Saturday, May 26, 2007

Baby James Again

In an earlier post, I wrote about a sweet baby who is battling cancer. My heart has been heavy since reading the most recent post on Baby James, his prognosis isn't looking so well. But miracles can happen, I believe they can happen, I believe one happened to me. I am calling out to all who read this to pray, chant, cross your fingers, do whatever you do to get that miracle to happen. And spread the word to get even more prayers and thoughts coming his way.

What keeps running through my head is how unfair it is. James is just 1 year old and is fighting a battle that no one should ever have to face. He was home for just a couple months when the cancer was discovered; not that anyone is prepared for this disease, but I am fairly certain it was the last thing from his parents' minds when they brought him home from Korea. This wonderful couple who were building their family got the shock of their life and instead of planning for a big vacation with their children, must now analyze their finances to pay for treatments. And there is no cure in sight.

And that is what cancer does. It tears your life into little pieces and throws it on the floor. Then you are responsible for putting it back together. You have to sort through the pieces and find what is left of your dignity and body. If you are lucky, you were able to hold onto your hope through the trauma. Cancer doesn't care who you are, it doesn't care how much money you have, whether or not you have insurance, how old you are, what you look like. It just doesn't care, it doesn't discriminate. Cancer affects everyone. No one is safe.

So let's get our act together and stand up together against this disease. Do it for yourself, do it for Baby James. If we unite against this disease then a cure can be found. And hopefully it can be found sooner rather than later.

Please visit www.livestrong.org to find out more way to get involved and to write to your Senators and Congress-person.

Thursday, May 17, 2007

Rockin' the Hill!

I arrived home late last night from my DC trip...and it was AWESOME. The LIVESTRONG Army was there in full force yellow, and we were unstoppable! At our training day we were named Generals in the LIVESTRONG Army since we are the driving force of the advocacy effort. When Doug Ulman (President of LAF) was introducing Lance at our Tuesday training he said, "Since you are all the Generals, that makes Lance, well whatever is above that." Feeling that Lance needed an official military title (and thanks to Ian infusing military into my blood), I shouted "He's the Commandant!" So the LIVESTRONG Army has been commissioned with 200 Generals and our fearless Commandant.

There were 2 advocates from NC, the other is a resident physician at Wake Forest (Jason). We worked together very well and had a fantastic tag-team approach to our meetings. We also went to each other's meeting for our House Representatives, which we both felt added to the effectiveness of our asks:
1) when considering funding for the Labor/Health and Human Services Appropriations bill, we encourage you to support a 6.7% increase for important research at NIH and NCI, as well as a $136.6 million increase in funding for critical cancer programs at the CDC .
2) to co-sponsor the Cancer Screening, Treatment and Survivorship Act of 2007.

Jason and I started the day off with his representative and her legislative aide, a meeting that set the tone for the rest of the day. Congresswoman Foxx was very supportive of our asks and stated that she would try to support the increases as long as they are not in the same legislation as other issues that she cannot support. She shared that she wished they could vote on each piece separately, but that's not how it works. I shared my story with Congresswoman Foxx, who in turn shared a story of her friend who lives in Chapel Hill and is treated for thyroid cancer at UNC-Chapel Hill...personal connection!

Next we met with each of our Senator's aides...both who shared a personal connection to cancer. Not in their immediate family or friends, but aunts or uncles who had cancer years ago before they were even born. Senator Burr's aide was very receptive and said that the Senator likes to try to support increases in funding if able; and that she would investigate further of his co-sponsoring the Senate version of the above mentioned act. Senator Dole's aide shared that she was knowledgeable of the Gardasil vaccine and how fantastic it is, but there are families who cannot afford it because insurance won't cover it (it's $130 a shot, and you need 2 shots)...which worked right into our asking of co-sponsoring the above mentioned act. Both of these meetings were fantastic and we felt we likely won support for our asks.

The Lance Armstrong Foundation held a press event in the early afternoon yesterday. There were several speakers, but the one of interest to me was Congresswoman Sue Myrick from NC. She is a breast cancer survivor and one of the sponsors of the Cancer Screening, Treatment and Survivorship Act of 2007. Jason and I were doing our best with our meetings to let it known that we want North Carolina to be at the front of supporting this act: we have 3 incredible cancer treatment and research centers (UNC, Duke, and Wake Forest) and Congresswoman Myrick as a sponsor of the act. After the press event concluded, Jason and I spoke with the Congresswoman and told her about our desire for NC to be so involved in this...of course she agreed that would be great!

The North Carolina force ended our day in my Representative's office, Congressman Walter Jones. He was unavailable due to votes going on but we had his legislative aide's undivided attention for about 45 minutes. She was so fantastic and shared that the Congressman has been voting yes for much of the recent health legislation...awesome news for our side! If Cybil wasn't on our side at the beginning of the meeting, she was definitely at the end...I practically feel she signed the recruiting papers on the line to join the LIVESTRONG Army. Congressman Jones is usually very fiscally conservative and has recently been speaking out against the war, but is being cautious about what he says (very smart since he has lots of military constituents!). I am hoping that he will be shifting to health issues, and after speaking with Cybil that seems to be a possibility. Score 4 for our side!

I am hoping after following up with the offices I will have even better news to report!

Friday, May 11, 2007

Top 10 Reasons to Cure Cancer

1. Baby James
2. Children with cancer
3. Me
4. Genderist
5. Elizabeth Edwards
6. Pico's Dad and Poppa
7. Members of my Support Group
8. Lucy, Erika, Wendell, and my other Summit friends
9. Surviviors I have met online
10. The more than 565,000 Americans that are going to die of cancer this year.
11. Cancer is the #1 killer of those under 85 (and funds are still being taken away from cancer research...hmmm, government priorities?)

Wednesday, May 09, 2007

May 16th: LIVESTRONG Day in North Carolina

Just checked my mailbox to find that I received a letter from the North Carolina Governor's office. (No, I don't need a pardoning.) Inside was the LIVESTRONG Day Proclamation that I had requested he sign. And Gov. Michael F. Easley did! May 16, 2007 has officially been declared LIVESTRONG Day in the great state of North Carolina!

Way to go, Gov. Easley! I have the backing of my great state to take to Capitol Hill now. Thank you for helping me bring awareness to cancer and all that it encompasses. Hopefully this proclamation will help save lives.

Tuesday, May 08, 2007

1 in 5 = No Good

In less than a week I will be in our Nation's Capital preparing to speak with my Senators and Congressman. I am super excited about this trip, as this is my 3rd visit to DC for the purposes of Cancer Advocacy in the last year. With each visit, I feel that I am becoming more adamant about the issue. LIVESTRONG Day 2007 will hopefully bring some change to where money is spent. It's time to put an end to this disease.

Cancer has been in the news a lot recently, and even on the cover of Newsweek. Elizabeth Edwards with her recurrence (every cancer Survivor's nightmare), Juanita Millender-McDonald (a Congresswoman from Southern California) who died from cancer, and Discovery Channel aired "Living with Cancer". But it's still not enough. President Bush recently signed a bill to reauthorize the National Breast and Cervical Cancer Early Detection Program. This program provides these early cancer screenings to uninsured and low-income women. That is great, the program is great.

But only 1 in 5 women will receive care. That is how much current funding levels allow. I'm sorry, but that is not acceptable. I'm pretty sure Congress wouldn't allow 20% of their family to go through life without these life-saving screening. So why should these women suffer?