Tuesday, October 23, 2012

Return of the Blood Thingie Part ll

On Friday, I met with my neurologist to discuss this blood thingie I've got, a condition so rare that it doesn't even have a proper name. Nothing interesting like Such-and-Such Syndrome or respectful like John Doe Disease. Instead, its name is an ambiguous string of letters that sound more like something pulled off the Periodic Table. 

Hence my working name of choice, the "Blood Thingie."  

Last year, I had chemo to try and halt the progression of the Blood Thingie, and in July test results indicated that the treatment had worked. The Blood Thingie may not be curable, but at least now it wasn't spreading. Cool.

Lately however, symptoms are returning. I've lost at least 75% of all feeling in my feet, and the "pins and needles" tingling (indicating nerve damage) has suddenly resumed, creeping up my legs to almost mid-thigh. Not good, my friends, not good.

That's why I met with Dr. Gibbs, to find out what the heck is going on.  I like this guy.  How can you not like someone who, upon hearing the familiar Words with Friends "ding" from the iPhone tucked in my purse, confesses that he's also addicted to the game, and then shares his frustration at constantly losing to a lawyer that he's playing. A lawyer, for Pete's sake! His response was the same I might have if I were being bested by Koko the gorilla.

Anyway, Dr. Gibbs ran the usual tests, which include poking my feet and legs with safety pins, zapping them with electrodes, and testing my balance by having me stand and then pushing me around. "And to think I get paid for this," he joked. 

Additional blood work will confirm if the Blood Thingie has resumed, but his medieval tests indicate that it has. If so, he said another round of chemo may be in order. Ugh.  At least it's not the losing-hair-throwing-up-kind of chemo, but still, this stuff is pretty toxic. During my last round I was told that following each infusion, I should flush my toilet three times after each use for three days because of what the chemo might do to the pipes. My response had been, "Pipes? Pipes? What about MY pipes!"

And so, while we await results, I'm welcoming suggestions for a name for this disease. Something that sounds mysterious, intelligent, and maybe even a tad sexy, because here's what I'm thinking: with the right sounding name, perhaps I can turn lemons into lemonade and get a Lifetime channel disease movie-of-the-week out of this whole ordeal. Can't you just picture someone like, oh say, Connie Britton or Laura Linney playing me in the title role? I like the idea.

But that's not going to happen, not with a name like the Blood Thingie. So bring it on, folks--share your ideas for a decent-sounding disease. Something I can wear with pride. My self-respect is at stake here.

Not to mention maybe an Emmy. 

2 comments:

Dip-Dip and the Bridge said...

How about Syndrome X - that sounds pretty cool, like a spy film or somthing :)You could be the beautiful heroine.
I really hope the chemo gets it under control again so you are symptom free.
My hubby suffers from Multiple Myeloma which is bone marrow cancer and pretty rare, especially in younger men - I said, "you couldn't have won the bloody lottery could you, it had to be a rare disease!" LOL.
I'm glad you have a good sense of humour because it really helps.
Take care, Lynne x

Richard Gylgayton said...

Greyt's Disease....natch

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