Archive for May, 2014

#ideclare4lls – the squeaky voiced lobbyist from TEXAS

Posted in Uncategorized with tags , , , , , , , , , , , , , , , , , , , , , , on May 9, 2014 by runmyssierun

I spent the last few days in Washington, D.C. with some pretty phenomenal cancer fighters – we made our voices heard on the Hill.  Y’all know that when someone else says it better than I do… I just let them. This post is taken from LLS Interim CEO Dr. Lou DeGennaro’s blog.

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With almost 400 cancer fighters declaring the end of cancer… I figured I would help you find me… I’m at the VERY top of the group. You’ll see three heads (I’ll be the third head) and mine is (if you imagine a clock, I’d be right at the 12) right smack at the top center

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After a group photo on the steps of Capitol Hill, where nearly 400-strong raised our hands and declared Cancer Ends With Me, (#Ideclare4LLS) we all – patients, survivors, families, volunteers, staff – dispersed to meet with our district legislators. Our objective: to urge our legislators in both Houses of Congress to support two critical pieces of legislation that would improve access to therapies for blood cancer patients.

 

One bill, HR 460, would limit cost-sharing for patients who require specialty tier drugs. The other, S1365, would allow a patient on Medicare to appeal if a prescription drug they need is placed on a non-preferred drug tier, meaning it comes with very high out-of-pocket costs. The law would allow patients to appeal to have the drug placed on a preferred drug list with lower coinsurance, if their prescribing physician deems it the patient’s only option.

 

While delivering our message, many advocates shared their stories with the representatives.

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“What’s the point of research if patients don’t have access to the therapies,” Ethan Zohn, star of Survivor: Africa, and a two-time Hodgkin lymphoma survivor, told Morgan Brand, an aide to Sen. Charles Schumer (D-NY).

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We were treated to two more special speakers during our morning session. Sadie Floyd is a 22-yer-old competitive drag racer who was diagnosed with acute lymphocytic leukemia when she was 2. She has committed to using her racing career as an outlet to get the word out about blood cancers.

“What LLS does on a daily basis is why I am alive today,” she said.

 

Rep. Anna Eshoo (D-CA) urged us on, saying “I love to be with advocates. You have power.”

 

We concluded our three day conference with a special performance at D.C.’s Union Station by Charles “Chip” Esten, a singer and actor, known for his role in the ABC drama series “Nashville.” Esten’s daughter is a leukemia survivor.

 

After the devastation of hearing their daughter had cancer at age 2, Esten said learning that there were treatments with a good chance of success turned their fears to hope. “That hope didn’t come from nowhere; it came from research and it came from funding that pays for research.” Today his daughter is 14.

** BUT Chip did something way more personal for ME, Lynda and Dezma:

 

As we gathered at Union Station, passersby stopped by to visit our Awareness Wall, placing stickers declaring Cancer Ends With Me and signing our petition to support the legislation discussed above.

 

Over the past three days of our conference, “Leading the Way to a World Without Blood Cancers,” we heard from renowned researchers, survivors, families and volunteers and shared best practices. We celebrated a major milestone – surpassing $1 billion in research investment – and we brought our cures and access agenda to the Hill. I leave feeling energized and knowing that all of the participants feel same the same – ready to keep fighting to make blood cancers a story of the past. LLS is making cures happen today, not someday.

What’s your limit?

Posted in Uncategorized with tags , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , on May 7, 2014 by runmyssierun

For two years I’ve busted my butt pushing my body’s limit and taking it places I’ve never thought possible. I’ve caught myself saying several times that there are no more limits anymore. Nothing is impossible.

Getting healthy —- no limits! I can do this!

Losing weight — no limits! I can do this!

Curing cancer — no limits! I can do this!!

Running 7 marathons — no limits! I can do this!!

Cycling 108 miles up a 5,000 foot mountain — no limits! I can do this!

5 triathlons…wait, but I don’t know how to swim… Who cares! Learn! No limits!!! I can do this!!!!

Ride my bike a couple of miles with Eddie through the streets of my hometown…. Uh yeah… See… I can’t do that. I’m limited. I’m not limited by legal limits because I’m legally allowed to ride my bike in the street but the ignorance, lack of respect and inexperience of automobile drivers limits my ability and now my life longevity.

Seems I got a big wake up call this week.

See, for a while I lived my life without limits. And IT WAS AWESOME!!!!!

But sitting in a courtroom this week gave me all new insights on limits… Legal limits.

All this time I’ve busted through perceived limits and countless finish lines but I see now that there are lines that no human being SHOULD cross. When a child of God, a fellow human being, crosses that line with complete disregard to all moral, ethical and legal limits, it makes me wonder if there is still another path to run (or ride) in front of me.

As I enter for the first time the Capitol of our great nation attempting to convince our elected leaders of necessary change that must take place in order for cancer treatments and possible cure for cancer to be both affordable and accessible, I am reminded of legal limits once again.

I find myself racing along a path with lines that can be pushed one way and limits that restrain in another way and lives at stake all around us.

I sat with women from all over Texas today sharing our stories of cancer. How we’ve all lost children and how we’ve lost jobs and how time had been stolen from our lives because of cancer. Each story was profound and each struggle prolific and each woman still had a smile on her face after sharing it with me… Just like Momma used to do.

And then I met Ethan.. A reality TV star. You would think his celebrity status would diminish the harshness of his struggle, or his professional soccer talent would hinder the brutality of his disease or even think… Nah, he’s too handsome to go through such pain and suffering. But cancer is not prejudice. It picks whoever it wants and it usually picks the good people. It picked his dad. He lost him to cancer when he was just a boy. And cancer picked on him, too… Twice.

Ethan was well known for his long hair but insisted on being in control of his cancer and shaved himself bald. He was still very striking. And then he shared a video diary of himself while on treatment.

He cried while watching himself as if the suffering all came back to him that very instant. He never said it but insinuated that there were moments that he didn’t think he could make it… And moment that he didn’t want to. And then he looked up with years in his eyes as he admitted the reality … “And it can come back again.”

The second time cancer hit him, he said “It hit me in the gut.” He said he had to do something …. SOMETHING. It was his “do something moment”. I know that feeling all too well.

My whole family had been effected by cancer. It will never ever be the same again. I am hit in the gut in a way that you may not understand but I promised y’all is be candid. And just as Ethan was incredible candid with me tonight, I’ll share this tonight with y’all….

I feel guilty. I feel guilty for not being chosen. I feel guilty for being healthy, for taking my health for granted all these years, and for NOT going anything until it was too late to enjoy it with those who are now gone.

There will be lines that can never be crossed. There will be finish lines that I hope will never end for me. Countless I hope! There will be limits that I hope to break and limits that I hope will never ever be touched.

Do you know what your limits are?

Oh Sissy… What a journey you’ve chosen for me!

*ps — I dreamt Donny last night. He was his six year old self sitting with me in front of the tv in the living room in the house on Samano watching Saturday morning cartoons together… As we always did. Can you guess what was on the tv? Can you guess what we were singing? #schoolhouserock #imjustabill

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Together – because it’s too hard to do this by yourself

Posted in Uncategorized with tags , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , on May 3, 2014 by runmyssierun

Being sick this last week has been a blessing. Laryngitis restricted me from mouthing off with emotion when ignorance was blaring and a lesson I learned a long time ago was you can never make sense to those who are senseless. Being stuck in bed gave me the needed rest to far exceed what I thought my body was capable of doing and this will be tested late this month. And best yet… I am convinced now more than ever that not hundreds but THOUSANDS of people around me see that change needs to happen and we are now all willing and able to do this TOGETHER.

Eddie Arguelles helped me become a cancer awareness advocate. Because of that, he helped me keep my promise to my mother and my Aunt Sissy who both lost their lives to cancer. Eddie had a cause of his own. He wanted to ride his bike with his family safely through the streets of the Valley. He was one of the biggest bicycle safety advocates I knew.

It was beyond tragically ironic how his life ended.

Now, his fellow cyclist friends and communities have come together to finish what he was not allowed to.

After all that I witnessed this week, there are no words in the English language that can capture the energy, the unity and the willingness to make the changes needed to run, ride and drive together here in the Rio Grande Valley of Texas.

Many of my local cities invited me to and my fellow cyclists to unify efforts to make running, riding and driving safer together. Incredibly progressive strides are being made in record time by multiple municipalities. Never before have I witnessed such a desire for needed change!

Many of my local cities invited me to and my fellow cyclists to unify efforts to make running, riding and driving safer together. Incredibly progressive strides are being made in record time by multiple municipalities. Never before have I witnessed such a desire for needed change!

 

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I had my cardiology exam today. I have a real good close relationship with all my doctors and their staff. They keep abreast of all my shenanigans and call me in before my big events to check up on me and make sure my body is running well.

As my nurse asked me to lift my shirt and place the stickies on my chest for the EKG, she mentioned how well my blog was coming along and how proud the staff was of all that I was doing and how far I had come. I couldn’t help but think how much better this scenario was as opposed to the mammogram and colonoscopy a few months ago.

Dr. Manohoran came in shortly afterwards and had told me it was time to do another stress test because of the irregularity that was found that first time around. *I was born with a genetic heart defect that he monitors quite often. He also noted that I was completely off my cholesterol medication and doing quite well.

He asked me about my trip to Washington DC and wished me well, scheduled my stress test to happen after my trip but before my triathlon. AND he didn’t leave the room without a “selfie” and his big bright smile.

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Doc Manohoran is ECSTATIC with my cardiac results!!! Can’t you tell???? That IS his #happy face!!! Seriously!!

If any of you all have made the decision to begin your own fitness journey, I hope you do it the right way with doctors who understand and encourage you the way mine have with me.

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And I’m not posting the latest media stories about Eddie today because my fellow cyclist friend who sat by me in court today said it better than I or any other journalist could. I am reposting his words:

I had a surreal experience earlier today at the bond reduction hearing for the man who killed my cycling buddy Eddie Arguelles. The judge opened the proceedings by asking: “Why are there so many people in my courtroom?” We then got about to the business at hand, which was the defense’s contention that the bail violated the defendant’s Eighth Amendment rights. The judge said something I found curious, namely that he was sure most of the cyclists and Eddie’s family members wanted to see instant punishment in this case. The judge argued that this, very human sentiment, violates our constitutional liberties.

I agree. The defendant deserves the chance to explain his actions which, given the circumstances, may in and of themselves represent a second level of punishment for the crime he purportedly committed. The defense argued that, lacking a toxicology report, there is no way to support the idea that the defendant was impaired at the time of the incident. The judge retorted that if he was not impaired, then the defendant’s actions (in trying to dispose of the remains of my friend) are inexplicable.

I looked at the defendant for some time today. He seemed almost pitiable. The proceedings seemed to be far above his ability to understand. He had a dull-witted, almost animalistic look to him. He seemed to represent humanity at its most basic level, a product of a self-indulgent and degenerate individualism that values sensual gratification at all costs. I saw nothing evil in the defendant, but I did discern something that is foisted on us all through popular culture, a bombastic braggadocio, an amoral dislocation based upon a fin-de-siècle mindset that unfortunately has at its end no promise of the brighter and more ethical future essential to creating a happy society. He is a symptom of a fundamental disrespect for the other that is spreading like a cancer in our society today.

None of this brings my friend back to life. None of this eases the immense sorrow the defendant has unleashed on the world. I wonder what can be done to change this, to save people such as the defendant before he becomes the terrestrial equivalent of an asteroid, lacking a moral sensibility and vaulting through space and time with little recognition of his impact on others.

 

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