Man. I need new glasses.

That goes on The Shortest List, along with fixing the eye-watering gas oven fritz. Rest in peace, you sad pair of gimped up glasses. Now you just match the rest on the pile.

You've been stepped on, kicked, dropped, but finally you snapped under the pressure of me, I guess. Not to make you feel any worse, but now you've made me feel fat and clumsy on top of it all. It all started so innocently. I guess I should've never done those crosswords right before bedtime. That I did not see coming. That and drawing indiscriminately all over my arms and sheets with a pen that night, too.

"Oh, Ambien, I can't stay mad at you."

Now all I have left is the granny-specs missing those cushiony nose things that you take for granted until they are gone. Then it makes you wonder how people lived without plastic. How people used to only have things made from wood, like sets of wooden teeth. Like how I should really be working in a factory right now, like on a production line, with a conveyor belt, maybe working at a candy factory or something like that. I wonder if they have a vision plan that would cover the cost of new glasses...

I can't see crap without squinting like I live on the surface of Mercury now, but you can't win them all. But if nothing else, I can roll away from this knowing that at least I have the confidence to do crossword puzzles with pens and not pencils.

I'm getting good at this.

Not the "posting regularly" part, but the "making platelets" gig.

Why do I have to explain my jokes? I blame Cyclosporine -- not only for the gorilla arms and the cookie-duster but also for the flatness. Or redundancy. Or over-explanation? Or total awareness of my over-explanation and the inability to edit myself any better than I ever did...?

See? Who Cares and What's New...

Anyway, the best excuse yet for not posting more: there's not much but consistency to report.

Good!

I just go in for check-ups every three weeks for now. Between doctor's visits, I've been making and stock-piling even more beaded, sculpted things to sell online eventually, already selling books for divinely-donated-platelets money. Or even better, for fun.


Except for the daily, earth-shattering fact taken for granted that I am making all of my own Trinity (white blood cells, red blood cells, and most important platelets), there's nothing more serious to report except the persistent anemia.

Well, that, and my eye-watering gas oven won't light up for some reason, and the drains in the bathroom have gotten just clogged enough to be really irritating. But other than that, there's nothing but literal and figurative blue skies.

Today's doctor's appointment still showed that I have a lower red blood cell count than normal which is okay as long as I am still making platelets. Which by the grace of God and Cyclosporine, I am. My platelet counts are steady and growing slowly (which is good) at 186k.

My long-term goal is to get back to 315k, but that's just to show off.

For now, my new experimentations will be turning toward increasing the absorption of my iron. So if you know anything about that subject, I'd love to hear what you've got. Currently I take 325mg three times a day and added Calcium Citrate. Apparently, taking calcium supplements along with iron supposedly helps you absorb more iron. I've also read that white wine increases the absorption of iron. Good enough for me!

Also, my B12 levels were low. Bumping that level up just might help to sped away this on-going anemia. Even though I've never had the pleasure of taking a Hawaiian vacation, my mom says that's what a shot of B12 feel like. And just one shot into it, I do feel better but just a little ripped off without the sandy, warm beaches of Maui.

Next appointment is Tuesday, July 3rd.

Until then, I will update more, but hopefully it won't be anything more than, "Crud. I just broke my last pair of decent glasses." Which I did the other week already.

Still haven't gotten that follow-up bone-marrow aspiration corkscrewed out of my buttbone yet, but I'm not going to think about that until it happens. I'm off to buy those sparklers and firecrackers for the Fourth. It's going to be a good one.

"Poof," and she disappeared into a wisp of smoke...

And I mean "poof" in the magical way, and no other.

How've I been? No, no. Really, the question is: How've you been instead? I seriously want to know. For one thing, I care. (Thank you for reading all my bappity-bap.) And another thing, I'm tired of thinking about all my stuff, all the time. Not complaining, just squinting up at the sun, drying out on the beach I've washed up on, shaking the wet sand from my unmentionables. Or is it unspeakables?

Aplastic anemia or any other illness is not for the faint of heart, is it?

The only catchy line from "Steel Magnolias" besides "My signature colors are 'Blush' and 'Bashful'," is "That which does not kill you makes you stronger." I think I can say, with room for growth, I could bench-press a lead-covered gorilla right now. More likely, I could levitate him using only my brain.

Last doctor's visit, I had 180k platelets. In other words, "yippee!" Blushing, I made them myself. Whew. So that was about 6 weeks ago. Then 3 weeks later , I held my own and still had 181k. My mom nodded with the doctor, agreeing that 181 was a good number, seems the platelet-production is beginning to plateau. I need more red blood cells though, but I think I can manage that. So as far as I'm concerned, my platelets are working again, my white cells are good, too, so that's good enough for me.

Thank you, God, thank you, Dr. Files, thank you, PICC Line, thank you, University Medical Center Cancer Clinics, thank you, blood donors, thank you, good friends who've had to listen to my ills and complaints, and to those really good friends who suggest prescription medication changes, and thank you, "better living through chemistry" and research. What do I say? "Kiss a scientist today."

Oh yes, and big thanks to my Mom, for simultaneously saving my life and not killing me.

This roadtrip, sponsored by Evian water.

Scary. I look up and a month is gone, amusing and amazing myself for days at a time. But I get stuff done. No, really. Working on that 10 Year Old Personal To Do List. Actually, for all the outdoor-time, I do have a really good t-shirt/arm tan to show it. At least on one arm from driving back and forth to Memphis and Jackson in the past weeks, have been without a good internet connection in there, and all those good intentions.

I've spent a lot of time trying to get back to normal which isn't as easy as it looks, ever, is it? But I can tell ya but, I have been running while I have my motivation back. Plus, I figured I needed to get out of my poor mother's hair, even though I do like having pillow fights with her. And I do like threatening to break her arm in three places if she doesn't stop it. She laughs at me for suggesting it, but has this look in her eyes as if I just issued her a physical challenge.

Let's see, what day is it...June 6th? I go back to the doctor on June 12th. The only thing they found that was beginning to go abnormal was my kidney function. This is just a side effect of cyclosporine, hopefully. But just to be sure, my morning dosage was reduced (goodbye, bearded lady career dreams!), and I was ordered to drink an ocean-full of plain water. Have I mentioned I hate plain water? But, I am sure I'd hate dialysis even more, so cheers!

Water is good with lime. Squint at it, and it almost looks fashionable.


Well, I have crossed a lot of major stuff off The (Never-Ending) List:

- spray for ants (not easy, people, they are crafty)
- wax the car (hey, it had to happen)
- excavate/box-up good clothes for donation
- drink water
- declutter, then declutter even more
- call for storage unit prices
- procrastinate in calling for storage unit prices
- sell books and other delightful media
- make stuff
- finish something I put off for, oh, ever
- drink more water
- get the yard spiffed up and weed-free (still working on that)
- declutter even more
- drink more water
- take many baths (but don't drink the water)
- clean and wax (yes, wax) the faux-marble bathroom sinks, tubs and shower
- despite the cottonwood blooming for the fifth time this season, walk
- get together portfolio for freelance projects
- learn GoLive
- finish web site
- do scribbles and scributes
- update blogs
- watched Johnny Depp in "Pirates" movie*
- drink more water
- bathroom break...

It just goes on and on like this, every day, every week. Again, who's complaining? Not me. Because I realized that I don't feel like getting back to the normal I had before I got sick. That was not my kind of normal. Working on my own dreams and visions of those I respect and work with is harder to come by and harder to get cranked up, but more worth it and more normal to me. So, wish me luck and platelets. I wish you the same, which is, in fact a very good sentiment to wish someone.

Next doctor's appointment: June 12th
I predict the platelets will be hovering around 180k still.
Might get a bone marrow corkscrewed out of my buttbone. In a way, I hope so, to get it over with!
Will see if my iron-enriched food selections have paid-off some of my anemia debts.

Been feeling winded, heart-poundy, headachey, flakey-like-a-pastry, but that could just be those dang cottonwood allergies...

I know, I know...I really should move from Memphis. Ok. Anyone want to buy a really cute cottage-style house complete with roses and gardenias, just down from the River's edge? More details to come, if so.

Also, anyone know of a place where I live/write/sculpt/make beady things where the weather never gets anywhere near 90 degrees F, plus there is no cottonwood? Next to water would be nice, but please email me with ideas!



*me: "I saw the new Johnny Depp movie last night."
mom: "Did ya like it?"
me: "Like it? Who cares? I could watch him draw in the dirt with a stick for three hours."
mom: "I could watch him read the phone book for two."

wthybtt?

That stands for "where the hell ya been this time?" meaning "I disappeared again, didn't I?" Well, I blame the weather and this allergy I've developed to the computer. That's me though ~ distracted by shiny objects, sushi, and walking in the park, counting caterpillars for longer than I meant. This has always been the story of my life, all except for the ITP twist, but luckily I like most of the story, really.

That's where I have been with a grand total of 177k platelets since the last time I went to the doctor, last Tuesday. Like I have said before and will say it again squared, "Thank you, Big Daddy G, hiding up in the clouds, and thank you for all the angels you put here on the earth to put up with me and help me through all of this, every day."

What else have I've been doing since last update? Hmm...

~ went to Memphis to check up on the hermit crabs (don't ask)
~ made many things with beads on them
~ had a birthday and some cake
~ watched several hundred different cooking shows
~ realized Ina Garten is a person and not a place
~ watched an acceptable amount of "Fraiser", and an unacceptable amount of "Will & Grace" and "The Golden Girls"
~ got my funny valentine, the PICC Line, taken out which was a very, very sad day until I realized I could take a shower for the first time since December 28, 2006
~ took a very, very long shower
~ thought of approximately 63 good business ideas and shot all but 4 down
~ cut my hair twice, but not in that crazy Bette Davis "Baby Jane" way, but more of just a nice trim to even out the ends which had begun to look moth-eaten, I thought
~ tricked out my mother's computer until I created one fine conflict with three innocent firewalls
~ got a 2-unit blood transfusion that didn't agree with me, but I absolutely appreciated it anyway
~ thought I liked Rachel Ray
~ learned how to whack weeds, becoming a full-fledged "whackerologist" (named so by my mom -- Yes, I know it sounds like a urologist, so just let me dream I'm a doctor, okay?)
~ helped cart home thirteen tons of plants, equipment, cow manure, tomato plants, and other good things for The Yarden
~ helped cart home thirteen more tons of plants, equipment, cow manure, tomato plants, and other good things for The Yarden
~ made guacamole
~ wondered if I'd look weird driving the Weinermobile
~ stared at the Eiffel Tower and wished to go back and stay there
~ took a monkey bath with a book for old times' sake
~ contemplated my eyebrows
~ lost part of my mind after I came to and realized what all has happened in the past 93 days
~ gained perspective With a Little Help from My Friends and felt bad about the hermit crab that died instead
~ got over the crab almost as quickly as I got past Rachel Ray
~ saw something sparkly and painted my nails, both hands Bashful Blush and all 10 toes Tijuana Red
~ made my mother insane, but she totally asked for it because she bothers me every time I go into the bathroom
~ apologized for making my mother insane (even though she bothers me every time I go into the bathroom)
~ went to the farmer's market for okra
~ thought about the word "pumpkin" until it made no sense at all
~ did 99 other things instead of the 3 things that really needed doing
~ took many walks, counted more caterpillars, and waited for the butterflies soon to come

Not exactly exciting but I have to admit, even with the ITP and aplastic anemia, it's much better than anything I was doing exactly this day, exactly last year.

And I'd like to especially thank every one of you for being the sweetest people in the world for keeping up with me through all this and always sending me hugs and your cheer. There's not enough I could say or do for you, but remember to call me when you need a couch moved or need your weeds whacked.

The next time I go to the doctor is next Tuesday where they will take my blood (and I will miss my PICC Line so much that day) and do one final bone marrow to confirm that yes, ATGam, transfusions, cyclosporine and good thoughts and prayers do work.

So how is the beard coming? Fine, thanks. Under control. Am enjoying the eyelashes and nails as the trade-off, so I really am that easy-to-please. And the second-chance at life is an extremely nice benefit, too.

Officially, the physical healing is slow, but it's sure, and that's good. The emotional healing is more than interesting to see everyday and is soon to follow like the little lamb. And now it's time for me to get busy with work* again, and I can't wait.

*See, I told you I lost my mind, didn't I? But this time, it will be opposite and purposeful, new and improved, with lots of love on it, and lots of knowledge on many topics I had no idea I'd ever explore. Actually, that reminds me a lot of how my life was 8 years ago, and that is a very good sign.

xoxo - bny


short-term goal of 100k accomplished 03/13/07
with the help of a few hundred people and God.

almost there to mid-term goal of 200k,
so by 04/24/07, I should be there.
the bone marrow will be a piece of cake
because this time, I know to take
*some blue bippies* before I get it

new short-term goal: admit that, yes, I did use my dad's nose hair trimmer. there. I feel better for having said it, okay? it was for everyone's benefit, not mine.

long-term goal: 315k

I need to stop under-estimating things.

"So how do you feel, " the doctor asked. "Oh, I don't know, I feel good, really good, so you tell me," I smiled and shrugged back. I'm really get the hang of this aplastic anemia thing whether I like it or not.

So good news, with yesterday's predictions, I forgot to throw in, "I'm feeling a fit 126k" because in all actuality and despite the missing steroids, I came up at 113k platelets ~ 13k past my short-term goal. Literally winded, but I can figuratively breathe now.

I'd like to thank The Academy, those four extremely expensive bags of invaluable horse serum along with handfuls of pills, all the divinely donated units of blood and platelets from the selfless unsung heroes, Big Daddy G in the Sky and all his angels (you) here on Earth, and leafy green salads with plenty of avocados, and here's a high-five for okra.

Yep, without the steroids, I'm a little winded and slow ~ but that's just the anemia talkin.' I'll get over that and gain some form of energy soon enough ~ hopefully it'll be some type of super-power where I can churn out more beaded things for sale or maybe glow-in-the-dark or something cool like that.

I need a few thousand more white blood cells and red especially. My white cells are hopefully temporarily low because of the immuno-suppressing cyclosporine I take twice daily. And I knew my red cell counts were on the low-side because I can hear my heartbeat in my ears, but that is almost a comforting whooshing sound at times. Well, of all the side effects and symptoms, it is! The doctor decided not to tranfuse me with any units of blood unless my red blood counts fell lower or anything changed in the next two weeks.

So I'll watch that, and get another blood count early next week so I can go to Memphis and do some business. That's the plan anyway, although I have gotten Really Good at "Plans A" going out the window. But that's what "Plans B and C" are for, and that is The Truth.

I brought back my cat, Googie, and he's loving the extra attention and tuna here provided by my mom. My mother's cat is getting used to him even though she wants to rip him open like a drunk frat boy with a bag of chili-cheese corn chips.


Summation:
Two weeks ago, the butt-bone was victorious
with baby platelets @ 69k.
Yesterday, all my troubles seemed so far away
with an army of platelets @ 113k ~
13k over short-term goal of 100k.

At this rate, I'd say by next doctor's visit,
I should fall in the low-normal range of 140k.
But I'm thinking it'll be more likely
halfway to my long-term goal of 315k,
which my math-cheater mom would calculate
is about 157k.

Then I can get back to normal life as I know it, right?
Everyone, either hold on or stand back.

Next time, I hope I don't need it,
but I will gladly accept a unit or two of red blood
for good luck and hopefully farewell,
because it makes me feel like I just had a Mars Bar.

The doctor didn't order the PICC Line out.
Good, please don't anyone tell him any differently
in case he kindly forgot for my benefit.




short-term goal of 100k accomplished 03/13/07
with the help of a few hundred people and God.

new short-term goal: bleach the Neandertal hair growth
like it'll fool anyone, but hey

long-term goal: 315k

Where the fork have I been?

"Off to do 1.5 million errands," I said. I meant 2.3 million instead, and I'm still not done.


Your week begins with a rush, but quickly falls into a manageable pace that allows you to methodically plow through your chores. You turn toward the more serious side of life as you reevaluate what you need to do in order to keep the most important things on track. You've had your fun; now it's time to get back to work. Monday, March 12, 2007

Loosely translated, the fun part must be subjective.

Making platelets is good, relieving and addictive, but I wouldn't call it fun -- the knitting of scarves made things manageable while I've been coming off steroids for the past fews days. Maybe that counts as fun. But am I complaining? Nope. I can't have fun until I can get back to work. Good Lord, you take that back ~ I am not high! I don't touch that stuff. I just like to work is all. And, to tidy things up.

There, I said it and feel better for saying it.

Maybe being a Merry Maid is in my near future....hmmmm...

Also, I've just been scribbling down notes of interest and research to myself every day so I will remember not to forget, when I can, between the fun. Again I say "Steroids are the Beast Goddess Who Taketh with One Hand and Crusheth Thy Nuts With the Other." My figurative ones ~ not literal ones. The moustache and beard are throwing you, aren't they? Well I can assure you, it's about the most masculine thing about me besides proud, fightin' Irish attitude. Which mainly explains the tendencies toward scotch, too.

What? You got a problem with that?? Hey, my great-great-grandfather was directly from Ireland, I can say that. Why, if I weren't so tired and in need of a good waxing, you'd be in real trouble, buddy. Don't put down My People. Ooo, now you've gone and made me miss my cross-dressing friend ~ he always inspired me to keep my nails looking as luxurious as I could, which was completely motivating at the same time, and I could almost keep up with his hair but never his shopping for shoes...

My my. It's the 'Roids Leftovers gigressing again. Ignore me. I spend loads of time ignoring myself, too. I have tips on How To if you need the brochure.

Off to the doctor tomorrow for another platelet count, two-week checkup. I'm still playing the numbers guessing game ~ not because I have to, but also because a bag of jellybeans is involved.


For those playing the platelet-growing pool,

Last stats:
Two weeks ago, the butt-bone was victorious
with baby platelets @ 69k,
over halfway to short-term goal of 100k
I predict 99k, not because it would be
the normal, slow-growth average
but because it's a pretty number.

I may need a unit or two of blood for good luck and farewell, but we'll see.

I predict the doctor will order the PICC Line out soon. Not much of a prediction as he told me as much last time. PICC Lines only last for about 3 months due to risk of infection and thrombosis, and I got mine December 29th. Bittersweet because you could serve tea off mine it's so immaculate. I'll hate to see my Valentine go, but I must move on with my life ~ even if it means I will have to endure more pricks along the way without him. Needlepricks for blood counts...what did you think I meant? Sheesh!

Aw, who's kidding who...I love the way you think.


short-term goal: 100k
long-term goal: 315k
And, to get rid of the Australipithicus forehead hair, sideburns, and goatee...the nails, I'll keep.

And the winner is, the butt bone, with 69k!

As we used to say in fourth grade,"Boogie." I'm up from 46k to 69k...

Doctor said, "Slow growth, that's what we want."

"I feel like I have 126k," I told my mom. She said, "No, you don't want to get them too fast, then you'd have a different blood disorder." Good point.

Off to do 1.5 million errands, no time to be anemic! Be back this afternoon to answer mail and get to more paperwork. No, really!

past halfway to short-term goal: 100k
long-term goal: 315k