I’ve barely talked at all about LIVESTRONG® Day; perhaps I’m finding it a little daunting. It was a humbling yet inspiring experience. Of approximately 200 delegates I was one of only a handful who had not personally survived cancer. And many of the survivors were oncologists and cancer survivors or the heads of advocacy organizations and cancer survivors – you get the picture.
It was also a whirlwind. Since I missed my morning flight on May 14th the only flight I could get left at 11:50 p.m. and had a stopover in Atlanta. I arrived at the hotel just as the training had started. Lance (I can call him that now – once you’re part of the “team” it’s your privilege*) spoke at the training – rushing in to talk and then straight out as he was between meetings and TV interviews the entire time he was in D.C. I did get several cell phone videos of him, one in which he mistakes one of the delegates for Bill Cosby. That was most funny, as you’ll hear if I ever post the video because I cackle right into the speaker the entire time (NOTE TO KATE: When taking videos, remember that you’re RIGHT NEXT TO THE LIL’ SPEAKER). It was a whirlwind for everyone from there.
There was a reception that night at ESPN Sports, most of which I missed, because I’d read my email, which included Kari’s obituary. I went to tell some other delegates that I’d like to know the way to the reception, in case I decided to come later, but that I wasn’t going to go with them. I had scarcely walked out of my room and to the elevators, when another delegate looked at my face and asked me what was wrong. I broke down, of course, and she sent her husband and son, who were visiting downstairs, and she sat with me on a couch to console me. To console ME. This incredible woman is a breast cancer survivor (diagnosed two weeks apart from her sister). I expressed to her that sometimes I felt so horrible because I just felt like everyone was sick and dying all about me; I sometimes feel like a bizarre epicenter of illness and death (even though intellectually I know that’s ridiculous). And then I conveyed how guilty that made me feel; I was never the dying one. This woman, with short, short-cropped hair, probably indicating that she’d had a round of chemo not all that long ago, said that sometimes she thought it was harder to be on the outside. Bless her.
Bless them all, actually. Everyone was like that; ready to show you what to do and how to get there. And when I did go to the reception for a moment, a delegate from Idaho with whom I’d spoken on and off that day came up to me. I know I looked lost and a little dazed. She, too, asked what was wrong and hugged me as the tears fell again. Then this incredible woman – she and her husband are both cancer survivors – said the same words, “Sometimes I think it’s harder to be on the outside.”
LIVESTRONG® Day Delegates, May 16, 2007
Needless to say, I felt unworthy in the face of these amazing survivors, yet not a single person made me feel like I shouldn’t be there or that I didn’t have something to offer. We were all there for one purpose, and they cared more about how hard we could work than which person had survived more cancer recurrences.
The next day we were to take the requests of the Lance Armstrong Foundation to the legislators for our specific states. A delegate from Virginia rescued me as I was running to the Metro and put me in the cab with him and insisted on paying the fare because “he worked with another group for whom he could write if off.” And as he had extra time, he took me not only into the building for the members of the House, but to the very office where my first meeting was to be. Kermit, the other delegate from Utah guided me everywhere else all day (as he’s been on the circuit speaking with the legislators for other advocacy groups with which he works). He’s a prostate cancer survivor, and in the second or third email I ever exchanged with him provided amazing research links. Hope for my Father. Hope that I didn’t think existed.
The meetings were productive (I hope – I’ll talk more about that later). There was an unfortunate situation that I noticed too late to fix it; I had NO antiperspirant/deodorant with me (there was a noble effort of to make my suitcases light enough as I was almost out the door – Shirleen and my Mom generously helped me and gracefully ignored the rather ungenerous, hysterical comments I made while they assisted me. Don’t worry, they’ve already obtained my most sincere apologies and they are getting presents, too). It seems that the antiperspirant/deodorant did not survive the cut (and I did not notice in time to do anything about it). At least my luggage was not over the weight limit.
I suppose I mention this in case you ever run into a Utah legislator who remembers LIVESTRONG® Day 2007 and happens to recall the distinguished older gentleman who said just enough and the younger delegate who smelled…funny…and had difficulty shutting her trap.
All day I thought about and talked about those I loved for whom I wanted freedom from cancer to be a reality as well as those who had lost their battles with this disease – this insidious killer that takes the lives of 560,000 people a year. The worst part is that about a third of those deaths could be prevented with equitable healthcare and early screening. I only had to remember that fact and I wouldn’t have traded places with anyone in the world so that I could be part of the effort to change those statistics.
That day, a bill was introduced at this press conference: The Cancer Screening, Treatment and Survivorship Act of 2007, a bi-partisan, bicameral bill sponsored by Senator Tom Harkin (D-IA), Representative Jan Schakowsky (D-IL)), Senator Olympia Snowe (R-ME) and Representative Sue Myrick (R-NC). This bill was written by the the Lance Armstrong Foundation, but they did it in collaboration with a myriad of other important cancer organizations, such as the American Cancer Society, The Leukemia & Lymphoma Society, href=”http://cms.komen.org/komen/index.htm”>Susan G. Komen For The Cure, etc., etc., etc.
Press Conference, LIVESTRONG Day, May 16, 2007
(from left to right) Rep. Sue Myrick (R-NC), Rep. Lois Capps (D-CA), Rep. Jan Schakowsky (D-IL), Senator Tom Harkin (D-IA), LAF Chairman Lance Armstrong and LAF President Doug Ulman
(in the background) LIVESTRONG® Day Delegates
After the press conference, this bill was introduced in the House and the Senate. One of our jobs as LIVESTRONG® Day Delegates was to visit our respective state Senators and Representatives and ask them to support this legislation. We requested particular funding increases (entailed in the Labor/Health and Human Services Appropriations Bill); we requested a 6.7% increase for important research at the National Institutes of Health (NIH), 6.7% for the National Cancer Institute (NCI) and a $136.6 million dollar increase for critical cancer programs at the Centers for Disease Control and Prevention (CDC). Blatant requests for funding tend to make legislators frown. Imagine that.
Before it gets completely buried in this seemingly endless post, I wanted to thank everyone for there support on LIVESTRONG® Day. My most heartfelt thanks to:
Now, almost exactly a month after LIVESTRONG® Day 2007 (May 16, 2007), I want to tell you some things you can do to help. It is surprisingly easy:
Please send a message to your State Senators and Congress people telling them how important it is to support the The Cancer Screening, Treatment and Survivorship Act of 2007. If you follow this link, it helps you send a message to your specific legislators with suggested text for an email letter that you can build upon or send it as is.
The three main focuses of this bill, in a nutshell are 1) Expanding Access to What Works, 2) Ensuring Access to Treatment and Appropriate Survivorship Care and 3) Accelerating Discovery. Please contact me if you’d like to know more. Also, you can visit the Library of Congress Thomas Locator (enter bill number S1415 for the Senate and H2353 for the House) and read the text of the bill and see where this legislation is in the process.
Now Utah folks, I should tell you that almost ALL the legislators with whom we met indicated that they were interested in co-sponsoring this bill. NONE of them have done this do far. Mind you, one of the Senators is on the Senate Finance Committee (where the Senate version is now) and one Representative is on the Energy & Commerce Committee (where the House version of the bill is currently). I’m afraid that I do not know whether or not this precludes them from co-sponsoring the bill; nonetheless, I don’t believe it hurts to send a message saying that, as their constituent, you’d like their support).
I should also tell Utah folks that despite the nicknames that I’ve had for Senator Orrin Hatch over the years (they aren’t THAT bad), he instigated a bi-partisan “Dear Colleague” letter that asks fellow senators to support the 6.7% increase for the NIH in the Fiscal Year 2008. There are forty-eight signatures on this letter. Ironically, this was a letter that we discussed extensively in our advocacy training, though the LAF was under the impression that it was the “Kennedy” letter and asked us to find out if our Senators had signed the document. I have to say – I was proud to be able to provide the Foundation with a copy of the letter with all the signatures about which they’d wondered.
Lastly, though certainly IMPORTANTLY, please, if at all possible, DONATE MONEY TO THE LANCE ARMSTRONG FOUNDATION. And, as you can imagine, I will now suggest a most excellent manner in which you can do this: Please support the LIVESTRONG® European Cycling Team! ALL the funds go directly to the
Lance Armstrong Foundation (and very soon PRIZES will be involved). And PLEASE – don’t worry if you can only make a tiny donation; every little bit counts.
I think supporting the team also makes an important statement. I strongly believe that cancer should be a National Priority; it’s the NUMBER ONE killer in this country for individuals under the age of eighty-five. But also, I think cancer must be an INTERNATIONAL PRIORITY; it is a world killer to whom no one is immune.
Wow. That’s no doubt enough for now. As a last message, I’ll ask you to watch one of the short speeches that Lance Armstrong made at the LIVESTRONG® Day 2007 press conference:
*I should confess right here: No, I did not ACTUALLY meet Lance Armstrong. I shared the same air with him three or four times, but I barely missed every opportunity in which to shake his hand and say… hmm… and say… well, probably too much with a percentage of it being completely unintelligible. Another times, I hope.