Name That Disease

So last week I threw out a "Name that Disease" challenge (see below post). My blood disorder doesn't have a proper name and my complaint was that I'll never get that coveted Lifetime channel "movie disease of the week" without an attractive moniker. Making lemonade outta lemons is what I'm doing here.

But first, we need to name this rogue protein in my blood that is chomping away at my nerve sheaths and leaving damage in its wake. It's resulted in neuropathy in my feet and is slowly working its way up my legs.  Not much that can be done about it, other than try to slow its spread with chemo.  The "blood thingie" (my working title) is not curable and not terminal, but just, as my doctor shrugged, "A major bummer."

So I said what the heck...let's give this "major bummer" a name.

To date, I haven't seen any viable names for the condition itself, but did receive several attractive titles for my potential Lifetime movie.  You did well, Grasshoppers. Here are my favorites so far, categorized by genre.

Sweeping epic: "LORD OF THE VEINS" starring Cate Blanchett and Mark Ruffalo

Comedy: "NUMB & NUMBER" with Tina Fey and Amy Poehler

Romance:"BLOOD STORY" featuring Connie Britton and Hugh Grant 

Spy/Thriller:  "SYNDROME X" with Kate Winslett and Daniel Craig

Nice job, folks. Keep 'em coming. Because I figure, as long as I'm stuck with this "major bummer," I might as well have a little fun with it, right?

Beats the alternative.

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. 

Kindness of People

I've had a lousy couple of weeks lately, stressing about this and that. Just life, you know. The usual.

But that's why two separate gestures from women I hardly know touched me so. They couldn't have guessed how I was feeling, or how such simple actions would help lift my spirits.

The first occured last Sunday at the Golden State Greyhound Adoption (GSGA) annual picnic. Earlier this year, when my sweet pup, Elvis lost his battle with cancer, I heard from hundreds of readers who follow this blog, as well as my Pet Tales column in the San Francisco Chronicle. I also heard from many greyhound guardians who belong to GSGA.

One such person was a woman named Catherine, who had emailed me, saying: "Providing updates on Elvis over the years has no doubt led to many Greyhound adoptions and presented a loving snapshot of what these wonderful animals contribute once they are released from race track slavery. Your grief is felt....."

At Sunday's picnic, I met Catherine who was as nice in person as her email implied. After talking a bit, she said she had a gift for me "...to celebrate Olivia's homecoming," she explained, handing me a stylishly simple ribbon bracelet with one single bead. "Think of your new dog every time you wear this bracelet."

Tongue-tied, I stammered an awkward "thank you," not really conveying how moved I was by the thoughtful gesture. But I wore the bracelet a couple times this week, and each time I glanced at it, I'd remember my goofy, loving, delirously joyful dog waiting for me at home and I'd smile. The bracelet, Olivia's token, achieved exactly what Catherine meant for it to do.

The second gesture came at Wednesday's book club meeting. There we were, sitting in a cozy circle in Anne's living room, chatting about movies, men, work, and, oh yes, the occasional book, when Susan said she had something for me. Now bear in mind, I've only socialized with Susan in our book club. She's always been warm and friendly, but I've never had the opportunity to get to know her better. 

Anyway, she reached into her purse and pulled out a small ceramic Greyhound statue. It had belonged to her daughter, she explained, who has always wanted a Greyhound. She left the statue behind when she moved out and Susan knew if there was anyone who would appreciate this item, it would be me.

The statue looks just like my sweet Elvis.

And so, now gracing my fireplace mantle is the Elvis statue circled with the Olivia token. Every time the two catch my eye, my heart is warmed: with love for my dogs past and present, as well as gratitude for the kindness of people who understand that love.

My Canine Twin

Talk about throwing pride to the wind. That's what I did today, at the Golden State Greyhound Adoption annual picnic, when I entered a contest with my pup, Olivia. The name of this contest?

"People Who Look Like Their Dog."

But I had to enter. How could I not when the first, second and third place winners were promised a prize of the highest order? The desirable, invaluable, and highly esteemed... drum roll please...Squeaky Toy.

We nailed second place.

And so, here is the evidence (albeit fuzzy, thanks to the lousy camera on my iPhone 3). What's important is that my girl got her coveted squeaky toy, and heck, I figure there are worse things to resemble than her sweet face. Anyway, I prefer to think that Olivia's big ears and long nose have nothing to do with our striking mirror image, and more to do with the fact that we're both tall and skinny, right?

Right?

The Very Nerve

I work with a woman who has the most beautiful complexion I've ever seen. It looks like pure porcelain, not a mark, wrinkle, or blemish to be found. It looks air-brushed, her skin is that stunning.

As Tina Fey would say, "I want to go to there."

And so, even though I don't know this co-worker very well, I asked for her beauty secrets because hey, desperate times call for desperate measures, and my skin could use a little tune-up. And, as women are wont to do when paid a compliment, she was sweet and flattered, and happy to share her skin care products.

Except I learned that we used the exact same line! Could it possibly be (gasp) ME? Ah, but then she revealed one additional product she uses, a tinted sunscreen, which I deduced must be the secret ingredient: all I had to do was add this particular item to my skin care and voila! Buh-bye Howdy Doody, hello Hot Mama, right? Right?

And so, I went to Amazon to place my order, but first perused the reviews, which were awesome, of course, every one of 'em. "Best product ever" and "light and silky on your face!" I was right: this WAS the missing link. I was ready to click "send" when one review caught my eye. The headline said, "Great, except for the alumina."

Uh, what's alumina?

It's a chemical, I read, "...a suspected neurotoxin that is classified as toxic or harmful.. something to be wary of, especially if" --these words jumped from the screen --"you are predisposed for any degenerative or neurological diseases."

Now, it's no secret that four years ago, I had jaw surgery that resulted in permanent nerve damage to my face and inside my mouth. Then, last year, the fun continued when I was diagnosed with a rare blood disorder in which a protein in my blood is "eating" my nerve sheaths. This condition, which first attacks the longest nerves in the body, has already numbed both feet and is slowly working its way up my legs.

I've got, in the most literal sense, a bad case of nerves.

That's why this review caught my eye. It led me to do a little research, which validated that it's probably not a bad idea to avoid alumina. Don't want to aggravate the little buggers more than they already are, know what I mean?

But then I wondered, was alumina in MY sunscreen? I grabbed my tube of Neutrogena, the stuff I religiously slather on my already-numb face to prevent melanoma. The stuff I've used for years. And, as the theme song from "Psycho" played in my head, there it was, the number one ingredient: alumina. 

Alrighty then.

So I'm tempted to order the toxic stuff because heck, the harm has already been done. It's like my lame jaw surgeon said when he tried consoling me about the nerve damage done to my face:

"Hey, you may be numb, but at least you look good."   

Call Me Ishmael the Plumber

I've been blessed with thick hair. Curly hair. Lots of hair. And it's nice on my head, but not so much in my drain.

Which is where it always seems to land, in spite of my best efforts to blow-dry my hair away from the counter. My silky strands somehow manage to float through the air and, with the focus of a heat-seeking missile, gravitate toward the sink to effectively clog the pipes.
Last night, when neither basin would drain, I spent an exciting Saturday evening fishing with my handy-dandy Cobra 400 Zip-It stick. The spiky little teeth usually work like a charm, although it's an effort not to gag at the sight of the hairy pond scum that comes up. But last night, nothing.
So I placed a 9-1-1 call to Captain Ahab. This is what I call Sarge, a retired plumber who lives down the street and tolerates my frequent calls with a fatherly patience. He usually shows up, tinkers 5, 10 minutes and voila, whale killed, problem solved. Half the time he doesn't even charge me since the problems are so minuscule.
"I'll get ya next time," he usually warns me with a grin.
And reliable as always, Sarge showed up promptly at 9am this morning, armed with a mean-looking, mega-long Zip-it stick and looking pretty confident. Only this time, like Captain Ahab, Sarge appeared to have met his match.
"Clog's too deep," he said after 30 minutes of fruitless fishing. "Gonna need something stronger." A bigger boat, per chance? And he left.
He returned half-an-hour later with some nasty-looking liquid. When I inquired about the brown stuff sloshing in the clear container, he replied with a cryptic, "You don't wanna know." And up the stairs he went.
For the next two hours I could hear Sarge tinkering around while I finished reading the Sunday paper. He left the house briefly, only to return with more tools. I baked chocolate chip cookies and watched an episode of "I Love Lucy" while the clinking-clanking sounds continued echoing through the house. He left and returned again. I swept the floors, watered the garden. I tried to pretend that this was a pleasant Sunday morning in which my beloved fantasy husband (who looks like Hugh Grant because hey, this is my fantasy) was upstairs puttering around with his newest toy, and not a plumber who typically charges $90/hr.
Finally, Sarge clumped down the stairs, ready to leave. Not that he was done, mind you.
"Gonna hafta come back to finish the job," he told me. "The stuff I'm using needs time to work. In the meantime," he warned, "stay away from the bathroom." When he saw the look of concern flash across my face, he was quick to reassure me that there weren't vapors or anything to worry about. Vapors? I hadn't thought of vapors. Good lord, what was in that container?
"Just stay away," he repeated. "Pretend those two sinks don't exist."
And so, tomorrow Captain Ahab returns in yet another attempt to harpoon Moby for good. Not to mention, I fear, my wallet.
After all, he's always joked, "I'll get ya next time." This time he may mean it.

Origin of "Pillow Fight"

How hard can it be to buy a pillow?

That's what I wondered during my chat with another customer at Bed, Bath & Beyond. We were both in the linen department, shuffling through shelves and shelves of pillows, when she told me this was her third return.
"The first one was too firm and gave me a neck-ache," she said. "And the second one was too soft and flat. Buying a pillow is so difficult!"
I nodded sympathetically, but really, I wondered if maybe she was just a tad high maintenance. With so many pillows and so many options, how could one possibly go wrong?

There were pillows for side-sleepers, stomach-sleepers, back-sleepers, and sleepers who contort themselves into positions with no identifiable name. There were firm pillows, medium pillows, soft pillows and pillows for people with asthma or people who snore. There were down-feather pillows, foam pillows, memory foam pillows, synthetic pillows, latex pillows and for those with allergies, wool-cotton pillows.
All I had to do was pick the right pillow. Piece of cake, right?
When dozing off, I always start on my back, but eventually shift to my stomach, so I selected a firm, down-feather pillow. In the store, I gave it a test drive, hugging it to my chest, imagining it in my bed and cradling my head as I finish reading The Hunger Games trilogy. Ummm, felt nice. I could easily imagine myself dozing off to dreamland with this baby. I whipped out the credit card and bought two.
And the next day woke up with a throbbing headache and stiff neck.
Back to the store I bolted with the pillow-bricks in tow. Obviously, a firm pillow was not for me. Obviously, I didn't sleep on my back as long as I thought I did. Obviously, I needed a pillow more suited for stomach-sleepers. Logic abounding, I selected the softer, more gentle pillow for stomach-sleepers. Obviously.
And awoke the next morning with my face embedded in my mattress.
So, I'm heading back to Bed, Bath & Beyond for yet another exchange and a third purchase. Following the footsteps of the "high-maintenance" gal I talked to just a few days earlier. Now, I know what she meant when she pondered the difficulty of buying a pillow. I feel her pain.
Literally.