Monday, November 26, 2012

LIAR LIAR PANTS ON FIRE

I'm a bit irritated and I don't know if I want to head to Tampa to converse with a few researchers or if I should head to the offices of the Wiley Online Library to bitch slap the person who wrote the headline for the story.

Chemobrain.  It's where this all began.  It's how I came to this place in my life.  Because I KNOW that chemobrain is real and it can be severely limiting and it can have a long term detrimental impact on those who live with this, I'm pissed off. I've been validated by many of your comments.  I've been validated by many more of the personal email messages sent to me because some were fearful of sharing their issues in a public space.  EVEN anonymously.

For years, chemobrain been little more than a punchline in a joke.  We have clawed our way out of obscurity and into REAL science.  Researchers are studying.  They see physiological damage.  Drugs previously thought to stay out of our brains are now believed to be crossing the blood brain barrier.  The first long term results of the cognitive issues experienced by those whose cocktail of choice was CMF were recently published.  They observed problems TWENTY years post treatment. Others observed shrinking gray matter.  And that matter, matters.

They saw deterioration of the the myelin sheath due to the destruction of the cells needed to regenerate that sheath. That "sheath" is necessary to keep things moving smoothly in our brains.  I wrote a long post about this wherein I likened the myelin damage to a ski mountain.  It's mostly silly but if you scroll down to the part in italics, you will get a sense of what is happening. It's a physiological explanation as to why our brains sometimes feel like they have stalled or are in need of a reboot.....

Did you ever wonder about the color scheme for this blog?  Why red?  When I see a headline like this, I see RED:

in case it's not clickable, cut and paste:  http://onlinelibrary.wiley.com/doi/10.3322/caac.21164/abstract

I didn't get that memo.  Did you?  Yeah.  Didn't think so.  Really??  REALLY????  WTF?  We are just getting to the point of some sort of quasi-acceptance in the medical community and we have begun scratching the surface with the crowd who infamously says: "I didn't have cancer, what's my excuse" and THIS appears in a medical journal.  I'm calling bullshit.

This is a prime example of why it is so essential to dig beyond the headlines and the soundbites.  Most of us rarely get past that headline.....at which point, the parroting begins.  The better headline was in Oncology Times:

"Chemobrain:  Persistent Deficits Documented Post-Chemotherapy"


This should serve as a lesson to each and every one of us.  This is the exact same study and in many places, the exact same article.  In each case it IS essential to understand that this was an analysis using data from existing studies.  But still, doesn't the first title sound a bit dismissive? Yes.It.Does.

The second title is not only more accurate, but it doesn't allow the nay-sayers to quote the title and start minimizing our struggles while their breath is still hanging in the air.  That second title says, "You got issues, maybe you want to read further" and I did.  Some issues are not accounted for and there is an editorial which was written to "clarify" some of the observations.  The editorial is a nice way of saying, "There's far more to this than meets the eye."  

Here are a few of my replies.  Written by others.  Researched by the best and the brightest.  There are some names you should know.  Those would be the researchers who have been at this the longest, who have dedicated their careers to investigating the causation and thus, hoping to find ways to repair the damage.

Post Chemotherapy Cognition Issues......  I'm going medical with the official sounding name.  Just for today I'm afflicted with PCCI.  Bearing in mind I DO suffer from "PCCI" and it is FAR from "mild" I'm throwing out the information that jumps into my head ....  Anything that mentions ANY of the following people is fair game for "quotable with minimal fact checking."  And, anyone Idelle Davidson chooses to add to this list because she is my go-to expert falls in that same category with the fact checking.  In no particular order, not ladies first, not alphabetical, just the way they fell from my brain:

Christina Meyers
Tim Ahles
Mark Noble
Patricia Ganz
Dan Silverman

That's a terribly short list and I know it needs to be expanded upon but if I distract myself hunting down names, I'll never finish this post.  Ditto, if I try to find the best links with the latest information.  Feel free to add.

Start at Idelle's:  http://yourbrainafterchemo.blogspot.com/p/how-to-use-this-blog.html

From the Cancer Connect website:  http://news.cancerconnect.com/chemo-brain/

From The Mesothelioma Center:     http://www.asbestos.com/news/2012/10/09/mesothelioma-chemo-brain/

You can even try some of the info links on this blog:  http://chemo-brain.blogspot.com/p/information-links.html
(One caveat: I've not been very diligent in keeping that page updated....)

If you remember nothing else, remember what is important:  Sound bites and story titles can be twisted to suit the agenda of the person telling the story.  Read the story.  If you don't understand the information, hell, bring it here.... I may understand it less but I promise, I'll try to find out what it means....  Just don't be a title reading page turning parrot and for that matter, don't you EVER let anyone else try to do that to you, either.....

Hell, you can bring THEM here, too. Being bullied into "It's a load of BS land?"  I'll gather a posse and get right on that, too.






17 comments:

  1. We know chemo brain is real and lasting! Thanks for keeping up the fight for recognition.
    Meg

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    Replies
    1. You bet..... I refuse to allow anyone to diminish what so many of us continues to experience...

      AM

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  2. If I had known then what I know now about chemo brain and my loss of career coupled with the severe pain of 24/7/365 for over 2 years of periferal neuropathy I would have not had ANY treatment. I would have racked up a huge credit card bill and traveled all over the world.

    Now, I'm a burden to my family, cannot drive, have all sorts of pain and get lost all the time when I try. I cannot perform my career so I cannot earn money so we are worse than broke. We cannot survive on one income. We needed mine.

    I'm looking for a way to end it all. I'm thinking pills will be the best way.

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    Replies
    1. I have been away for most of the day.... Anonymous, I hope you are following this thread.....

      PLEASE email me..... anncicc@gmail.com ....

      I can't possibly understand what you are going through but I can listen (and I can try to find ways to help?)....

      Please, please contact me...

      You are in my thoughts....

      Sending you MUCH love,

      AnneMarie

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    2. Anonymous....

      There is a twitter chat going on right now about palliative care which is NOT hospice.... it's pain management. Please let me know what I can do to help.

      I care.

      AM

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    3. Thank you. I'll look into palliative care. Maybe I can get it. Bit there is nothing for PN or loss of a loved and financially needed career.

      I find it comforting to think I have a way out with the pills. I can't stand all this. I used to have hope but now it's just pain and impoverishment.

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  3. Anonymous, PLEASE hang in there!! You are not alone. Please, please find someone you can talk to. Do you have a Cancer Support Community near you? They have support groups and offer free counseling. They are also on the web at www.cancersupportcommunity.org Or you can call them at 888-793-9355. It took me two painful years to discover there was actually an oncology social worker in the oncology department. I have been seen psychiatrist and other therapists. If they didn't seem to "get it" I saw someone else. I've sought out support on Facebook for Neuropathy and Fibromyalgia. I get information on Chronic Pain and Osteoarthritis. When the chemo damaged brain is functioning, I try to keep myself as informed as possible and inquire with my doctors about any new possible treatments. I recently finished a pain management program that was very helpful. It gave me some tools, other than prescriptions, surgery, and "suck it up", to help me deal with my ongoing constellation of issues. Its been over 5 years for me. I don't know that I would say that I have "improved". I do know I am on more medication every year. But somehow i guess I am learning to live with it and am working on reinventing myself. Sometimes I think the lack of memory from the chemobrain is actually a blessing. At 53 the prospect of employment in a new career, let alone one that will allow me to set my own hours, work without standing or sitting for long periods, use my hands.....well, you get it....slim chance. None-the-less, I have found encouragement and support through volunteering which has allowed me to meet some awesome women, like AnneMarie. It is stories like yours that need to be plastered across every pink ribbon we see in October. This is the real effect of breast cancer. People need to know this. Please, write back to AnneMarie and let us know you are ok....

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    1. Deb,
      Thank you so much for writing such a thorough reply to anonymous. I am extremely concerned and I hope I hear from the person who left that comment.

      Miss you....
      xoxox

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    2. Thank you. I've been to Many doctors. I know how to discard the ones that don't care.

      Delete
  4. Anonymous,

    I am a pediatric oncology nurse practitioner w/ late effects being my area of concentration. I have encountered late effects professionally, but also personally as I am also a survivor of Ewing's Sarcoma in 1978 at 8 years of age. Most recently, I underwent heart transplant as my heart was irreparably damaged by the radiation and chemotherapy used to successfully treat my malignancy.

    Late effects, like chemo-brain [and] heart failure, are the jagged pills of curative therapy [and] at present, there is no way to predict who will be affected or to what degree. Although those of us who are affected can certainly attest to their validity [and] our realities, there is very little research being done to identify effective management strategies much less preventing them altogether. It's as if we've caught the cure, but don't know what to do with the aftermath.

    I, too, have not been able to return to my job due to the risk of infection posed by the hospital setting. My job was my calling [and] I was devastated. My income was a tremendous benefit to our family, but losing me, my presence in their lives would have been catastrophic: I am far more valuable than any amount of money I could earn working 9-5. Yes, it means sacrifices have been made [and] losses incurred. We have had to acknowledge and grieve each one and grief will NOT be rushed. I beg of you please do NOT rush your grief process by intentionally taking your life.

    Reach out; allow yourself to be known; allow yourself to be supported and encouraged by those who face similar circumstances whether through #bcsm, or those like myself, who are working feverishly to being late effects to the forefront of the minds of clinical researchers through the raising of awareness.

    I serve as the Chief Executive Officer of myHeart, yourHands Inc., a 501 c[3], dedicated to raising awareness re: the late effects, the consequences of cure. I would welcome the opportunity to share your story [and] the impact this particular late effect has had on your life, quality of life. Chemo-Brain mirrors the neurocognitive dysfunction we seen in the pediatric world among children who survive brain tumors and/or receive chemotherapy directly into their cerebrospinal fluid. There are supportive services for these children/adolescents/young adults; therefore, I have to believe there is an avenue to support adults such as yourself.

    I also wanted to mention www.TreatmentDiaries.com [TD}. TD is a place where you can set up an account anonymously, journal the thoughts of your heart, then choose to share them publicly as a means to build a network of emotional support among individuals who can empathize with your circumstance or to keep your journal private, for your eyes only as a record that you can look back at, reflect upon across time as you walk through your daily life.

    Finally, I ask your forgiveness as I am certain I have spoken about that which I know nothing of. I can not imagine the weight that you are carrying each day, and I know there are no easy solutions and suggesting a silver lining has no place in this discussion. I just know that if you are considering bringing your life to an end [and] leaving those who love you behind it MUST be excruciating for you.

    Please don't shoulder it alone; please let someone know who you are so that steps can be taken to help you.

    Simply
    Stephanie

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  5. To anonymous.....

    Today's blog is for you.... Nov 27th...

    To all....

    And.... here is something that just hit the news feed specific to chemobrain.... it's popping up all over the place but this is where it was presented:

    http://www2.rsna.org/timssnet/Media/pressreleases/pr_target.cfm?id=629

    Or google the words "chemobrain lagos" and article after article will appear..... Lagos? Another NAME TO KNOW.... Rachel Lagos .....

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    1. thank you for caring. it helps.

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    2. I'm thankful you shared your feelings and found some consolation here.

      xoxox

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    3. Dear Anonymous,

      Any chance you can let us know where you're located? I am aware of a study being done on peripheral neuropathy at M.D. Anderson in Houston. The last I spoke with the researcher, they were getting VERY strong results. I could connect you with her if you happen to be in that area. Also, here in Cleveland, we have been getting very positive results with cognitive impairment, fatigue, sleep impairment and psychological distress. Our paper is under editorial review now, so I am not able to say more than this now, but hope to be able to let this group know more before too long. Sorry for this teasing hint, but I don't want to lose the chance to publish by jumping the gun on what I say publicly.

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    4. Jean....

      I will contact anonymous. I did receive an email from her so I can get in touch with her. I didn't see your comment until now. The blog was neglected while I was in Texas! Thank you for reaching out and I am anxious to see what is happening in Cleveland.

      AM

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  6. AnneMarie
    Your passion is like fuel in a raging fire. Where would this world be without people like you and Stephanie? I shudder to think. I sometimes feel like one of those white wipe boards that has suddenly been cleaned before I had a chance to read it! I experience a moment of panic thinking I have lost my freaking mind. Thanks so much for all you do.
    Carla

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    1. Thank you Carla...

      And I just read through Stephanie's response very slowly. She is one very special person, wouldn't you agree?

      Hugs and love to you,

      AnneMarie

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