Um, What ?

Apr. 12th, 2012 06:21 pm
chez_cranky: Somewhat grainy pic of happy/nervous red & white corgi, ears up, tongue out, STARING RIGHT AT YOU! (Default)
Sooooooooooooo.

Yeah.

Guess what?

I DON'T HAVE MDS.

I'VE PROBABLY NEVER HAD MDS.

(Cue flailing.)

WHAAAAAATT?!???!!!

It's like this:  Following all the "Holy Crap Familial MDS???" drama, I got a referral to Dr. S at the Cleveland Clinic.  I had bone marrow biopsy # 5. (BTW should you ever need a bone marrow biopsy, the Taussig Center at the Cleveland Clinic is AWESOME!  No IVs and THEY USE A DRILL -How COOL is that! Absolutely the BEST BMB I've ever had!)  The Clinic had my records for the 2 previous BMBs (all records prior to the mid '90's are unavailable).   

BMB's #3 and 4 didn't seem to indicate MDS. (Me: Really? Huh.)  I recalled my original doc, Dr. C, telling me in December that the pathologists who compiled my first BMB results didn't think they showed MDS either. Dr. C said "But what else could it be?" I showed up in the ER with a hemoglobin of 3.something.

I really, really wanted this BMB, with all the nifty new testing options that exist now, to tell me that my son was not in danger of inheriting my MDS.  Dr. S thought it was possible that I might have an inherited sideroblastic anemia (SA). Or the BMB might  confirm MDS.  OR we might "swing and miss" and get no new info.   A month later I returned to the Clinic for the results.

NOT MDS.

NOT Sideroblastic Anemia.

(okay...)

Then what DID I have?  What caused the severe anemia I had for at least ten years?

Answer: We may NEVER know.

My ferritin (iron) is very high; understandably so, I've received over 300 units of blood.  That might contribute to my anemia.  It does NOT, however, account for the severe anemia that hospitalized me in the first place (and required 4-6 units of blood every other month, for the next ten years).  Yes, I did inherit beta thalassemia minor from my father.  No, it is not known to cause severe anemia. 

On the one hand:  YAY! NO CANCER!

On the other hand:  Um.  NOW WHAT????

Since I don't have MDS, I'll now be seeing a "benign" hematologist at the Clinic.  Dr. M wants to get a CT Scan of my liver and spleen, and is looking into targeted mutation genetic testing re: my beta thalassemia trait.  We'll go from there.  This still leaves me with a metric shit-tonne of capital-I "Issues" to deal with...

For example:

Why the hell did my original doc call it MDS -for 27 years- if it WASN'T MDS?!?!?!?!  (Geez-louise, it's not like being diagnosed with a super rare form of cancer is at all upsetting.  #sarcasm)

What do I call whatever-it-is NOW?  No, I CAN'T just call it "anemia."  Calling it "anemia" invites people to tell me to "just take iron/vitamins," and to assume it's not remotely serious.  Why is that a problem?  For 4 years prior to winding up half-dead in the ER, people told me I was "just out of shape," or "lazy," or "making it up" whenever I tried to tell anyone that something was WRONG.  I don't think I will EVER get over that.

How do I just Get Over a 27 year-old, however erroneous, cancer diagnosis?  It may not have destroyed my life, but it certainly wreaked a lot of damage.  It was as much a part of my identity as having red hair, or being a geek.  And now that's just Gone.  "IDEK," I think, was coined for exactly this kind of situation.

What do I research now?  What support groups are there?  (Guarantee there won't be anything as awesomely useful as AAMDS.org!!!)  Everything I ever knew about MDS no longer pertains to me.  How do I know where to start looking for answers on my own when even my docs don't know what to call this???

Conundrums within conundrums.  My life.

Wheeee?

 


chez_cranky: Somewhat grainy pic of happy/nervous red & white corgi, ears up, tongue out, STARING RIGHT AT YOU! (Default)
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
chez_cranky: Somewhat grainy pic of happy/nervous red & white corgi, ears up, tongue out, STARING RIGHT AT YOU! (Default)
At Chez Cranky, "Let the Wookie Dance" is code for:

Dear Sprog,

* Let Mommy read her porn.
* Let Daddy go to the loo (unaccompanied, thank you!).
* Let the dog eat his dinner.
* Let Mommy/Daddy do anything potentially hazardous to a wee sprog's well-being (i.e. clean up broken glass, use the stove, move heavy things. etc.).
* Let Mommy update her blog for only the 4th time since you were born... sigh!

It's a perfect, catch-all phrase that translates as, "Darling Angel-Child of My Heart, although I acknowledge that the World does, in fact, revolve around you, there are Some Things that Do Not expressly require your presence and/or assistance."

Just freaking let the Wookie dance.

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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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