Saturday, February 23, 2013

what is and what is not

I'm struggling these days with what is my responsibility and what is not.

Am I my brothers' keeper?  Yes, and my sisters' keeper, too, though sisters have uteri and we all know that complicates matters.

Am I responsible, personally and in my life as a citizen, for my brothers' and sisters' repeated mistakes?  No.  Only for the first, oh, I dunno, six?  Sure.  Six.

Am I responsible for responsibly arguing my case in the face of despotic hate?  Yes.

What about plain old everyday I-hate-your-guts {spit::spit} hate?  Yes.  And no spitting back in private, either.

Am I responsible for maintaining my rationality at all cost, despite the piling on of fast lies and ignorant assertions -- in all cases, or only in cases where the verbiage has an ill-prepared and gullible audience?  Yes, and yes, in all the cases, no matter how it breaks my heart.

Heartbreak is no excuse for anything.

Am I responsible for keeping my heartbreak to myself, as the world is over-burdened with those refrains?  I think "yes," and I do otherwise.

Heartbreak is no excuse, but it is.  So I try harder.

Am I responsible for learning something every day, or however many years it takes, some things being mercurial, some things in constant evolution, revolution?  ["Yes, but you are also responsible for your own mercurial nature, your own whirligigs of revolutions, and for how things change," says Stern Me to Me-Eyeballing-The-Exits.]

Am I responsible for rushing, laughing, excited, to share it with you?  No.

Am I responsible for listening, fascinated, laughing, and excited -- eyes a-gleaming, when you run to me to share your new-found, new-learned thing?  Yes, yes, yes, I am.

Am I responsible for taking your inventory?  No.  But I do it anyway.  Guffaw!

Am I responsible for being as Seussian as possible, whenever possible?  Yes, as are we all.

Am I responsible for the Earth, the Moon, the Stars, and all the jazz?  Probably, as we are all Seussian, and Planetary Citizens -- both -- grooving to the beat, the beat, the beat.

But I'm not reponsible for your happiness, only for doing my best not to ever pose as its obstacle, only for ever cheering it on.

So how did this become "my" side, and that, "yours"?

Wednesday, February 20, 2013

PLoS and Open Access: Research is finally getting sexy

open access logo
ripped off from PLoS ONE, Open Access, and the Futureof Scholarly Publishing

Just assuming that CRPS was more of an orphan disease this year than last, I had not noticed that my MedWorm feed results were no longer arriving. Either MedWorm has gone kaput or they're renovating, but there's been nary a word of CRPS happenings since very early in January.

So while they sort that out, I'll just do the oh-so-hard work of plugging in a few terms into the Entrez cross-database search engine at NCBI. Excuse me while I wipe the sweat from my brow.

And puh-leeze, if you're tech savvy enough to search out blogs 'n such, you're plenty capable of sorting through a couple of hundred articles and thousands of abstracts to find *exactly* that aspect of CRPS you're researching.

So here is a link, an exciting one, to PMC's (that's PubMed Central, part of the US National Library of Medicine, National Institutes of Health) current listing of 719 articles "about" CRPS that are available FREE, online.  You know how I feel about FREE!

----->> PubMed Central: free, full text journal articles -- and please note that I did a simple, one-item search.  You'll be richly rewarded the more you hone your search terms, though it does help to "go large," and then narrow down.

Just to share a bit of what you can expect as a reward, the first article that pops up is titled "Complex Interaction of Sensory and Motor Signs and Symptoms in Chronic CRPS," and its introduction is very layperson friendly:

Complex Regional Pain Syndrome (CRPS), mostly regarded as a neuropathic pain disorder, is typically evolving after a minor trauma of the limb . Besides pain, CRPS displays a multifaceted clinical pattern consisting of vaso- and sudomotor changes, as well as trophic and motor disturbances, edema and somatosensory changes . In consequence, many patients sustain impairments of hand function persisting even many years after the initial trauma . The clinical presentation, and therefore the criteria leading to the diagnosis of CRPS, are mostly applied to patients with recently emerging, “acute” CRPS . Much less is known about the occurrence of the respective signs and symptoms when the initial phase of the disease subsides. Furthermore, the underlying pathophysiology of CRPS is still under debate . Some authors stress the role of peripheral pathomechanisms, namely peripheral neurogenic inflammation and small fiber axonal degeneration . In addition, autoimmune dysfunction seems to be involved in CRPS pathomechanisms . Contrariwise, a distinguished body of literature supports the involvement of the central nervous system in terms of sensory as well as motor adaptive changes. More generally, the level of accompanying chronic stress and depression might also account for somatosensory changes and the level of ongoing or evoked pain particularly in chronic pain patients. However, the degree of stress and depression in patients with chronic CRPS is not well characterized. Recently, it has been suggested that the pathophysiological mechanisms of CRPS follow a distinct time course, with a preponderance of peripheral inflammation and beginning of small fiber degeneration in the acute phase, and progression of small fiber degeneration as well as central pathomechanisms dominating the chronic phase of the disease . It is still unclear to which degree the underlying pathophysiological mechanisms predict the clinical presentation of CRPS and the resulting outcome of the disease, although recent studies suggest an interdependency between the clinical presentation, the underlying pathophysiology and possible consequences in terms of resulting impairments. Namely, differences in skin temperature might facilitate the discrimination between an ongoing peripheral or central pathophysiology. . So far, many clinical studies focused on the characterization of different specific aspects of the disease, for example the degree of neurological changes or the description of motor impairments . Furthermore, many studies mixed patients with short duration of the disease with those suffering from chronic CRPS. Up to now, a comprehensive survey linking quantitative sensory changes to CRPS symptomatology and the degree of resulting impairment is still unavailable for patients with chronic CRPS. In order to expand the knowledge of clinical characteristics of chronic CRPS and the level of concomitant stress and depression, as well as to characterize the degree of resulting hand impairment and disability, this study was performed.
Published by PLoS ONE, the entire text is there.

And now a word about PLoS ONE, and why these things get me so excited, and if you are a citizen trying to advocate for yourself or a loved one, trying to help your health care professionals out when dealing with an obscure disease, or at least, a non-sexy and underfunded one, why you should be supportive of them and excited, too!

Posted on  by David Knutson  
PLOS applauds the efforts of legislation sponsors Sens. Cornyn (R-TX), and Wyden (D-OR) and Rep. Doyle (D-PA), Yoder (R-KS) and Lofgren (D-CA) with the introduction of bipartisan and bicameral legislation that will maximize the impact of federally funded research. The Fair Access to Science and Technology Research act (FASTR) act states: 
”The US has a substantial interest in maximizing the impact and utility of the research it funds by enabling a wide range of reuses of the peer-reviewed literature that reports the results of such research, including by enabling computational analysis by state-of-art technology. 
The Federal Government funds basic and applied research with the expectation that new ideas and discoveries that result from the research, if shared and effectively disseminated, will advance science and improve the lives and welfare of people in the US and around the world.  The internet makes it possible for this information to be promptly available to every scientist, physician, educator and citizens at home, in school, or in a library” 
Increasing access to research outputs delivers benefits for the economy, for medical patients, for innovators and for the general public. In Tuesday’s State of the Union Speech President Barack Obama referenced the Human Genome Project, which has generated both good science and $141 dollars returned for every dollar spent. In addition, one of President Obama’s distinguished guests was Jack Andraka, a high school sophomore, who won the 2012 Intel International Science and Engineering Fair for his creation of a new method to detect early-stage pancreatic cancer. His discovery was made possible by using the research outputs he could access freely online. 
We are seeing a proliferation of increased access, from new journals to new guidelines and legislation. In the UK, PLOS strongly supports the efforts of the UK Government and Research Councils to increase access to publicly funded research. We applaud the development and implementation of policies in Ireland, Denmark, Argentina, Australia and in the European Union. We stand firmly alongside any organization or initiative that attempts to eliminate unnecessary barriers to the immediate availability, access and use of research, and we look forward to working with them in the journey towards full Open Access. 
We invite you to join us in the PLOS mission to lead a transformation in research communication for the benefit of all. We urge you to call, write or email your congressional representative and express your support for FASTR. Click here to read the Fair Access to Science and Technology Research Act.

Bipartisan, bicameral legislation, oh, excusez-moi, I've got the shivers!  If you have CRPS or any other underfunded, under-researched, and terribly depressing disease that makes you search for help and hope online at 3 AM, then support this legislation, and work to free up information.  Take a measure of control back!

Strike a blow for Quality of Life!  QOL!  ADL!  PDQ!  ASAP!  QID!  NPO!  Download and print a copy of the legislation and use it as the basis for some incredibly painful but life-affirming bit of physical therapy.  I dunno, practice turning the pages, one by one.  Lift it over your head.  Drop it and pick it up.  Throw it at some lazy, whiny person! {::ducking::} Woo hoo, life is grand!

Well, it probably shows -- I'm feeling rotten and pretending it just ain't so.  As in, seriously rotten, should probably head for the hospital rotten.  But I'm trying, also, to stick to The Plan -- minimal interventions, just putting out the 3-alarm fires, and letting this bleeping infection in my bones and the CRPS take their course.  It's a hard habit to break, wanting to call for help for every crisis.  

This is where my well-known zen-like, calm and centered self comes into play.

Oh, shut up.  I can try!

Daisy Love Merrick's Memorial Information


Daisy’s Memorial Info

Date: Saturday, February 23
Place: Reality Santa Barbara (At the Santa Barbara City College Sports Pavilion)
Time: 3 pm
Attire: See words below from Kate
Webcast: Daisy had many friends and supporters around the world for which we are so thankful. In order to honor these relationships we will be streaming her memorial live. Tune in at Pray For Daisy to watch it.

A few words from Kate:

Dear Friends…

Early Saturday morning we had the privilege of witnessing Daisy’s departure from earth to a place outside of time and space where her joy is complete: heaven.

Our darling girl gave us kisses at midnight, with lips dry from thirst and hot with fever.  Tiny and sweet, the words “that’s awesome” came from her tired body after letting us know she was having good dreams. She is safely home… Finally well.

I have refrained from giving details of her suffering over the last few weeks, as it was immense.  Out of respect for her dignity and loveliness we have been keeping these painful moments sacred.

Thank you for your partnership in loving our girl. Please know we are broken hearted for ourselves but so happy for Daisy, who is with Jesus in paradise able to run and eat and play with abandon. We believe that wholeheartedly, and as they say in Narnia, she is going further up! And further in!  She left the Shadowlands for a place more real in every sense.

Please join us as we celebrate the strong, kind, brave, goofy, thoughtful, amazing girl we call Daisy Love. Please wear what you feel best in; sandy feet and boardshorts, tutu and snorkel mask, or the prettiest dress in your closet. Wear black only if you must, but I’m wearing what Daisy would like most.  On her last night on earth, she requested we watch “The Hobbit” (70’s version) and dress like hobbits.  If ever there was a girl confident in her own skin, it was her.  Among her favorite ensembles are animal ears of all kinds, astronaut, flightsuit, monster, pirate, dinosaur, Indian, mermaid, bear, cowgirl, fireman and explorer.

Feel free to laugh and cry and hug. There is no single way to grieve. And while we miss her on earth, we will pick up where we left off when I have the privilege of going to where she is, in the presence of God where there is fullness of joy.

My final request to all who read this blog: love. Love your babies, your husbands, mothers, sisters. Love each day like it’s your last. All you mamas out there, you have been entrusted with the precious gift of a human life who depends on you. Enjoy your gift. Breathe in the scent of your child’s hair, breath. Let them cook with you and make a mess of the kitchen. Play hide and seek with them, build sand castles with them, take them on picnics, read to them!  Listen to them, value and respect them, never shame them.  Your words they will carry with them their whole life and you have the power to give them wings or stunt their growth. Motherhood can be tough but it’s worth it. It can be exhausting, boring, tedious, but never for long. You blink and they’re grown. It has been my honor and privilege to love Daisy these last 8 years. I’m thankful for every minute; the joyful and the terrible alike.

“I know The Lord is always with me. I will not be shaken, for He is right beside me. No wonder my heart is glad, and I rejoice. My body rests in safety. For you will not leave my soul among the dead or allow your holy one to rot in the grave. You will show me the way of life, granting me the joy of your presence and the pleasures of living with you forever.” (Psalm 16:8-11 NLT)

Monday, February 18, 2013

Something to consider, Dear Readers

No offense to my "cancer kids," but if you all would puh-leeze stop dying and relapsing, I'd appreciate it.  Just kidding, young ones, there's a whole host of you who've graduated from "The List of Four" and are now in college, back in fourth grade, on the swim team, and just generally kicking cancer's booty.

Miss Hannah, looking like she might wanna chew glass... but lovely and colorful, as usual! 

I want to talk to my Dear Readers about Miss Hannah -- yes, my hero.  If you've been following my logical and well laid out presentation of her story, you know that she recently suffered a relapse of osteosarcoma, with spread to her lung.  The good news is that a (relatively) simple surgery may have caught it early in the form of a nodule with clean edges.  So, that's worth a "yay!" -- just don't scare your co-workers with too loud a scream of joy.

The down side of chemo for osteosarcoma is the "side effect" of leukemia, which Hannah now has, as well.  That's worth a scream of another sort, and you probably should wait until you've some privacy before letting loose.

But you know me!  I'm not one to wallow in self-pity, oh no!  And in this case, since I am not the one battling two cancers at once, why should I?  Sorry, I got confused there for a moment, or a decade...

So here is the deal. Be a bone marrow donor, because that's what Hannah is now working toward.  It's an arduous process, and she is, of course, taking things zen-like, as they come.  But her transplant coordinators and family can't afford the luxury of laying around doing chemotherapy, relaxing in that comfy hospital bed, and chowing down on jello.

This is the latest post from Hannah's mom, shared at her CaringBridge site:

Today starts week 2 of this 4-6 week stay. She has 3 more days of chemo (including today) and then we wait for her counts to come back up before they let us go home for a few days. 
Today I spoke with the head nurse for Dr other kids were tested to see if they are a match for donating bone marrow to Hannah. We got results...NONE of my other kids are a match for Hannah. The nurse said "they didn't even come CLOSE to being a match". *sigh* Soooo...plan B. They've already started the registry search. Because so many of you have offered to be a bone marrow donor for Hannah, we are in the process of putting together a donor drive. I will let you know when I have details. 
Thank you for keeping us uplifted in thoughts and prayers. 

From the National Marrow Donor Program, here are some frequently asked questions, with answers!  

Matching a patient

Deciding to donate

Donating bone marrow

Donating PBSC

Learning about the patient

Sunday, February 17, 2013

Good-bye, Sweet Freckle-Faced Daisy Love...

  uploaded to YouTube by ForTheMerricks·February 16, 2013

Britt and Kate Merrick did the best of jobs in trying to prepare all who had fallen in love with
their family, all who admire their lust for life, and their willingness to go to the ends of the earth, both in desperation and in hope.  We loved the wise parents, all the more so when wisdom failed them and they put one foot in front of the other, out of necessity and faith, combined.  We loved Isaiah for hanging on to Daisy on top of camels, in the oceans and seas, and for his watchful eye and gracious heart.

And we loved Daisy, standing in perfect first position at the end of her hospital bed, shoulders back, chin up, left arm on the barre of the bed's footboard, right hand gracefully extended -- with a foley catheter bag looped over the wrist -- a perfect Degas dancer's face imprinted on her own impish one.  We loved her surfing, clinging wet and happy to her father, and hovering around the tan legs of her mom, who took more pictures and videos than she was in.  Kate and Britt took their family on that final, desperate trip to Israel, Britt gave his cells for cancer vaccines, they tried new things, and in their trying made cures for others so much more probable in the future -- immunological advances, ways to shore up the body to fight.  Daisy, Isaiah, Kate, and Britt went where Jesus walked.  Daisy, like every tourist, I imagine, tried to walk on water.

I don't know these people.

Britt is the founder of a church movement, a pastor, born into one of the greatest surfing dynasties in the world.  He still calls himself a surf board shaper. Kate is private, but what has gravitated to her is of such wonder that you know she is wonderful, herself.  Isaiah is a young man, and inasmuch as I have been trained to read pictures as well as words (ut pictura poesis), I know he is a young man of gravitas -- with as much capacity for silliness as the next kid.

I did not know Daisy.

But anyone could see the emergence of her freckles over time, not just with the Israeli and Californian suns, but with the power of the pallor that cancer brought beneath them. She was funny, bright, lucky, blessed, but I think she pitied us all, somehow, too.  Or tired of us, is more like it.  She was practically a Foundation before she'd even died, the organization upholding her family was that organized.  (I was heartened at how the Merricks and their family and friends, though, closed ranks in these final months, at how they cherished and controlled their precious privacy.  I was glad and relieved to be a proper outsider.)

Even not knowing her, even with the warnings I gave myself -- that Daisy just happened to be one of the four children with cancer that I follow and support at any given time;  that Daisy was just my happenstance -- I fell in love with her.  I will always love her.

Thank you, Kate and Britt, for sharing the journey, for the funny pictures, and the wrenching ones. Thanks even for the sermons.  Thanks for knowing science and medicine as gifts and arts from God.  Thanks for giving Daisy the freedom to have her moments of doubt.

This is what they wrote yesterday:

At 2:40am this morning our sweet Daisy went to be with Jesus. She was sleeping and in no pain.
Christ is with us as the God of all comfort. We are thankful.
Jesus said to her, “I am the resurrection and the life; he who believes in Me will live even if he dies, and everyone who lives and believes in Me will never die. Do you believe this?” (John 11:25-26)
Daisy believed this and so do we. More than ever.
The Merricks
(At this time funeral plans are still forthcoming. Please check back this week for more info and details.)