you want my body and you think I”m sexy...” or maybe she did know those were the words. Right now, I want to ask you to take a few minutes to remember a time you had with mom when you were both laughing...(pause)...remem

ber how you felt at that time...(pause)...remember how happy she was...(pause)...THAT’S the memory we want you to have of our mom.

The few hours we were in hospice, they provided a chaplin to pray with mom and our family. When asked what she wanted to pray for, mom said “health and peace.” Right away, we knew she wanted health and peace for her loved ones. Once again, putting others before herself. It was amazing that this woman only had hours left with us and she was still more concerned with others than herself. We want to focus on mom’s last wishes, especially her wish for peace. Mom taught all of us not to take anything for granted, to live everyday as if it was your last, to let those you love know how much they mean to you and to remind them daily. She also taught us how to forgive and that there is nothing stronger or more important than the love and support you receive from your family. She taught us that there is never a reason to shut out a loved one. As we celebrate mom’s life today, please take the time to appreciate the loved ones in your life and make it a point to tell them that you love them every chance you get. Mom has shown us that you really never know how much time you have together. Most of all, please honor mom’s wish for peace. When you’re at odds or estranged with a loved one, think about why you are mad at each other and remember that mom is looking down on you and reminding you “that’s a little problem.”

Whenever we left the house, our mom always had a saying for us that we still say to this day and we say to our children as well. Mom, now it’s our turn to give you the same advice...as you enter the pearly gates of Heaven and you see the good Lord, “porte de bien.”


We have one more item on the agenda, but before that I’d like to tell you a little story.....all of us kids were talking the other day and we thought this was a universal fact that when you see a red bird, you make a wish, this was what mom always told us. We have come to find out that not everybody does that, but we all do because of mom. What we’d like to ask you to do is whenever you see a red bird, make a wish and think about mom.

I’d like to acknowledge our mom’s grandchildren who have spent many hours contributing to our celebration of her life. Andy Ramirez put together all the beautiful music you are listening to today. Unfortunately, Phillip Andry is not able to be here today, but him and his sister, Analisa Andry chose the prayer and Analisa was brave enough to stand up at the podium. Julie Ramirez and Jason Medrano spent many hours making a slideshow. Jason Medrano, Matthew and Blake Hansen are handing out pink carnations to all the ladies in honor of their grandmother.

Please continue to join us in this celebration of our mom’s life by viewing the slideshow they made with our fondest memories of our mom.

Music and thankful thursday

This post is part of "Thankful Thursday" Go to JonnandKate's Blog. To get your own button and start your Thankful Thursday post today.






I am so very thankful for music. Music has always been a major part of my life. Whether it was when I was 10 years old and force fed piano lessons, 14 years old blaring Ice Cube, or when I was 18 and listening to the same song over and over during a 3 hour spinal tap. Music to me is the most powerful drug in the world.

My mom used to call it the Finnerty rhythm. You see, apparently my mom's side of the family (the 100% irish clan) was very fond of music and dancing. From a very young age, I absolutely loved to entertain and make people laugh. I did this mostly through my dancing. Sadly, I remember in 1984 that I got a great report card and my parents said I could see any movie I wanted, my choice? Footloose. Crazy and now embarassing, but so true. I have always found solace in music. It is an easy and readily available escape from reality for me.

In high school, I had a friend that took his own life. The song that really helped me reflect on his life was tears in heaven by Eric Clapton. I could really relate to everything going on in my life and found that to be SUCH a powerful song. When I was diagnosed with cancer a few years later, there were a few songs that helped me get through it, but one that sticks to my mind was Nine Inch Nails, Hurt. I now start and end every workout with Johnny Cash's version. I know this is an odd song as it's original intention was about drug use, but I could totally relate to some of the lyrics. For me, the hurt was the chemo and the cancer, the needle was the doctors and nurses drawing blood. And you know what? I felt like I had to feel that pain to be alive. In my mind, if I didn't feel the pain, then I was not alive. I know that may sound crazy, but cancer really plays with your emotions.

Fast forward to 2002 and I had just lost a good friend to cancer and my aunt was battling cancer. I lost myself in the acoustic version of Matchbox 20, 3am. Not sure why, but it really motivated me because I could relate to the lyric, "well, I can't help but be scared of it all sometimes" and "its 3am I must be lonely." Lord knows, I was scared as shit with cancer and every morning between 3 and 5, they took my blood out of my Hickman Catheter. Turns out, this was written about his mom who passed away from breast cancer.

I will wrap it up here, but I will NEVER forget seeing Wideawake live in Chicago. Scott Leger sang their amazing song, "Maybe tonight, Maybe Tomorrow", and I lost it. If you have not heard this song, I encourage you to please check it out. I am a sucker for acoustic songs and this blew me away. The whole song is about a cancer diagnosis and Scott saw me in the front wearing my "I beat cancer" t-shirt and said that this song was for me....he sang his heart out and I swear there was not a dry eye in the room. Scott and I hung out after the show, and he is just an amazing guy with a huge heart. This is another one of the songs that motivates me when I need a kick to get off my ass and work out. I also rely on a steady dose of Metallica, Godsmack, and Eminem, but you get the picture. I pretty much run the gamut when it comes to musical tastes.

My point is that I am so very thankful for music. Music is certainly a mood maker and mood changer, I can be having the shittiest day in the world and a song comes on that riley likes and we will dance. Clearly my shitty day is long gone. Music can bring people together, change attitudes and provide motivation for that workout that you are too tired to do. I listen to music every chance I get. Fortunately, Meg and I have very similar musical tastes. Looks like Riley has some of the Finnerty Rhythm. She loves to shake her booty to Justin Timberlake. I should mention some of my favorite artists:

Jason Mraz, Eminem, Scott Leger, Damien Rice, Dr. Dre, Johnny Cash, Rascall Flatts, George Strait, Carbon Leaf, Pat Mcgee, Kings of Leon, Michael Jackson, Lionel Ritchie, Gangstarr, The Game, Kenny Chesney, Mozart, Beethoven, you get the point.

Livestrong, be well, and Keep Climbing!!
Joe Schneider

Thankful Thursday

This post is part of "Thankful Thursday" Go to JonnandKate's Blog. To get your own button and start your Thankful Thursday post today.






So, this is definitely a different sort of thankful thursday blog, but relevant nonetheless. I am thankful for our 4.5 year old pitbull mix, Kaily. Meg and I knew we wanted a dog in our lives since we both were born and raised with them. Four years ago, we went to a local place that rescues dogs; We found a fantastic dog, but immediately found out it was spoken for. It was late in the day, I was hungry and just wanted to go home. Meg suggested we stop by the pound on Western avenue about 5 city miles from where we were. Reluctantly I agreed. This is the city pound folks, the care pretty nice, but they euthanize the dogs if they are not rescued. We toured the facility and saw some interesting dogs. Nothing stood out. We were about to call it a night when we both noticed a cage off to the side. We looked in and there was this pretty little puppy in there, tag wagging and just staring at us. We took her outside and the debate began.

We both fell in love with the dog named Xena immediately. We wanted to make sure we were ready....back and forth, back and forth and we decided she was the one. We actually had to undergo some stringent interviews to confirm we were not going to train her to fight. Of course we passed, despite a Chicago bear trying to get her before us. A few days later, we took her home and so our journey began.

I assume by now that a lot of you have read Marley and me. We changed Xena's name to Kaily, a good irish girl. Kaily is our Marley. She is the sweetest dog in the world, but definitely has some idiosyncrasies. She is a 55 pound dog who acts like a lap dog. She will jump up in our laps like it is nothing! She drinks water too fast and throws it up all the time. She eats Riley's toys if she can get her paws on them and gets needy if we ignore her!

She is amazing around children. Kaily loves kisses and kisses Riley and Luke all of the time. Kaily, like Riley, can make a bad day great. I know firsthand as Kaily comes to my office everyday. I am very lucky to own my business so Kaily and I really get to hang everyday. I can be having the worst day and I look over and hear Kaily snoring and I cannot help but smile. Talk about unconditional love, Kaily is the best. There is a reason that the National Cancer Institute brings in dogs to the pediatric kids fighting cancer. I remember when I was going through treatment and the dogs came in...The entire attitude of the floor changed. Dogs can make your shitty day, an amazing one; regardless of what kind of stuff you are dealing with. Morale and dogs= increased morale. I promise.

4.5 years and I cannot imagine our lives without Kaily. I am excited for Riley to grow up with Kaily around. Kaily is definitely part of our family and I would be absolutely devasted if anything ever happened to her. It is crazy, we basically spend 365 days a year together and we can tell each other moods. It is very hard to explain, but those people who have pets, know what I am talking about. Kaily is definitely a part of our family and we are lucky to have such a cute, well behaved, and loyal dog. Kaily knows what it means to LiveSTRONG!

Thankful Thursday

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Sorry I missed last thursday! Sometimes life gets hectic with an eight month old...which brings me to my thankful thursday blog. This thursday, I am so very thankful for the miracle in my life named Riley.

We call Riley our miracle baby because I was told prior to chemo that I may never be able to make babies due to all of the chemotherapy. This is common with chemo, but even more common since I was given 2.5 years of chemo in 2.5 months. When Riley was born our lives would never be the same. I know, I know, Captain Obvious, but I mean it. She brings an amazing calm to my life, she completes me.

Riley has taught me so many things about life, even at her young age of 8 months. Most people get annoyed and crazy when a baby incessantly cries, but for me, that is the sound of life, music to my ears. Cancer tends to do that to you, gives you a totally different perspective on life. Tonight, Riley was playing and laughing and smiling and I broke down and cried. Cancer definitely makes you more emotional. I cried, not because I was upset, just the opposite, I was so happy to be there, in the moment. Then as Riley saw these tears coming down my face, she flashed that million watt smile, and I cried even more. She truly is a miracle.

I truly never knew I could love someone as much as I love Riley. The saying Daddy's little girl exists for a reason. This is not to discount the bond between Meg and Riley, because it is real and amazing. Riley and I have a different sort of bond; very hard to articulate, but I would never trade it for anything in the world. Even at her age, I am amazed. I look forward to watching our bond grow as she gets older.

I was thinking about how a cancer diagnosis affects the feelings and bond between a parent and child. Cancer tends to enhance all senses. My sense of smell is more acute, the sounds of Riley and the noises she make, I embrace. I truly love the way she makes me feel and have never appreciated anything more in my life. I truly cherish every moment she and I share together. I get that life is short and I really want to make the most of our time together. I love everything about Riley...from her booty shaking dance to the alphabet song, the splashing of the water in her duck tub, to the giggles she gives me when we play the tickle game. The gift of life is an unbelievably amazing thing and I have never been more happy in my life. Thank you Riley, for being the most amazing daughter in the world, you have changed our lives in the best way possible, you complete us. I will always cherish every moment that you and I share. You are definitely the best a dad could ask for.

Be well, liveStrong, and keep climbing!

Joe Schneider

Cancer Free

Just wanted to share something I just received. I am on the board for a Leukemia and Lymphoma Society event. Hope you enjoy as much as I did.

Jamarielle was diagnosed with ALL (acute lymphocytic leukemia) in April of 2007 and in May of 2008 she relapsed and had to undergo intense chemo and radiation in order to prepare her body for a bone marrow transplant - which she had in September, 2008. She is 'technically' in remission but won't be 'officially' cured for 2 years. She is 10 years old and SERIOUSLY AMAZING. Here is her poem:

Cancer:
Cancer was the worst of all
at least for me
it was


I used to crouch down
just like this
but now
I'm standing tall


Cancer isn't all just blues
sometimes you have some hilarious
moments too


once I was in remission
and this much is very true


I bought some bacon mints
and got the nurses back
with an 'eeewwww!'


sometimes I would be super sick though
and couldn't eat or drink for a month


I would just lie there
sleeping,
listless


with a tube
gone up my nose
and not even
a little grunt


now
when I'm home
I snore my way to sweet,
sweet
dreams


I dream of my cells living
in my body
as one
home
each little cell
has one of its own thrones


No cancer to fight
No cancer to bite


I am living the life
I always wanted
playing soccer
not worrying
about being haunted
by the cancer
that came


I am living the same
as before five
years ago
I'm out of harm's way
and from this day on
MY CANCER IS GONE!

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.