chez_cranky: Somewhat grainy pic of happy/nervous red & white corgi, ears up, tongue out, STARING RIGHT AT YOU! (Default)
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Oy.  Where to start?

In June, I attended the AA & MDSIF patient conference in Cleveland.  Almost everything I know about myelodysplastic syndrome (MDS) is at least fifteen years out-of-date, so the panels were mighty informative (O Hai thar, neuropsychological effects of MDS!).  Being comparatively young for an MDS patient, I felt a bit conspicuous and ill-at-ease.  I expected to be one of the long-term survivors; I did NOT expect to be THE long-term survivor.  

A little background:  I was diagnosed with myelodysplastic syndrome in 1984, one month shy of my 16th birthday.   I'd been symptomatic for the 4 years previous.  I'm now 43.  Simple math:  I've had bone marrow failure/MDS/a super rare freaky form of cancer since I was at least 12.  The average age of MDS patients at diagnosis?  71.  In approximately 30 % of patients, their MDS "transforms" to AML (Acute Myeloid Leukemia).  I won't go into the life expectancy data for the various forms of MDS, except to say that 10 years post-diagnosis is considered a long time (Tell that to a teenager...).  There are various treatments to alleviate symptoms and/or suppress the growth of abnormal cells, but the only "cure" is a bone marrow transplant.  I say "cure" in quotation marks, because according to my 15 years out-of-date information (and a goodly amount of sheer terror), a BMT is a harsh, nigh-medieval procedure that damn near kills the patient to cure them.  (Mah storeys and mah paranoias, I iz sticking to them.)  I have only had supportive care (transfusions, and for a while, growth factor injections [Procrit, Aranesp]).  I have not been particularly proactive.  

...and I've just gone blithely about my life, thumbing my nose at the Grim Reaper, avoiding transfusion reactions, racking up a whole load of funky antigens, dodging the odd collection calls (for improperly billed claims), kvetching about the cost of meds I can't afford, fretting over what cuts the next great insurance changeover will bring, and y'know, trying not to let it all bug me too much.   

Oh, hey, that last paragraph there?  I was going for "Look at how easy I've had it!" and "Marvel at my cavalier attitude in the face of DOOOOM!"

lol!fail!


Y'know, it might just be that it gets to me...

So.  Yeah.  To sum up:  Conference.  Freaky rare cancer most of my life.  Survivor's guilt.  Depression.  But it gets better!  I had a Sprog 2.5 years ago (he's awesome, btw, and awesomely frustrating when his will is thwarted).  MDS isn't an inherited condition,* so my better half and I weren't too concerned.  The amnio results were fine, the blood I received during pregnancy was screened to a fare-thee-well, and my first and only transfusion reaction (after 300 + units of blood [since 1984]) was itchy-not-fatal hives.  Sure, there was the possibility that Sprog might inherit some unknown precondition, or vulnerability to unknown environmental influence-X that can cause bone marrow failure, but there are no tests for that.   So far as I'm aware, Sprog is plenty healthy.

My mom, on the other hand, is not.  Guess who was diagnosed with MDS this past June?  She had her BMB (bone marrow biopsy) the week preceding the patient conference I attended.   That asterix up there?  It stands for "MDS isn't genetic.  ...99.9%  of the time."  O HAI FAMILIAL MDS!!!  (And also?  Sonuvabitch!)

...

...

...

Reckon I've been a bit preoccupied of late.  It's not just that my mom's acquired a shiny new expiration date; everyone's got an expiration date.  It's not just that I'm discouraged with my doctor (who is also my mom's doctor); he is essentially retired, and mum and I do have low risk MDS... (But damn it, I'd really like to see my actual BMB results!  And what ARE my blasts**?!?  Don't tell me I have no blasts; everyone has freakin' blasts!!!)  It's not just that my mom seems to be putting off reading through all the MDS info I've given her... I totally get that:  Surprise!  You have a freaky form of cancer that practically no one has heard of!  It's not just that both the speaker and moderator of a webinar on the NIH's State-of-the-Science Symposium on MDS considered my 30 year history of MDS "a suspicious story."  (Yeah, okay, I'm a shiny unicorn, I GET it!  I am a woman who digs superhero comics; am used to being a mythical creature.  'Though I've gotta ask, "What's the freaking point of being a mutant if you don't have any superpowers?")  It's not just that I've squandered large chunks of my life waiting for the other shoe to drop.  It's not just that my antidepressant isn't working, my social anxiety is torpedoing my social life, and I'm ready to go to bed 5 minutes after I wake up.  It's not just that every fucking spell-checker rejects "MDS" and "myelodysplastic!" 

It's not just that I'm fucking worried sick that my gorgeous, awesomely frustrating, happy, mischievous imp of a Sprog has an increased chance of developing MDS.

It's all of it.



**blasts = immature white blood cells

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chez_cranky: Somewhat grainy pic of happy/nervous red & white corgi, ears up, tongue out, STARING RIGHT AT YOU! (Default)
chez_cranky

April 2012

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