110 is the Loneliest Number

Wow. My fundraising this year is getting off to a slow start. Especially so since all of the money raised thus far I've put in myself. I have to remind myself that 2005 has not even started yet. But patience has never been my strong suit. :)

Also, I'm so excited, I found that my Lucky Lounge bike friends from Austin have a website! You can see it here. These are the guys who helped me on my ride last week.

And more biking news: my bike made it out of the box, and ended up once again really trashed. It is now at the bike store being reassembled for the fourth time in as many months. *sigh*.

Happy Halloween!

2005 Fundraising goal: $30,000
Raised to date: $110

PLEASE CLICK HERE TO DONATE TO THE LANCE ARMSTRONG FOUNDATION

The Bike in the Box

So, my lovely blue bike arrived in Austin looking like this:

Once out of the box, it didn't fair much better, as the gears got all mucked up, preventing me from chatting it up on the bike with Lance, though enabling me to be rescued by the Lucky Lounge bikers (who says things don't happen for a reason?) The bike is now sitting in my living room, in a box, looking much the same as it does in the photo. I just can't bring myself to open that box.

Next year it's bike rental for sure. My poor blue bike will miss out, but will get to sit safely at home.

I'm In

Well, I've done it. I've gone ahead and taken the plunge and signed up for the 2005 Peloton Project. If you read this blog you know that I raised $26,610 for 2004. I've challeneged myself and upped the ante a little bit (and so as not to be outdone once again by that crafty Ilene Winters :) and set my fundraising goal at $30,000 for 2005. I know this is going to be difficult, but I'm up to the task.

On a heartbreaking note, Stephanie Williams, my 2004 honoree at the Ride for the Roses this year, passed away last week after a courageous battle with a brain tumor. She was only 24 years old and an amazing woman. Her parents have requested donations in her memory be made to the LAF. Please give if you can. You can email me [mail @ jodisax.com] and I will give you appropriate information so that her parents can be notified of your gift.

Thank you all for supporting people whose lives have been touched by cancer. I look forward to blogging you through the year to the 2005 Ride for the Roses.

2005 Fundraising goal: $30,000
Raised to date: $110

PLEASE CLICK HERE TO DONATE TO THE LANCE ARMSTRONG FOUNDATION

More Links and More Bob

I have received more photos from the Ride for the Roses weekend to share. Ilene, my compatriot (and the all-around champ) from Region 7B has posted her photos here. Another Peloton Project member, Scott, has posted both photos and a weekend report. A big thanks to Ilene Winters and Scott Joy.

And I would be completely remiss if I posted another RftF-related entry without another Bob Roll pic. Bob is the greatest. We love Bob. Bob, call me!

Thank you, Ricky

A friend sent me this photo today:



Doesn't Lance look happy?

Stephanie Noble Williams

I will never forget you, my beautiful, courageous friend.

More Ride for the Roses Photos

I have issued a request to everyone participating in the Ride for the Roses to please send me links to their photos so that we can share here. Today's link is from Lisa Spangler. Click here and enjoy!

Thank you, Lisa! Everyone, keep sending your links....

Photoblog!

I have posted my Ride for the Roses Pictures. Included here is just a very small sample.

Anybody who would like to share their photos, please email me: mail [at] jodisax [dot] com and I will post a link here. After a few weeks, I will be creating a links page for the event. A big thanks go out to Allison, Tiffani, and all of the great people at LAF who put on such a wonderful weekend for us all. You can see from the photos just how much care went into the event.

And yes, I do have a thing about manhole covers. And yes, I realize (yet again) that I really must stop wearing those stupid Biche de Bere glasses.

Ride for the Roses Day 4

Today was the big ride day and for me, it didn't exactly start off with a bang. We were to be on the bus to depart for the ride at 6:30 a.m. At 6:15 a.m. I looked at the clock and said to myself "no way." So, I arrived at the ride at about noon, just in time to catch the first wave of riders finishing the 100 mile course. While I did feel a tinge of guilt over not getting my ass out there to ride, I thoroughly enjoyed the day.

The race itself took off and ended at a raceway type area on the outskirts of Austin. The atmosphere there was completely joyous and celebratory, with music, food, drink and about 10,000 people gathered with a common goal of supporting cancer survivorship.

When I arrived I ran into my new friends Gregg and Kyle from the Lucky Lounge team, who had helped me on Friday when I was the biking damsel in distress. They had just finished the 100 mile course in under four hours, and I sat with them and joined them in rehydrating with Guiness. I then spent the rest of the afternoon walking around the festival, meeting new people, taking pictures and enjoying the day. It was really a quite overwhelming experience to take in. I was both moved and saddened by how cancer had affected the lives of so many of the people in attendance.

At the end of the day, everyone loaded up their bikes on the busses (waiting for the bus I did get in about .2 miles riding around the parking lot. :) and then headed back to the hotel. On the bus I sat next to another colon cancer survivor, and we shared war stories. He and his "domestique" helped me pack up my bike once we returned to the hotel.

Later in the evening I joined the Lucky Lounge bike team (the captain of which is Lance's friend John a/k/a "College") at a team meeting with one of their sponsors at the Lucky Lounge. That was a treat! After the meeting I went to dinner with Gregg and Kyle and their ladies, and a few other friends. We had a fabulous dinner and a great evening spent swapping tales, discussing doping scandals and making plans to meet up again in New York.

After a very, very long weekend, I headed back to the hotel to prepare to return home tomorrow.

So, there you have it. A very quick summary of a very memorable weekend. The weekend definitely was different than I thought it would be, but in many ways better. I made so many new and interesting friends from every walk of life. So many kind, genuine, gracious people that I plan to remain in touch with for a long time to come.

Here are some of the highlights of the weekend:

* Robin Williams and Bob Roll - both completely lovely, hysterical guys who were incredibly generous with their time and commitment to LAF.

* Getting to participate on the "Conversations with Lance" panel where I got to embarrass myself in front of 2,000 people by carrying on banter with Ann Curry about my outfit and then"accidentally" engaging in gratuitous self-promotion about my LifeLab project.

* Meeting the hard working folks from LAF who put on a great weekend, and are such nice, committed people.

* Getting to stay in a hotel suite with a washer and dryer. :)

* Meeting all of the other people from Region 7B at the luncheon put on by Michael Wolfe - Michael you rule!

* The Peloton Dinner on Friday night held at an exotic game preserve (real zebra and buffalo!)

* Getting rescued by the Lucky Lounge bike boys and getting to spend time with them.

And some of the disappointments:

* That I didn't go on the ride today.

* That I didn't get to meet Doug Ulman from LAF, whom I had been so looking forward to meeting.

* That Lance wasn't more present for the event - This isn't a personal disappointment per se, but I think a lot of people were surprised and felt let down that he wasn't around very much.

All in all, a fantastic weekend, and I will be posting the pictures to prove it shortly!

Thank you so much for reading and following me on this journey.

Ride for the Roses Day 3

Today was another action-packed day.

The day started off with a group lunch for Region 7B (NYC and part of New Jersey) at Stubb's barbeque orchestrated by our fearless leader, Michael Wolf. It was wonderful to meet some of the other Peloton members who had worked so hard in our division. As I previously reported, our Region raised the most money of all (if I remember correctly.)

I ran into a fellow who had previously emailed me about the ride, and for the rest of the lunch he followed me around referring to me as the Queen. I'm not exactly sure why, but it's always nice to have people bow to you.

After lunch it was off to the convention center where a trade show was held in conjunction with the conference. There were exhibitors from the sports sector as well as the health care realm, so it was a very interesting mix.

At about 3 pm we assembled for the autograph session, where we were each permitted to have 3 items signed by Lance. I had a photograph and a poster signed, as well as a bike jersey number (I'm not exactly sure what these things are called) signed for my friend Steph. I told Lance about Steph and how I am so proud of her courage, and he told me to please tell her that he sends his best. So Steph, Lance is sending you very good vibes.

Next up was the yellow jersey reception, where all of the fundraisers who had raised $20,000 and over met for cocktails and were given awards from Lance. This was a lot of fun, and one of my favorite parts was speaking again with Bob Roll and admiring his leopard-print Virgin Mary belt. He told me he liked my admiring it. :)

Thereafter it was off to the Conversation with Lance program where I, along with about 10 other survivors, sat on a panel and asked Lance some questions after he was interviewed by Ann Curry from NBC. I got to the panel just in time for it to start, and I don't think the organizer was very pleased with me, even though I had warned her in advance I wouldn't be at the dress rehearsal. Ann Curry complemented my outfit in front of the crowd of 2,000, and I got to ask Lance about the impetus behind his starting the foundation. I managed to throw in that I had just started my own foundation too. Apologies to Betsy for misbehaving.

After the panel, we met backstage and chatted. The ever-gracious Robin Williams was back there and come up and chatted with each and every one of us, telling us how proud he was of us. That guy is so nice and I am so impressed with how down to earth and geniunely kind he is. Ann Curry also was very, very cool. Lance and Sheryl Crow were on the other side of the room separated by their omni-present security guy, and didn't really mingle much. I get the sense that Lance is kind of overwhelmed by the role he has been put in, because he hasn't actively participated that much in the weekend, which was kind of disappointing for a lot of people.

Again,definitely the best part of the weekend has been meeting the extraordinary people from all over the world who have come here to support cancer survivorship. It is very, very powerful.

Tomorrow is the last day of the event. It has been a very long weekend, but extremeley gratifying to be in the midst of such exceptional people.

Ride for the Roses Day 2

I just got in from a long day/night and even had to back-date the blog to make it still appear as a post from Friday! To whomever wrote asking where my update is, this is for you (SAB??) because if you hadn't asked I would have gone to bed without posting and then apologized tomorrow. :)

The day started out early this morning with the Yellow Jersey group photo/ride with Lance. Since I'm a night owl, the 8 a.m. departure was a bit rough, but I made it onto the bus. Everybody assembled and waited for Lance to arrive. There were some other "bike celebrities" there as well, my favorite was Bob Roll (the cyclist/"Tour DES France" guy from OLN), who is really funny and extremely nice. Finally, Lance arrived, said a few words, and then everyone departed on the ride.

My trusty Blue Schwinn, however, wasn't ready to go. Somehow in transport, the gears had gotten messed up (go figure...you'll understand when I post the pictures). Lance's cycling friend Kyle generously offered me his bike, and his other cycling friend and dentist Greg rode with me on the ride. It was great to have these two super cute expert cyclists helping out and teaching me how to ride a "real bike" which is very different from the cruiser. The ride went well, and then we took some photos which I will post later.

Tonight was the Peloton Dinner where around 900 people gathered at a former trash dump that has been turned into an animal sanctuary outside of Austin. The dinner was very festive. Robin Williams and Sheryl Crow performed. Robin Williams gaves me a big smack on the lips. He's a very nice guy. Very gracious.

I have met some wonderful new friends and have realized that this weekend really isn't about Lance and cycling. It's about all of the incredible survivors and supporters who have come together to work toward a common goal. That has definitely been the best part of the weekend.

Tomorrow is a very long day, with many activities (and 2 activities outside of the LAF stuff) so I will have a lot to report.

And I really hope that my cats are okay at home without me!

Ride for the Roses Day 1

Wow. I can't believe that this day has finally arrived. I started raising money for LAF last November, so I have been working toward this day for almost a year.

I managed to stuff my bike into a box and it (and I) made it here relatively unscathed. I did get some funny looks when I brought my bike into the assembly room. It seems everybody else has "real" bikes. Ah well.

Today was a prep day, so no official activities yet. I have been to Austin many times before, so it is nice to be back. I spent the day walking around and taking some photos and visiting with friends. Of course, we all know I'm camera cursed, so although I have my fab new camera with me, I forgot the usb cable, so I won't be able to post any photos until I return home.

The fine folks at LAF were gracious enough to put me in an incredible suite that is bigger than my apartment, plus has a washer/dryer and full kitchen with dishwasher and garbage disposal! I'm going to have to make something just so I can use it. :)

Tomorrow morning we are up early for the ride with Lance, then later in the day is the dinner honoring Yellow Jersey ($20,000 fundraising level and up) Peloton Project members. I am looking forward to that. Rumor has it that Matt Damon is the host and Sheryl Crow is the musical guest. We'll see.

Definitely will have a lot to report tomorrow!

Thank you for reading and for your continued support.

Canary Conundrum

Well, tomorrow is the big day! I'm off to Austin to meet Lance, hang out with the "cancer people" and spread cheer.

I also got a note yesterday that friday to pose for our picture with Lance we need to wear our yellow team jerseys. Ugh. I know, I should be honored to get to wear the yellow jersey, but first off yellow is not my color and secondly, the whole Lance-abee/Clonestrong thing really gives me the creeps. I'm planning to wear my pink Vote Kerry shirt and see if I can get away with that.

I really am a bad sport, aren't I? :)

I may get some bonus points though for attempting to stuff my bike into a too small box for the plane. The handlebars are sticking out through the top, but I covered them with tape. Do you think anyone will notice?

Assuming I arrive in Texas in one piece and with my bike intact, I plan to update this blog daily while I'm at the event, so please check back.

Credit Where it's Due

As the Ride for the Roses weekend is quickly approaching, I wanted to take this opportunity to acknowledge all of the people who so generously contributed to my fundraising, and make it possible for cancer survivors to LIVESTRONG.

Thank you, thank you:

Bray and Company Property Management
JT Marketing, Inc.
Stratosphere
SRM Securities, Inc.
Mrs. Ilana R. Adler
Ms. Jennifer Adler
Mr. David Alport
Mr. Bert P. Arons
Mr. Eric Besner
Jackie & Mike Bezos
Mr. Scott A. Brooks
Ms. Jacqueline Campbell
Ms. Barbara A. Centrone
Ms. Sandy Christiansen
Ms. Jacqueline A. Cohn
Mr. Jack Cole
Mr. Gary O. Concoff
Mr. Leo P. Denault
Nancy Derwin-Weiss
Mr. Anthony DiSaia, BA
Nikki Douglas
Mike and Becky Downey
Mr. Alan Dreeben
Ms. Christine J. Edwards
Mr. Hugh W. Forrest
Ms. Patricia A. Fox
Earl and Di-Ann Frederic
Mr. William H. Gabor
Mrs. Bonnie B. Glantz
Mr. Christopher Goldsbury, Jr.
Mrs. Jan Gordon
Mr. Michael A. Gordon
Mr. David B. Groce
Jenny and Lance
The Peninsula Foundation
Ms. Catherine Gund
Ms. Sherry Lynn Haynes
Mr. Peter Headington
Mr. Dale Huxford
Ms. Heather Jacksy
Ms. Judy Jensen
Mr. Jeffrey T. Kaufmann
Mrs. Elizabeth Kluger
Mr. & Mrs. Wayne & Margaret Kramer
Dr. Judith Kuppersmith
Mr. Byron R. Lapin
Ms. Ghen M. Laraya
Ms. Mary Faith Lazar
Mr. Kenneth David Lee
Mr. Jordan Lewis
Mr. Woody Lewis
Mr. Peter Limonick
Ms. Cheryl W. Longoria
Mr. Clark R. Mandigo
Rev. Brett Mathews
Mr. Andrew G. McCormick
Mr. Brian H. McPherson
Mr. Michael Mesnick
Mrs. Jane Messenger
Ms. Carole Miller
Mr. Thomas G. Mongan
Mr. Lowell Morgen
Mr. Rick Moulton
Mr. Don R. Mullins
Mr. Kevin Nakao
Mrs. Marilyn H. Nelson
Mr. Arthur R. Nemiroff
Ms. Judith Nesburn
Mr. John L. Newton
Mrs. Diane Nosseck
Mrs. Brenda Offer
Ms. Lisa M. Orman
Mr. Alan L. Ottomeyer
Mrs. Lolla M. Page
Ms. Meilin Pan
Mr. Buzz Patten
Mr. Daniel Pelli
Dr. Jane Pick
Mr. Larry Reilly
Mr. Richman
Dr. Joseph Roberts
Dr. Katha Rossein, MD
The Ryan Family
Mr. Rodney J. Sands
Ms. Erin Sax
Mr. Gregory Sax
Mr. Jerry Sax
Ms. Jodi Sax
Ms. Marcia Sax
Mrs. Rachael Sax
Mr. Stan Sax
Ginna and George Schenck
Mr. Daniel H. Schneider
Ms. Laurie A. Seymour
Mr. Robert F. Sheard
Jennifer Tsao Shigekawa
Mr. Barry A. Smith
Ms. Emily C. Smith
Ms. Lisa Socransky
Mr. Jeffrey M. Stern, Sr.
Stephanie and Jerry Stern
Mr. Richard Stim
Ms. DeeDee Sussman
Mrs. Raylene Taskoski
Mr. Robert J. Tobias
Bill & Linda Toth
Jeffrey and Leslie Veen
Mr. Franck Vermaeghe
Rev. Kyle Vincent
Ms. Judith A. Wedner
Mr. Marc M. Weisel
Ms. Shana L. Weiss-Silva
Mr. and Mrs. Whelan
Keith Williams
The Williams Family
Mr. Tony Wilson
Mr. Jerry Winick
Ms. Tamra M. Womble
Anonymous

The Politics of Cancer

Well, the Ride for the Roses Weekend is now just around the corner (actually, next weekend), so soon I will have daily reports and pictures from the big event.

In the interim, I wanted to toss out some striking information that I learned this week when I attended a seminar put on by the Judges and Lawyers Breast Cancer Alert. Consider the following points raised by Dr. Larry Norton, the deputy Physician in Chief for Breast Cancer at Sloan-Kettering.

First, as we probably all already knew, cancer research is driven by the economics of the drug industry. However, in practical application, this means that the more advances that are made in cancer research, the FEWER funds become available for targeting specific therapies. This is because as researchers narrow in on the more specific therapies, there is less of a target audience for the respective resulting drugs. Thus drug companies are less likely to fund research into their development, as it costs approximately $50 million to bring a drug to the market.

The Health Insurance Portability and Accountability Act (HIPAA) is another obstacle in cancer research. In theory, it sounds like a good idea to protect medical privacy and streamline the administrative process. However, in actuality this is a great hindrance to research and, as Dr. Norton noted, patient confidentiality was not an issue to begin with. The problem arises in that under HIPAA, doctors cannot consult old patient charts to correlate tissue samples. They can only consult charts for patients who give specific consent under HIPAA. This dramatically slows down research and makes a wealth of old data useless. The NIH has put up a very interesting web article on the topic here.
The net result of HIPAA restrictions is that doctors are "outsourcing" their research studies overseas. There are inherent problems with this practice, because people in other societies have different diets, are exposed to different pollutants, and populations overseas may be more homogeneous, thereby skewing research results.

And then there is the issue of bans on stem cell research...But I will keep my mouth shut about that one until it gets a little bit closer to November 2. :)

* * *

Wow, I've topped $26,000! Thank you, thank you!

2004 Fundraising goal: $20,000
Raised to date: $26,410

PLEASE CLICK HERE TO DONATE

Is it Just Me?

Or do other people find the following kind of unsettling. This was posted on a young adult survivor forum:

reality show looking for surviving cancer patients
Looking for surviving cancer patients between the ages of 21 and 30 for a new reality show. You could win cash and prizes. If interested please respond to post by 10/03... The NBC affiliated show, tentatively called "Pushing The Limits", brings 10 people to live together in a house and experience a wide range of adventures. The show will be shooting this October in an undisclosed tropical location. If you have any questions or are interested in participating in the show please email all_tv_casting@yahoo.com.

It's the tropical Real World with Cancer! I wonder whose genius mind came up with this one. Wow, I actually used to work at NBC...

Charity Navigator

I found a very interesting website today, charitynavigator.org, which I had actually heard of before, but only now looked at for the first time. It reviews and rates non-profit organizations. You can search the site using a variety of parameters.

What struck me as particularly interesting was the disparity of the endowments in the health-oriented non-profits versus cultural institutions, museums in particular. Most of the large museums have operating revenues in excess of $500,000,000, while most of the larger health-related charities have about $10,000,000. I'm not trying to pass judgment, just found it very interesting to note where society's priorities lie. Not to mention that all of the executive directors of the cultural institutions I looked up (e.g., the Met, MoMa, Museum of Natural History) had salaries in excess of $500,000 per year. Which I suppose is commensurate with the budgets of the respective organizations. But these are supposed to be non-profits.

And just so you all know where your donations are going, the Lance Armstrong Foundation received the highest rating, 4 stars (exceptional), and was the #1 rated cancer charity in the country.

You might want to visit Charity Navigator the next time you are considering a charitable donation. I certainly found some surprises there.