Sunday, June 14, 2009

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

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Wednesday, June 10, 2009

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

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Monday, June 1, 2009

Cancer changes lives in so many ways

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 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.

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