Friday, June 22, 2012

I'M LOU.... SHE'S BUD.

I'm reprinting something that was written by my friend, Idelle Davidson.  She blogs here and she wrote an excellent book about living with chemobrain which you can find on her website.  Recently, she had the privilege of attending a survivorship research conference in Arlington, VA.  Not only did she attend, she was asked to speak and boy did she ever speak!  We probably could have done a great version of Abbott and Costello's, "Who's On First? The Chemobrain Edition!"

While I'm the joke cracking half of that duo, whenever anything hits the news, if you listen very closely, you might hear, "Hey AAAABBBOTTTT!"  That would be me... sending out the cry for Idelle so we might collaborate on the news.  She's a good decipher-er.  You'll see.  If you follow twitter, you may have already seen this but some of you don't and others (like me sometimes) might miss something in the tweet stream because, oh, I don't know, we got distracted by a tweety bird....

Speaking about twitter and then I promise, I'll hand it over, there was a designated hashtag for anyone wishing to keep up with the information.  This is the beauty of twitter.  People who are in the seminars are sending messages so those of us who are not at the event can follow along in real time.  When I saw someone's tweet about "Chemobrain is real," I KNEW they had to be listening to Idelle.  They were.  Idelle confirmed it for me.  A number of tweeps were sending out information.  The lesson there?  IF you find yourself in an auditorium and see someone on their phone and it appears they are text messaging, don't jump to conclusions!  They may be sharing that event with a global audience.

Here's Idelle... with some brilliant observations, a few suggestions and one really great idea.  She really is my hero.  Her blog post is titled, "ASCO, Where Have You Been?"  There are a number of people now wondering the same thing after Idelle dug up some excellent material to supplement her talk.


Welcome to My Blog



Last Thursday I was in Arlington, VA at the National Cancer Institute’s 6th Biennial Cancer Survivorship Research Conference. I had been asked to speak about cancer and cognition. Specifically, the organizers wanted me to comment on the “disconnect” between the research/medical community and the patient experience.

That wasn’t hard to do. As I told the audience, I know our book has made a difference. Yet I continue to receive letters from patients and former patients telling me that although they now understand what’s happened to them cognitively as a result of treatment, they can’t seem to get their medical teams to take their concerns seriously. A common thread is, they bring up their memory issues with their doctors only to have their worries waved away, dismissed, as if it’s all a figment of the imagination.

To illustrate this disconnect, I showed a slide of a sample patient consent form that I downloaded from the American Society of Clinical Oncology (ASCO) website. ASCO offers this form as a service to their members. Oncologists can then use the form to have their patients acknowledge the risks of chemotherapy.

So what’s on this form that patients are asked to sign? Basically, it’s a list of all the potential side effects (you'll find the actual document here): 

  • Nausea/vomiting 
  • Hair loss 
  • Low red blood count 
  • Fatigue 
  • Risk of infection 
  • Risk of bleeding 
  • Constipation 
  • Diarrhea 
  • Mouth and throat sores 
  • Skin effects 
  • Muscle/bone effects 
  • Nerve effects 
  • Kidney/bladder effects 
  • Sexual effects 
  • Heart effects 
  • Lung effects 
  • Reproductive/fertility effects 
  • Other 
It doesn’t take more than a single glance to see what’s missing. And of course, that would be language such as “memory or other cognitive effects.” That warning has not been incorporated into the consent document even though cognitive issues can be far more debilitating than hair loss and nausea.

Now this is ASCO, a 30,000-member strong organization made up of oncologists and oncology professionals that sets the standards for patient care worldwide. It is their mission to advance the education of physicians and other professionals who care for cancer patients.

And even though ASCO is highly respected and tremendously valuable, at least on this point, it doesn’t seem like it’s doing a very good job. If the professional association that sets standards for oncologists doesn’t seem to be aware of cancer-related cognitive dysfunction, is it any wonder that clinicians in their hospital and community practices dismiss their patients’ concerns as frivolous?

Adding another bullet and line of text to this 2008 consent document would take two seconds. But it’s really not about that. It’s about awareness. It’s about leadership.

11 comments:

  1. Bud, why do I find myself grinning from ear to ear every time I read ANYTHING your write? You are so darn hilarious and smart. Can I have some of what you're having? Thanks so much for re-posting this and for linking to my blog and for being there and writing the way you do. I'm not great on mushy stuff (that's why I'm Lou) but you know how much I value you and all the good work that you do. Thanks for being there, my friend. Love and hugs.

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    1. Just want you to know I had to do a ten minute google detour. Bud's the straight guy. The SMART one. LOU is the bumbling fool. Aren't I, Lou in our duo?

      Having said that... when I reverse things in my head, they remain reversed. That's another chemobrain nuance. I did a post on the roadrunner and the coyote (when I saw both in Tucson). Started fine, ended with them in the wrong bodies.

      Was this Idelle's brain on chemo????

      Love and hugs to you,
      xoxox

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  2. I meant, Bud...too early here in L.A. BTW, here's the original "Who's on First" clip on You Tube: http://www.youtube.com/watch?v=DtQZZdJzJ5Y

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    1. Yeah YEAH.. blame it on the time ;)

      I transpose numbers. I transpose letters AND I transpose "Pairs" ....

      Just sayin'

      xoxox

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  3. OK, you are both smart, so you are both Buds (how true is that?).

    Anyway, I LOVED this posting about a topic near and dear to my heart. I have Idelle's book (signed; it was a book giveaway that I won), and I love it. It validates so much of what I had been telling doctors over the years.

    I'm incensed about the lack of informed consent on cognitive impairment. Before chemo, nowhere did I see that term. I am infuriated. And it's long-term cognitive impairment, which really sucks, as you well know.

    Thanks for your constant quest for the truth, my friend.

    xoxo
    Beth

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    1. Beth,

      We are all Buds... love that observation. I Idelle's investigative skills have given a few people reason to being questioning what is going on... I love that we are a growing community of intelligent women who are not afraid to speak our minds in quest of the truth hoping that the conversation changes so we might find a better way.

      xoxox

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  4. Thank you for keeping this message alive. It is also serious because this effects close personal relationships.....peace and hugs

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  5. Thank you for keeping this message alive. It is also serious because this effects close personal relationships.....peace and hugs

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    1. Denise....
      Yes, you are so right and that is definitely worthy of its own conversation. Validation is so important. And, if loved ones can't validate or even "accept" this..... I've learned to deal with that. What I can't deal with? Having someone "dismiss" this as "a convenient excuse" ...
      Big hugs.... I love your New York adventure, too!!!
      xoxox

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  6. What a great post from a savvy observant and eloquent writer! Cognitive impairment is so not recognized in our society as a side-effect of chemo. Are we in denialsville on this issue, too? One of the huge side-effects listed by my surgeon before he inserted a catheter into my neck for chemo infusion was pneumothorax. And guess who got that? A punctured lung is painful beyond belief and requires more chest x-rays (note: radiation) than a nuked girl like me would like to expose herself to. But handle it I did. If people want war stories, we are full of them. Let's keep up the discussion so that side-effects don't get brushed under the table like so many other cancer crumbs. xx

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    1. We have to all keep talking until things begin to change. We know what we are experiencing and it extends far beyond the chemobrain issues as you pointed out here. A punctured lung???? People seem to forget we are being POISONED in our quest for NED. I hope your chest pain is easing a bit.
      xoxox

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