Fancy Pants Thursday

Thanks to my better half, I'm sporting some cool blue pants today that were on sale from JCrew along with a hot looking belt! In the picture is my co-worker, Lisa, and I. We both work for the National Coaltion for Cancer Survivorship. http://www.canceradvocacy.org/

To mention a little bit about work, NCCS is the oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors. We believe in evidence-based advocacy for systemic changes at the federal level in how the nation researches, regulates, finances, and delivers quality cancer care. We have a legislative advocacy network that engages constituents across the country in federal cancer-related issues.

For the most part in this blog, we will attempt to leave religion and politics out of it. Cancer is a bi-partisan issue and affects everyone.

However, a fellow co-worker and long time cancer survivor said this, "This Friday, August 1 is 8/1/08. I know that doesn’t mean anything to you necessarily (given that I'm Catholic), but it does to me. In Jewish mysticism (Kabbalah), numbers have great significance. The word for "life" in Hebrew is "chai." The two Hebrew letters that make up the word "chai" are chet and yud. When looking at the numerical value of Hebrew letters, chai is equivalent to 8 and yud is equivalent to 10. So "chai", chet and yud together, equals 18."

I guess I'm telling you this b/c I do appreciate the comments and well wishes. Since I’m not symptomatic and I don’t have or feel a physical manifestation of the cancer, it is really just a mental battle right now. That to me lies the fight.

Dan on Podcast

Hi everyone-

I just wanted to post a link to a LIVESTRONG podcast Dan was a part of for the Lance Armstrong Foundation (LAF). Dan speaks at the beginning and end of the last podcast on the page under "Work".

http://www.livestrong.org/site/c.khLXK1PxHmF/b.4277405/k.6983/LIVESTRONG_Podcast_Series.htm

I am also posting a link to the LAF blog which has a lot of great reads on what is going on in the cancer community. There is a great article posted on Ted Kennedy's recent surgery and his ability to leverage so many great doctors. While we don't have the status of Senator Kennedy, his tenacity & own self-advocacy remind me of Dan. Interestingly enough, Senator Kennedy's daughter is a 5 year lung cancer survivor.

Here is the blog- second article http://livestrongblog.org/

Treatment Update

Just a quick note to let you know that Dan is scheduled to have a biopsy on Friday morning. This test will help us gather genetic information that may be helpful in determining which treatment course to take. Dan will have preliminary bloodwork before a sonogram. The sonogram is used to see whether the spot on his liver is large enough & in the right place to allow for a needle biopsy. If they can pinpoint the spot, they will numb the area and use a needle to remove a part of the tumor. From what Dan tells me, it should be pretty simple with no real downside & we can be out on the town that night. It will then take about seven days for the genetic testing.

It sounds odd, but we need your prayers & positive thoughts that the radiologists will be able to see the spot & that it is in a place where the tumor can be accessed for biopsy. In other words, just because a biopsy is in order doesn't mean that we may be able to get one.

We are very interested in having the biopsy to get more genetic information to 1) hopefully provide some greater clarity on the current treatment course & 2) to have the information in our back pocket should we need it later on down the line. As Dan wrote in his earlier post, new tests are available every day. What wasn't available 2 years ago for lung cancer patients can now help guide treatment and (hopefully) prevent survivors from having to endure multiple types of treatments before hitting on one that works. So while we have recommendations on treatment, the biopsy would just give us the extra insight.

One of our goals with the blog (in addition to letting you into our fascinating life) is to educate family, friends & others about cancer. So we welcome any questions you have, and if you post them in the comments, we'll discuss. We ourselves have a hard time understanding what is going on & what they doctors' are talking about, so we imagine others must as well.

If you'd like to come sit with us on Friday morning, we would love to see you. Email Dan or I and we can give you the information.

PS- We will continue to write about the Summit, so there should be some good posts this week!

LIVESTRONG Weekend

The Livestrong Summit is finally over and we just got back from Columbus, OH and the 6.5 hr drive! Saturday was jammed packed with emotional and inspiring keynote speakers, team building exercises and breakout sessions. On Sunday, they gave out team awards and then hosted a panel consisting of Lance Armstrong, The Ohio State University President, Dr. Sanjay Gupta (CNN), and Dr. Bernadine Healy (U.S. News and World Report). In terms of team awards, I’m proud to say that Meghan’s team dominated the fundraising tract and won both contests over the weekend. For their winning performance, each member was awarded a small video camera. It’s a small handheld device no bigger than a cell phone or a blackberry, but she got one! (So now we can post video messages with our blog once we figure it out!)

Overall, the whole weekend was really a wonderful opportunity to be part of such a special movement. In my mind, the face of cancer is changing right before our eyes. As Meghan said to me in the car ride home, “I was surprised to see how normal and healthy the people were... I couldn’t separate the cancer survivors from the family & friends.” This was surprising to me. If someone like Meghan (who lives with cancer everyday) is surprised by the face of cancer today, I wonder what people who are new to the disease think when they hear the phrase “cancer survivor?”

The fact of the matter is that people with cancer do get sick, they can lose their hair, they can have surgical scars or radiation marks…….but they can also look like the mother of two next door, the dad coaching his son’s baseball team, a co-worker in the office next to you, or a 7 time Tour de France winner. The word “Cancer” or the “Big C” has changed so much in the past 5, 10, or 20 years. New technology, new research and increased funding & awareness have changed cancer from a taboo topic and silent killer. What was once not talked about openly in my parents’ generation has become a curable or chronic disease and one whose battle which will be a national priority and a welcomed household discussion. The people, the passion, and the energy of the hundreds of attendees will, as Meghan said, “translate into a powerful grassroots effort that will move the cancer mountain.”

I just want to thank the wonderful LAF staff from Brenda flagging down a bus for us the first night to Melissa, Haley, Tina, Matt, Doug, Nikki, Sue and just everyone for reaching out to Meghan and me. You guys put on an incredibly empowering weekend and your efforts shouldn’t go unnoticed as there are still many of us still battling the disease.

We'll post some pictures and more about the Summit later this week.

LIVESTRONG.

Mind the Gap

We've just finished the first full day of the Summit here in beautiful Columbus, OH at Ohio State.



The first night was a little bumpy. The shuttle never arrived at our hotel and by the time we arrived at Presidential Townhall, we were shut out by Secret Service. All was not lost- we made our way to local bar for a few $1 drinks with some new friends from the Summit. From what we heard today, the Townhall was "electric", with both Lance Armstrong (just "Lance" to most people here) and John McCain addressing the need to strengthen the resources for all people at any stage of their cancer experience. We were also very pleased to hear that both Lance and Senator McCain directly addressed to need for more lung cancer funding and research!!!!



Today was a full day of keynote speeches and breakout sessions. Both Dan & I are in the Fundraising section, and look forward to applying some great ideas to NCCF. The highlight of the day was making 60 second commercials elevating cancer fundraising to our national agenda. I am happy to report that my team won the contest over 12 other teams and our commercial will air during Sunday's final address! Hopefully we'll get a copy that we can share with everyone.



Of course the best part of the experience is meeting other cancer warriors, both those who've overcome personal diagnosis and those who are just passionate about bringing an end to cancer. One person we were happy to speak with was Doug Ulman, president of the Lance Armstrong Foundation. Doug is also a fellow survivor. Like Dan, Doug was diagnosed as a young adult and started his own foundation, the Ulman Fund, which supports other young survivors. Check out http://www.ulmanfund.org/ for more info.



And of course, we appreciate the opportunity that the Lance Armstrong Foundation is giving us to be part of such a special movement. I have no doubt that the energy, enthusiasm & sheer willpower of the Summit delegates will translate into a powerful grassroots effort that will move the cancer mountain. You can read much more about the Summit at http://livestrongblog.org/



I will end this post with a quote that I know will stay with me. "We need to close the gap between what we know and what we do". More thoughts on that next week.



We hope you're all having a wonderful and joyous weekend.



LIVESTRONG.

LIVESTRONG Road Trip

Tomorrow morning we will be getting up bright & early to leave for Columbus, OH. We're attending the 2nd annual LIVESTRONG summit. The summit will bring together 1,000 current and potential leaders who care about cancer issues & are willing the champion the cause in their communities. Just a bunch of regular, everyday folk who want to do something about cancer.

We applied months ago (me about 3 months before Dan!), and I've been looking forward to this for awhile. Nothing like messages of empowerment & survivorship to get the energy flowing. Plus, I like road trips, and Ohio is like home for me since I spent four glorious years at Miami U in tiny Oxford, OH.

We're bringing the computer, so we'll post updates on-the-go. How hi-tech!

Great Expectations

Pete Rose, the famous baseball player, was being interviewed in spring training the year he was about to break Ty Cobb's all time hits record. One reporter blurted out, "Pete, you only need 78 hits to break the record. How many at-bats do you think you'll need to get the 78 hits?" Without hesitation, Pete just stared at the reporter and very matter-of-factly said, "78." The reporter yelled back, "Ah, come on Pete, you don't expect to get 78 hits in 78 at bats do you?" Mr. Rose calmly shared his philosophy with the throngs of reporters who were anxiously awaiting his reply to this seemingly boastful claim. "Every time I step up to the plate, I expect to get a hit! If I don't expect to get a hit, I have no right to step in the batter's box in the first place!" "If I go up hoping to get a hit," he continued, "then I probably don't have a prayer to get a hit. It is a positive expectation that has gotten me all of the hits in the first place."

Tonight is softball night. It’s the last game of the season. There is an outside chance at making it to the playoffs. My team needs a win and another team needs to lose. Given that I was a decent baseball player in high school and this is slow-pitch softball, I truly expect to get a hit every time.

But shouldn’t that be the way we approach life?

This “expectation” or philosophy can be applied to many different facets in your life. Your attitude truly makes all the difference. For me with cancer, if I don’t wake up every single day thinking that I’m going to beat this terrible disease then I don’t deserve to wake up in the first place. For the rest of you, everyday presents some type of battle. You just need to believe you are going to knock it out of the park.