Jody Schoger: Livestrong, Armstrong, and why "finding the cure" isn't all that matters for people with cancer

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22 Responses to “Jody Schoger: Livestrong, Armstrong, and why "finding the cure" isn't all that matters for people with cancer”

  1. awjt says:

    Livestrong does what Candlelighters could not.  Candle lighters is about children specifically, and the sorrowful-sweet, almost religious sense of hope-against-hope that cancer kids don’t die.  Yes, it has its place and it was all there was in 1977. 

    Livestrong does something else entirely.  It is less like a quiet chapel where you can go to cry it out, and more like, “Let’s ride off into the sunset with our swords drawn!  We might come back!  But if we don’t, FUKKKK CANCER!!!  Yarrrrrh!!!”  Different. 

    I like Livestrong better.  More active and passionate.  But don’t take this as me knocking Candlelighters or any other cancer foundation.  Get the support you need, but go to what speaks to you the strongest.

  2. yoshua says:

    The point of the Lefsetz piece wasn’t that research is the only worthy goal. The point was that Livestrong likes to portray itself as a major funder of research without actually doing it. And that is an issue.

    • Xeni Jardin says:

      I traded emails with Bob about the piece. I know and respect him. But Livestrong doesn’t “like to portray itself” as funding research. That’s just not accurate. They are portrayed that way, yes, but that’s the point of this blog post, bub.

      • yoshua says:

        Maybe my wording isn’t perfect, but the Outside magazine piece (which no doubt you’ve seen) was enough to ensure that I’ll never make a livestrong donation.

        • Xeni Jardin says:

          That’s just fine. This blog post isn’t about encouraging you to donate to Livestrong. It’s about one specific point that matters a lot to people with cancer: we need more than just “the cure,” and it’s bone-headed to criticize Livestrong for not funding “the cure.” They provide other valuable services to people like us.

          FWIW, I have never worn a yellow wristband, nor have I ever donated a dime to Livestrong. Not being passive-aggresive, just making it clear that this post is not some sort of stealth fundraising drive or PR campaign by a Livestrong activist or whatever.

          I did, of course, read the Outside mag piece in entirety. I also spoke to people who work with the organization, and have benefitted from its services. To me, their views matter a lot.

    • PeninaD says:

      LiveSTRONG never portrayed itself as a research foundation.  That has been a major myth for a very long time. Their thrust has been the forgotten area of Cancer, support and education for those currently fighting, and lobbying for legistlation to support cancer patients and cancer research.

    • I don’t think that’s true. I don’t know anyone who misunderstood Livestrong’s mission, which is support for cancer patients, not research to find a cure, and they certainly do not portray themselves as funders of cure research. For most cancer patients, it’s not an issue.

  3. The Squidboy says:

    Good article. As a cancer-survivor (testicular tumor, lymph-node dissection, successful result…31 years ago), I applaud everyone who goes public with their disease. I tell people: if you notice something you think might be wrong, GO. SEE. YOUR. DOCTOR. NOW.

    I was lucky. If I’d waited six months, hoping it would “go away”, I wouldn’t be typing this.

    And yes, intensive care is no fun-fair. I spent three days mentally worshipping the image of a glass of orange soda with peeled orange wedges and ice cubes. Eating ice-chips with a spoon, zorched on painkillers, thinking “when I get outta here I’m making the Orange-Orange!”

    Never had one before. And, you guessed it, once I left the hospital I never created one. But that thought kept me going for three days.

    Massive props to Xeni and Jody. Cancer’s a beast–you gotta laugh as you kick it in the teeth.

  4. Great article!  Great work Jody.  Thank you Xeni for providing this perspective on the important work that Livestrong does for survivorship!

  5. AnneMarie says:

    Xeni and Jody…. I love you both.  There isn’t a better person out there to explain the differences between support organizations and research organizations than Jody.  She understands both sides and I’ve learned a tremendous amount from her over the past year.

  6. Fantastic post – thank you Xeni for giving your platform to Jody for this important topic. 

  7. Jody Schoger says:

    Thank you all for your comments and support! Survivorship and its challenges aren’t well understood by the general population.  Every  year researchers learn more about the long-term conssequences of treatment for men and women in the 20′s, 30′s and 40′s.  Livestrong is a leader in this field. That IS the point. As a survivor, I am not afriad nor do I hold back from criticizing where I believe criticism is due. As a woman who HAS survived, who HAS knuckled through the tough stuff, I owe it to each and every cancer survivor to call it as I see it. 

  8. Scone_Mason says:

    I think Livestrong does good things, and should be looked at separately from Lance the person who doped to win the Tour de France just like everyone else during his time as a competitor.  What I don’t like is Lance wrapping himself in the Livestrong flag and suggesting that if you’re attacking him for being a doping cheat, you are somehow attacked a cancer support group and you should leave both alone.  Livestrong remains a good organization even if its founder and figurehead is disgraced by his own actions. If Lance really cares about keeping Livestrong going, he should ask publicly that we not judge the organization according to public perception of him.

  9. Halloween_Jack says:

    It is possible to support what Livestrong does without personally supporting Armstrong, who may very well have doped (although I’m still finding the charges against him to be based on a combination of shaky circumstantial evidence and testimony from people who have pretty impure motives of their own for coming forward very late in the game). I’ve recently become acquainted with a group of cancer survivors who have a team for various cycling events, and they feel much the same way. 

    And I’d just like to express my disgust at Outside, a magazine that I’d formerly admired quite a lot, for jumping on the anti-Armstrong bandwagon after pumping up his legend when he was still a professional cyclist. I suspect that, like Bicycling magazine, their sales and page hits never went as high as when they could put that narrow, weatherbeaten face on the front, and they’re trying to get a few more bucks out of him while they still can. Their moral stance on this or any other issue is based solidly on what’s best for their own bottom line. 

  10. Andrew Smart says:

    I think what Livestrong does is fantastic as well. I’ve been involved with some survivorship research which you can read about here: http://www.ncbi.nlm.nih.gov/pubmed/21096515
    My life was profoundly changed by meeting cancer survivors while I was doing this research, several of them were involved with or had been affected by Livestrong. I do not have the first person perspective of having cancer, but I have lost relatives and seen what these diseases can do.

    The other part of my perspective is that I am a long time amateur cyclist. I started racing in the late 80′s and become very serious in the early 90′s – just when Lance was coming up. Even back then everyone talked about him in racing circles. I still ride a lot and race occasionally. So I have some limited understanding of what it takes to get to Lance’s level (while never coming even remotely close myself). Most serious cyclists I know are not at all surprised by doping. If you’ve tried to race at that level you understand that the human body just can’t cope. People often bring up Lance’s unique physiology and abilities – and while it’s true he is an unusually gifted athlete – you have to remember that every professional cyclist who makes his team’s Tour roster is at least within a few percentage points of this level himself. The Tour represents the best of the best. The contenders for the overall each had abilities equal to if not better than Lance. We know now that all of the overall contenders Lance not only beat but destroyed were doping. This was during a time when average speeds during the Tour were unheard of historically – and it turned out that everyone was on drugs. It may be easier for cyclists to accept that Lance doped than for the cancer community – but people need to face reality.

    Livestrong would not be what it is today if Lance had not been so dominant in the Tour. How do we separate the important work that the foundation does from the dubious past of its founder? Perhaps just as Lance must do himself – compartmentalize. The nearly psychotic Lance that raced and crushed everyone at those Tours is quite a different person from the affable, generous and inspiring guy the cancer community knows.

    In my opinion, for the sport of cycling and more importantly for the cancer community Lance needs to come clean.

  11. I spent the better part of 6 years supporting Livestrong (then the Lance Armstrong Foundation) as a member of the Peloton Project (raising money) and a Regional Coordinator, all volunteer work.  I had family members with cancer, two of whom died from it.  I was in a meeting room when a paid staffer of the LAF brought in a box of yellow wristbands and asked the dozen of us in the room what we thought.  Seems that Nike had donated 500,000 of them and the consensus at the LAF was that there would be 490,000 left over.  Shows you what we knew then.  I dropped off in 2005 due to needing to spend more time on my business, but still maintained a connection with the organization.  Then in 2006, the doc said those words you should only hear in bad dreams: “Yes, yes you have cancer.” Not me!  Yep, it was so. 

    My first contact was to Doug Ullman, CEO of Livestrong.  An almost immediate repsonse regarding doctor referrals, genetic testing, and a host of other items.  Surgery, removal of the miscreant organ, and I am a 6 year survivor. 

    I went to DC to lobby for the foundation, have made multiple connections with Doug to receive medical referrals to friends and family with cancer, and have handed out dozens of survivor notebooks and bracelets.  I couldn’t care less if Lance used PEDs.  I know what he did for me, for my family and for my friends.  I told him that I contracted cancer because of hanging around all those cancer survivors.  He didn’t believe me, but we had a chuckle over it.

    I have multiple, personalized autographed LA posters and pictures in my house, my office and a local bike shop.  They inspire me daily in my work and in my personal life.  I know who won those Tours. That’s something that the USADA and Travis Tygart can never take away. 

  12. Another cancer survivor here.  TCC in my bladder, three year survivor. And I can tell you that what we need is WAY MORE than just a cure. Cancer leaves you with all kinds of stuff to figure out at a time when you feel like you just can’t think. I’m single and my parents are dead. My siblings live in other cities. The only person figuring these things out is me. Support is what I needed.

  13. Hannukah Dreidl says:

    While preventing and curing cancer drive most of the research, if we can make cancer treatment and living with the after-effects of cancer treatment less harrowing, then there’s less pressure on curing cancer ASAP. The curative research approach is based on how awful some untreated cancers can be… and current treatment regimens rely on our fear of cancer as being worse than our fear of treatment.

    I would know, being in my 7th year of treat/watch/wait/treat for multiple genetically-caused endocrine cancers.

    Preventing cancer is, of course, the most effective cure of all (wear your sunblock, don’t smoke tobacco, clean up the environment…). But due to random gene mutations, there will always be some unpreventable cancers.

  14. abstract_reg says:

    Just to draw some connections here: Lance Armstrong is to Livestrong, as  Julian Assange is to Wikileaks. I support open information and supporting cancer patients and families. I don’t like blood doping to win sporting events, and I don’t like being a jerk to women (or running from false accusations).
    It seems that society is lacking the ability to grasp that individuals can do both terrible and amazing things in the same lifetime. We as individuals know this because we’ve all done it, but us as a group can’t seem to handle it.

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