76, 50...I say I get 26k for optimism

Plus, I gotta brag on appearances -- my skin, nails, hair have never looked more balanced and luxurious, minus 10 pounds I've been meaning to lose all over anyway, despite steroids. Sparkly eyes with a bright shiny coat. Must be all that ATGam horse serum I got in the hospital.

Ok, so the results are in from today's appointment.

For those playing the pool,
Last stats:
prediction was: "I will walk with no transfusion
to guess a number, 76K"

reality was 50k
and my cyclosporin levels in my body were half than needed to be therapeutic
(cyclosporin being the bone marrow transplant *non-rejection* caplets I take, keeping the oven on for the hopeful platelet-baking. So, I increase my dosage back up to my hospital levels again. Hey, no problem. Twice the Rx price and shaky hands, but hey, not so long ago, aplastic anemia was incurable. So, hug a scientist today.)

BUT to me, this is still win-win situation.
Win one, no transfusion, and all other blood counts and levels were good and strong white and red blood cells. And the doctor will readjust my cyclosporin levels to kick up the heat. Thank you, God, for Better Living Through Chemistry. Win two, I seem to be keeping divinely donated platelets for a little longer intervals -- trying to eat all the folic acid I can, freshest ingredients, resisting processed and choosing whole foods, and treating the donated platelets with care and respect. As far as eating goes, I was like this before, but now, it's sheer appreciation to the donors and also, the labmonkie in me experimenting. The only thing I need to add back in this experiment is naps. For real. I watched it work on my serum sickness. Two hours of deep sleep and my bruising would heal, seriously. Sleep is so restorative.

Wishing sometimes, longing really, for one, delicately-shaped, thin crystal-etched glass of full-bodied Cabernet Sauvignon, don't care which -- a pretty label would do. But we all know it thins the blood, so I will wait until I toast my own home-grown platelets, hopefully with a big slice of red velvet cake with buttercream icing somewhere in March. Or, before. I got The Fight in me. Today I realized, I'm from Mississippi. Still. With fire. It's official. Funny story if ya got the time...

I will write it here when I get back from loading up the birdfeeders. Basically, it involves a bad-looking neighborhood stray cat taunting my mom's cat in the backyard, and me, snapping into Firey Mississippi Girl Mode, automatically grabbing the bb-gun from the umbrella stand (yeah, I know) with my sweetheart PICC Line arm, not even thinking and pumping it up twice to sharp-shoot his unwelcome ass accompanied with a blue-stream of Southernisms which I can only describe as *something that sounded exactly like what my dad woulda hollered at 'im.* Don't worry, I didn't hit him. But son, I coulda put it right in his bb-hole. Hate to brag about my sharp-shooting abilities, but again, Mississippi Girls ain't braggin' when it's the truth. And that's when I came to, and thought, "Oh damn, my PICC line arm...shoo, good, it didn't pop loose and bleed. Girl! Dang you! Get your butt in here and sit down and eat your fried chicken (after giving all the fried parts to my mom and eating only the nutritious, meaty parts) while its hot. You can't build a platelet yet, but you're home from the inside-out, and you @#$%in' will build yer own platelets, girl." And, I love that part of a Missisippi Girl.

Ok, so that was my funny story I was gonna write in there. So, done that. Nevermind. Now, on to that therapeutic nap I told you I was going to add back into the mix -- I call it the "Shooting Aplastic Anemia in the BB-Hole with Nutrition, Meds, Rest, God/Good and His Friends, You" Experiment. My chemist (and sharp-shooting Special Forces) Daddy would be so proud of me.

Tomorrow's post will be shorter. (Yeah, right!)

But just had to say, feeling good. Actually, too good. Inside and out. Like a million tax-free bucks. Scary. Have addicted my mom to selling books at amazon.com (sales have been steady - she's an avid reader and keeps the books immaculate), going to get her hooked on eBay soon (she's loving this paring down of Her Stuff), helping her with business matters involving my Dad's death, enjoying her friends, enjoying her church, her pastor Ross Olivier from South Africa...stunning topics he talks, was a prisoner in a South African prison, yes -- a fascinating story. Plus I just have to say, I love his accent. So, we went today, really nice, they'd tributed all the people passed in 2006, my Dad in the rollcall, today's podcast to be in here soon. (Wow, site updated with Flash intro.)

Anyway, except for this *not making platelets thing*, I've gotten more done in the past two weeks than the last 13 years. What gives?

Ok, off to the update, doctor's appointment tomorrow: My prediction, based on me getting used to my body's routine -- I have lost a few platelets, but my number will be high. We'll see.

You know, I feel so well (meds, recovery, God/good and the earthly angels to me, all of y'all, the exceptional care of UMC Jackson and Drs. Joe Files and Carolyn Bigelow and too many staff at the Adult Hematology/Oncology Clinic UMC and UMC Bone Marrow Transplant Unit to mention, and I'd also like to thank The Academy for my mother's magic wand with this saving my life thing,), I have purposefully become my mother's House Elf.

"Want me to do laundry, want a cup of coffee, need the trash taken out? Birdfeeders filled? How 'bout that hottub back there - let's get it serviced."

Got this PICC Line right arm humming and clicking away like a sweet, vanilla-scented Valentine candy arm. I'm literally in love with it because it means they just fill me up right there, in my right arm, rather than stick me (no good veins, and me with the blood disorder - that's me). I feel bionic. I have a digiphoto, but haven't posted it since I know it might gross some of you out (Ron). Not me. It fascinates me. "What the PICC Arm Wants, The PICC Arms Gets" is my motto. Swedish massage with scented oils and powder? You got it, Valentine. Now, let's go outside and fill up birdfeeders. I love you, PICC Line.

Started thinking about irony. So, this whole itp/aplastic anemia thing started because, what, they don't know, someone walked by me and sneezed some vague virus in my face on an elevator ride way back in 2006, right? Never even knew it. Me, I stayed tired, so who could tell. Life was just pure stress for a long time, and that sets off itp-like disorders. (That is why I stress to you, do not stress.) So, my body did what bodies do -- switched on antibodies and started cleaning house, as antibodies are designed. And then, in an innocent-but-ugly turn, they never switched off and began attacking healthy cells, my platelets and maybe stem cells. In the end, they over-cleaned me.

Irony: I'm running around this house just exactly like an antibody gone wild. I've cleaned everything in this house, and started longing to pick up sticks in the yard. Am I just dangerous? Will I begin attacking my mother's small dishes (bad attempt at making a jokey reference to "platelets", sorry.)

No. I will just end up selling them on eBay for her.

I'm so funny, right? You just have to laugh. Throw me a bone. With some marrow in it!


For those playing the pool,
Last stats:
last visit, scored big from some divine donor,
ending up with a post-count of 91k,
which is the highest platelet count
I have probably had in months, unknowingly.
tomorrow: I will walk with no tranfusion
to guess a number, 76K

Soon, I will be guessing how many days between doctor's visits.
At first, it was "come in every 2-3 days",
this last batch has lasted 5 days, I can tell,
but until I make my own, they say, in the next two months...
argghh...my life in Memphis, remember?
when do I get back to it...
will the doctors here stop loving me because
me'n'mo stop coming, bearing donuts...
the story goes on, only days at a time... and boy,
this has taught me something I never had before:
patience and the true meaning of being a patient.


short-term goal: 100k
long-term goal: 315k

Even though sensei is Japanese not Vietnamese, you get the idea.

Number one, I hope you are having a great weekend. Man, I still live for Saturdays and Sundays. If you are reading this, stop reading, go go go. Read later. Go.

But as for an update, I go back to the doctor on Monday. It's been a lazy day here. Rain, Lemon Zinger Tea, but nicely productive, wrapping packages up for the post. Showed my mom how to sell books on amazon.com yesterday, and, snap, we sold two books like that. Well, she's *cough* hooked. It's like fishing, except without the beer-bellies and sunscreen.

But in my quest to keep my donated platelets and build my own soon, I have researched a lot on nutrition. Really, I have found a lot of things that bust up platelets, but not a lot that supposedly build them besides These Wonderful Meds and the ol' skeleton. Folic acid was the only thing I read that may at least *do something beneficial to help keep and build,* so I have been at that orange juice, and the leafiest, greenest veggies plus avocados and just wonderfully-crafted salads. And Bushra dear! Thank your dad for me for the spanish onion suggestion and thumbs-up to leafy veg -- anything else recommended for us aplastic anemia babes (that's me), pass 'er this way.

But, between the vegs, I did manage in a Kit Kat Chocolate Mocha or so (limited edition, good excuse, huh?) and maybe a Lindt Lindor Extra Dark Chocolate (hey, cool candy blog here). Look. I may not be able to clot, but I'm not made of stone.



Ooo. Big scans. Also got mom a new scanner here (yayyy), can y'tell?

I also want to thank My Most Awesomest Pho Ga Friends, Kevin and Ralph, sending the unbelievable package to mamasan and me the other day, filled with all the stock-makings and absolute goodies galore for preparing spring rolls and pho ga. Honestly. My mom kept pulling out surprises and physically ran off with the *rooster sauce* over her head squealing "mine, mine!" like she was a gameshow contestant.

Which, most days, she is. She's more than a handful.

(Ralph, Kevin, have I told you how much I love ya? Yeah, you'll get tired of that after awhile.)
Because I'm so lazy but still wanted to show you the pics and also the link to the spring roll recipe at Digs Magazine (cool site, dude!), following is the email to Kevin and Ralph, "The Two Best Pho-King Guys, Down Like Four Flat Tires":

Check out the attached cellphone pic -- if you are wondering where the spring rolls are, we snarfed them last night. Had I been thinking, could've phoned those, too, but Sue went whirlin' dervish on them and had a BLAST making them. I peeled shrimp and let 'er rip. It was her first time, and she is now the sensei.

Today, she brewed us up this batch of the pho ga -- all of it was so pho king good -- we *double-heart* you both so much that we can hardly contain ourselves. This is giving her too much energy. I have secretly switched her to decaf. Seriously.

xox - bny

ps: I also attached a photo of her harassing me in the platelet-transy room, as I call it. She needs to stop.


She's going to prick me in my sleep and let me bleed dry when she realizes I've posted her photo on the internet. That's what you get for scratching on the door like a cat when I'm in the toilet. Why do you devil me, woman??

Ding-ding-ding! But, closer to my short-term goal...

Ok, ok, so I admit it -- I'm no gambler. This is why I only go to casinos for the steakhouse and the occasional Rick Springfield concert.

It was a fullhouse at the clinic today, but they run it like absolute clockwork. I rarely start up a conversation with people, anywhere, but I gave it a try. Plus this is Mississippi, and man, I totally forgot that in Mississippi, meeting people in checkout lines at grocery stores and exchanging recipes is just The Way It Is. Everyone here talks to each other. And my Southern drawl is firmly back in place. I sound like Barney Fife from Mayberry.

Anyway, hard as this is to believe, I rarely speak unless spoken to. But when in Mississippi, I decided to do as it is done -- so, here goes:

I zero in on him, zippin' around on a metal-flecked, cherry-red electric scooter, a chemo-balded man in his early 60s, carefully-dressed but with no particular color scheme in mind, with his pressed, striped dress shirt and wide, black suspenders, pants too short, baby blue socks that went with nothing and his suit coat draped on the back of his scooter seat. Me, with cancer? I'd be in my bathrobe and fuzzy socks, looking like a newly-hatched, chewed-up baby chick.

So immediately, I figured he was my kind of guy. I sat down to wait my turn now. "Hello there. How're you feeling, huh?" Looking down around at himself, he says, "I'm ok, I guess." Then I got him to talk about how cool his scooter was. I could tell he was proud of it by the way he was driving it. Tried to talk like my dad, "Boy, that thing looks like it turns on a dime. You really do fly on that thing." Then he got proud of the whole ride. Has another, too, with four wheels, "More stable, but not like this one." That one was His Baby. "Well, I personally like the color." He smiled, suffered me gladly I hope, got his shot of Procrit, and we bid each other farewell, telling each other we're both going to be well, and he punched an extra-squeaky, rubber wheelie around the corner for me and down the hall. Burn rubber, young man, burn it well.

I get my blood drawn, they run my bloodwork, then the nurse comes in and before she tells me my winning number, she asks how I feel. What, so then I get this instant headache in the center of my head. "I feel like a 36. You tell me." She says, "You're at 17k, come on back, we'll getcha some platelets. You o-positive?" Me, "Oh yes, so very."

Hey, if nothing else, numbers-wise, I'm catching on to this thing. I was right with the 17k prediction. But the Yardener in me is impatient to start growing her own.

The way I look at this, either way, the day was a winner.


Last stats:
01/21/01, scored big with loss only down to 20k
today, 17k but scored big with a nice, dark batch of platelets from some divine donor,
and ended up with a post-count of 91k, which is the highest platelet count I have probably had in months, unknowingly


short-term goal: 100k
long-term goal: 315k

For the football pool, last time, I was holdin' at 20k.

Off to doctor tomorrow. Man, this aplastic anemia-itp thing is a full-time job. I should've read the fine print before someone sneezed a virus into my body.

Bettin' Time!
The odds wager I need some platelets.
But, shaking the Magic 8-Ball, double-jinx-no-whammy...
if I had to guess, I'd say "no platelet transfusion" tomorrow.
No jinx, no jinx, no jinx.

Last stats:
01/16/07, platelet count @ 36k
01/19/07, down to 24k
01/21/01, scored big with only down to 20k

Tomorrow, they'd expect 10-15k, I betcha.
Equals transfusion time.
But me? C'monnnnn 56k, but feelin' real at 36k.

short-term goal: 100k
long-term goal: 315k

Goodnight, babies. Thank you for playing.
Winner gets freshly-baked cookies.
Hell. You all will once I'm back in business.

And the results are in: I stink.

I stink because instead of instead of immediately posting the what-I-say-is-good-news, me'n'mo had some freedom today. This monkie-in-the-bubble went outside in the fresh air today, and took photos.

In other words:

Got all packed up to stay for awhile at clinic, expecting platelets (based on my track record so far). But during the time I rest, I think about visualization like my aunt told me to do. I said, "I don't know how to do that, man." But she said, "Try it." Since she has battled, rallied, and won her fight with breast cancer for the last 3 years, is it now, gee whiz -- I'm taking her every word for it, yep. Plus she knows how to grow soybeans, cotton, and pretty much anything else you can grow.

So, I think of a number. And, I eat My Folic Acid Experiment -- leafy green spinach/spring mix, avocado, cucumber, dried cherry, vegetable-laden, kalamati olive, feta cheese, basamic and sesame or olive oil salads with protein of choice on side everyday, with orange juice. (My Experiment today was to obviously shift into all fried chicken livers [yeah, I admit it] and chocolate cookies, I guess to celebrate, huh? Let's see if it makes a difference. Wait, I ate carrots. It was penance. Penance carrots.)

So anyway, to visualize, I've just been shooting higher in my head during Cyclosporin, thinking "56, 56, 56."

Last platelet count on Friday was 24k -- this morning, I expected 10-17k, but I got a 20k! No transfusion. Next clinic visit is Wednesday.

The way that I look at that is (1) "holding platelets" and in my mind, I say, (2) "building platelets". I also reckon since I'm growing a groovy, side-effect moustache, I HAVE to be growing platelets, too, right? Roll up and see the bearded lady. Bring the kids!

So anyway, me and the mom just stood there and looked at each other at clinic, like uhm, free? What is this "free"?...then I said to my saint of a mama, my showtune-singing friend whether I like it or not, "Whatever YOU wanna do, we're doing it." And we did. Bought some beads, bought some white roses to spruce-up and Valentine-up my dad's *campsite* (hate to brag, but that man has a nice plot, wanna see pics?), took her out for a meal that she didn't have to cook, and loved every minute if it.

Commercial break: She just stopped me, has no idea I'm writing over here about her. She stood up from the couch and put her hands on her hips, and said, "'Ey, Look at me, I'm dancin'," and started shakin' it. No reason. I laughed, "What would Daddy say about you doin' that spontaneous dance?" She said, "He'd say, 'What's wrong witchu, yacrazysummabeep?', and I'd say, 'Oh you can't charm me that easily!' and keep on dancin' and singin'..." I really don't see any hope or need for me ever being normal.

So here's a cellpicture of his campsite view. I'm standing by the coolest two trees that have grown together at the base and entwine each other -- an oak and a cypress.


There's a tiny white dot up in there that's a crane, see it? Me neither. But we also saw a wood duck mother and two babies. And here's my dad's little roses on the campsite, Spooner being a family name he was proud of. They almost named me "Spooner", I think. I'd have liked it. I'm sure my schoolmates would've pelted me with rocks on a daily basis though. Builds character.

You know...

Except for this "Making No Platelets in My Buttbone on My Own" gig and quite possibly growing a full beard from Cyclosporin, I gotta say, with just the right mix of meds for me, I could at the very least wax your car. Lefthanded. For free. I'm definitely considering it. Definitely. Extremely productive when awake.

Should channel this energy into Blood Drives instead though.

Off to doctor tomorrow, wagering I need some platelets. Who's a gamblin' man?

Last stats:
platelet count 36k @ 01/16/07,
to 24k @ 01/19/07
01/21/01 -- I feel a healthy, wealthy 56k
but I wager a healthy, infusable 17k

short-term goal: 100k
long-term goal: 315k

Yeah, I apologize. I'm boring myself with this, too. Pray for my mom that she hits me in the back of the head with a shovel so we can go to sleep tonight.

She's flipping at the tv watching "Iron Chef America", and I asked what food they're competing with -- she said "beets." I paused. I tried not to, but I said, "I'm sorry that you have to hear this, but that means they're having a 'Beet Off'...hee hee hee. Y'know?" She's gone to the garden shed to get the shovel. Goodnight!

Good news for you! The world's shortest post from me so far

Enjoy my unusual shortwind while you can, but I wanted to update quickly after today's doctor's appointment.

Latest stats:
hematocrit number was low, so I got 2 bags of O+ blood (thank you, anonymous blood donors! kisskisskiss)

platelet count only fell from 36k 01/16/07 to 24k today 01/19/07

What's this mean? Platelets low, sure, but good news as far as I'm concerned. I go back Monday if I can hold a good number and will get platelets. And watch me hold a good number.

So, this has preheated my E-Z-Bake buttbone oven with two bags of blood, and now I'm off to take good care of those new red blood cells and take care/no running with scissors/perhaps bake up some baby platelets myself because they didn't transfuse me with any today. If you need to know straight from the Horse Serum's Mouth, I absolutely believe rest heals and restores your body; no overworking for you anymore; do not let anyone take away your sleep, babies. In fact, I coulda showed the restorative effects with photos with what just a two-hour nap did to heal my body, but dude, I respect you too much to do that to you. Really, I do.

Tonight when I'm dosed in the PredniZone, I will return emails I have been writing in my mind for days now, I promise. But for now, zzzzzzzzzzzzzz oh, and you -- have I told you lately that you're awesome? Oh, and one more thing, if you don't get out and enjoy the weekend, I'll flip you like a pancake! With maple syrup if you need it.

Finger and toe crossing works: Good doctor report today -

Serum sickness is healing. Lovely! I won't miss looking like Rip Taylor's bucket of confetti and feeling just bad enough to almost tell the woman in the waiting room sitting next to me to "Please, Shut Your Piehole." Which almost happened last Thursday. But from the look on her face, I didn't say it. I must be feeling stronger inside enough to get hacked off to begin with and mainly to control myself. But man, she beat everything. With a stick.

She got in my face, right up in my personal space, with my brain quickly referencing my last batch of white cell counts. My mother knows her and helped treat her at this clinic 15 years ago, so she introduced her to me, telling her about my ITP. This woman lit up like a spotlight and leaned in with rapid-fire sentences (ps: don't do this to someone on Prednisone, lights and volume hurt),

"Oh no. Do you have ITP? Oh, I have ITP! I've had it for 15 years. Oh oh, but I don't have it anymore. Oh, yeah, it's bad, isn't it! Yes, it is. Me, I'm here today, I just had a li'l petechiae here and a bruise pop up right here, and so, here I am, I came in to get my platelet count because I'm going out of town! Is that petechiae you have? Oh let me see...oh my, no, that's not petechiae. That looks like welts. Oh no, you have something else. Definitely something else. Hey look at this (beckoning stranger across the room), she has something all over, but it's not petechiae. That looks serious." At this point, I almost said, "Yes, I do have something. It's called KMA. That means Kiss My Ass. Now Stop It."

My dad shoulda never taught me that KMA thing as a child. But it just comes in handy sometimes. Actually, a lot of times.

Luckily, the nurse called the woman in for her bloodwork. I blearily turned to my mother with all the might I remember and said, "Did I hit her in the head with this water bottle?" She said, "No. They called her back. I'm sorry. She's nuts, bless 'er. Can you believe she's a therapist?" I thought, "Good Lord, Physician, heal thyself," and tried to think of the Benadryl I was soon to take. I think I love Benadryl now. Love is funny like that, isn't it?

I'm sorry, but I thought that story was funny, so onto the Good Report:
Latest stats:
last platelet transfusion (two-bagger) was last Friday @ 68k
rechecked them Sunday, only fallen to 47k (translate: a nice hold)
today, my platelet count held well @ 37k (translate: this is very good news)
because usually, at this point, I'm at 11k and ready for a platelet transfusion, but not today!

Gimme about 278k more, baby, and that's my goal within the next 3 months -- to be back where I was last October 2005. Oblivious, on the outside, but high-normal with 315k -- with a new career helping people with blood drives and hopefully any type of healing I can offer.

If I haven't reinforced this, put this in your PDA, write it on your mirror in lipstick, post-it to your manager's forehead: Get your annual checkup no-fail, people. I almost called in sick for mine this past October, thinking, eh, too tired, what's the use, sure I'm fine. But why do I have three bruises on my leg shaped like the dog's paw? Get your CBC, rest and play, and eat your goodies.

This is good news. I may be making my own platelets. Brewing up a baby cuppa platelets from the inside out! The counts will go up and down, but this is good -- can even make my mom coffee in the mornings and bring it to her in bed so we can gossip and gab like yawny roommates. Which is so much more suitable for me than shuffling around trying to Not Bruise Anything Like an Overripe Banana. God love that mother o' mine, between her and the exceptional care at UMC, I have been taken care of like no other facility in this region. Can't brag on them enough. Ask me if you ever need a good doctor, which I hope you don't.

Only one, teeeeeeeeeny complaint: I miss the HECK outta my PG Tips only because I'm avoiding caffeine. How long will that last? Oh for sure, I miss my afternoon teatime. And watching "Wallace and Gromit" only makes me hungry for m' PG Tips and cheeeeeeeeese. Although I have never had Wensleydale. Oh, I will though!

You know what else I've been doing? Eating even more of those green leafy veggies, extra virgin olive oil, with grapes and avocados and pears and apples and dried cherries (need to throw in some cheeses and pumpkin seeds soon), and more folic acid in oranges and juice but stay away from the grapefruit if your meds won't allow it. Can't wait to get back to some tandoori chicken and sushi and Los Compadres' fresh chicken soup. Been researching more foods for Very O+. Will update soon.

So anyway, you know what I want you to do? The exact same -- stay healthy, steam it slightly if you don't like the raw. Wilt some kale with a grating of nutmeg (which goes well on any dark leafy green). But dang it, do live a little with some greasy corn chips, or sweets -- chocolate, I say -- dark Cadbury's with or without fruit and nuts should do it. So do it. And take a nap when you need it. Trust me, you need it. I didn't before. But I swear, it reboots your buttbone.

And trust me, you want that.

NUMBER ONE: This goes to Bart, Mamie and Hannah

Bart! What is this with the arterial fibrilation! Can I tell you something you asked in the comment -- Protonix. That is what I used for my hearty-attacky acid reflux. But you, my friend, you won't need that. You are officially in the thoughts and prayers of some Mighty Good Stuff down this way. We love you and Mamie and Hannah, and will do anything for you that you need. Maybe you are having withdrawal from Gus's chicken wings. Eh? But I forgot to tell you that I'm all psychic and stuff, and not only will you get better, but you will kick some major ass-ibrilation. Switch from beer to red wine. It made my heart rate so good at a resting state that in the hospital, they told me it was too healthy/too low. We love you, and remember, Hannah's birthday's coming up, and you are going to need your strength. Long live on, m' brother, cheers to your beautiful wife, and that absolute gem of a truck-driving daughter.



Number Two, Just to Update:

Had some problems this week -- got something on arms and legs I thought was called petechiae, but it wasn't -- it was serum sickness from coming off my steroids too fast. Long story that I won't get onto, and if I tell you the difference between a bad case of petechiae and the onslaught of serum sickness, you will never be able to look at a muffaletta with cotto salami again. Steroids are Ze Naughty Goddess what gives with one hand and takes with the other, but you know, I'd suck up a serum made outta horses to get over this aplastic anemia business. Wait. That's what I did already. Skip that part, and God willing, my bone marrow will bake me up a nice batch of platelets without doing that. Watch me burn, baby!

Latest stats:
Wednesday, checked-in with what I thought was grody petechiae and terrible, lumpy hand and feet cramps; platelet count was 36K so was sent home until Friday.

Friday, diagnosed with serum sickness instead of petechiae, platelets @ 17k.
Asked doctor, "What did I do?" He laughed at me and said, "I did that to you, I gave you the serum!" Trust me, I love him and a laugh from him means he'll heal me.
But not after he brought in the cutest doctor also following my case -- looks just like Noah Wiley from the tv show, "ER", and he looked at my new afflictions, wide-eyed, and said, "Ohhhh...so...how ya feelin'?" And I busted out laughing and shook my head. He put his hand on my head, and said, "No more heart pains though?" I said, "Heart pains? What heart pains?" ("Can I have your autograph?" Must be getting better, eh?) Honestly, they should've taken photos of this serum sickness skin outbreak because it is a learning hospital, and it's set everyone's eyes to a size 12 1/2 so far.

So, got my a big shot of steroids and after bag of platelets, transfused @ 68k (I'll take it), and increased oral steroids to fight serum sickness.

Sunday (today), went in for platelet count, and it was hanging at 48k! This is good news -- usually, my track record would have been a low 10-17k, but baby, eat your greens and folic acid with avocados -- and, most importantly, take a relaxant -- Valium, Zoloft, whatever you need -- and watch "Creature Comforts" by Nick Park.

Going back to doctor next Tuesday. Let's see what that count is then.

I'm back. And that horse kicked my ass.

You know, I had no idea how hard this treatment was going to be. Ignorance is bliss. And I am so incredibly, blissfully ignorant. I love being ignorant when it comes to all this.

So this may be a long one since this is the first day I could type and have watched everything on tv probably 3 times, and I hardly everrrr watched tv before all this -- I'm feeling rather full of myself just because I got topped off with enough platelets to keep me clotty for the next 3 days.

Latest stats:
today before transfusion @ 17k
after bag one transfusion 29k
after bag two transfusion 79k

For the last 6 months, my life has been a dogtrot on the highway. I thought the worst thing that could happen was when my dad died in July. But actually, he was such a good man, I was left with more peace and laughter than anything else. And I have had the honor to meet so many of my parents' friends, I am overwhelmed daily. It still doesn't mean I don't cry everytime I see something to remind me of him, which is everywhere. But when he died holding my hand, I swear he travelled through me and is still with me today. In the hospital especially, I'd feel like he was peeking out of my face. Mostly reminding me that my mom was with me, and that I promised to look after her. As I was feeling guilty for being sick and helpless the other day, she told me, "I feel guilty. I love to doctor on you. It's all I know." Well, I'll be damned. When I told my dad right before he died that I'd take care of her, I had no idea we'd be looking after each other like this. So Daddy...you knew, but man, thanks for not telling me. Airborne.

Of course, hallucinate with a blood pressure of 210 over 120 two nights in a row until 5am and you start collecting truths -- everything leading up to this since July -- my father dies, my disk finally herniates, I get *restructured* from a company with no structure and a job that was slowly killing me, and a couple of other things along the way that are way petty have now turned to nothing but trivial -- my life has changed 180 degrees, and despite it all, I take it as positive. Plus, this may have been one hell of a way to go about it, but hey, I'm off caffeine these days. Just tell me I can't find a positive note, I dare ya!

Even though I could drink red wine until the cows came home and have always tended to eat healthy, decent foods (stopped eating red meat toward the end here and prefer vegan alternatives), I have to tell you this -- if it'd help me make platelets, I might hit a cow square in the face with a shovel now. I'd feel really bad about it, but I'd just have to get over it.

My new best friends, and you should think about befriending them to, they are Good For You and Yes, I Actually Care:

Low sodium food -- there's a huge variety to choose from that have vastly improved like Lean Cuisine, South Beach, Healthy Choice, Campbell Advance -- you know, if this was the 50s, I'd die from starvation and boredom because all they had back then was celery, buttermilk, cottage cheese and Menthol cigarettes.

Low sodium/No Caffeine drinks like Sprite Zero, Sierra Mist Free, and Diet Rite Raspberry

Complete All-Bran Cereal (choke it down on top of ice cream. Hey. Calcium)

Great Harvest local bakery -- I just can't even begin to describe that place but I will go into later, because you need to know about it.

More new best friends, Rx in nature:
Protonix for that acid reflux which does feel heart attacky

Lassex injectable diurectics (warm dose goes to face, then down to feet, then up to Harry Potter's Platform 9 3/4ths, so grab the ole Mike Watowski for the Porcelain Waltz.)

Hydrocholorthiazide, for high blood pressure and being able to remember such a word makes you an instant, yet boring, dollar-store sesquipedalian at the next office meeting.

Ambien

and the lovely and always noble Prince Valium.

Loritab is nice as well.

Don't Go Ask Alice. Just Ask Me.


Scheduled to stay in the hospital only 4 days, I had to stay 7 days which was a-ok to me, as long as they were monitoring me. To spare you the details but to explain a bit, I went through a treatment of 4 days worth of bagged IV drip chemo meds called ATGam. Along with the bags, I took two doses, 12 hours apart, of Cyclosporin. The two together were like and atomic bomb. And I'm not joking about this, the hospital food was so good, but I think it was a huge factor in my problems. I never in a year eat the foods they serve -- rich foods like biscuits and yeast rolls, fried catfish if you can believe that, and desserts that I have only twice a year. This could explain my anemia, but no. It was almost 3 days into before I saw a piece of wheat bread. At that point, I almost wept.

In retrospect, I'm sure I probably did. The steroids were massive injections, and they made me bawl like a baby. But I got to hold my stuffed tiger baby,"Killer", named after my Auntie Kay. He's almost as good a hugger as she is. Thank you for my roaring antibody Killer, Kay.

Oh, but I have a new best friend/nagging neighbor -- the PICC line in my right arm. It's a permanent fixture in my right arm for as long as my body can stand it. My body better be stronger than me, because I keep having thoughts of "eewwwwwwwwwwww" everytime I look at it. I can't lift my right arm over my head because I spring a leak and freak out. Problem is, they sutured it the second day I had it, and I was beginning to swell to 16 pounds over 2 days. The nurse who sewed it in didn't even give me a stick to bite on when she did it. "You should feel a slight pinch...did that hurt?" You know, any professional I have mentioned that to since gives me The Look, saying she was way rude to suture me without candy. But can I tell you what works for me? Staring at a point very far away in the sky and watching clouds turn inside out. Honestly. Oh, that and my blissful ignorance. Key for me is ignorance.

I nicknamed my IV pole Mike Watowski, since he is of Polish descent. He was my New Year's Eve date. He was a lot better than the first IV pole I had, named Larry. He squeaked like a bad shopping cart, so he had to go.

Besides wetwipes at rib joints, you know what else I will never again take for granted? Peeing without dragging around a pole named Mike Watowski in the bathroom with you. But I tell you, I'm not here to complain, just explain. Every person who took care of me, except for that charge nurse who came in with a syringe of morphine and a threat, was straight from God. There's no way I can tell you how divine those people were -- friends and staff from God. And that is not the Valium talking. It's just a side of good I haven't seen in so long in my industry, my bones longed for it literally and figuratively, I didn't think it still existed. But thank God, it does. I'm in to repay.

Long update, but I'll blame the steroids. Lucky for you, I have a block of "Frasier" to watch before I dose myself up for the nightynight. What's next for me: Bi-weekly tranfusions of platelets until I make my own, which may take up to 3 months to get rebooted in my buttbone. I don't want to know what happens if they don't reboot, so as far as I am concerned, it's not "if" but "when".

This Immune Thrombocytopenic Purpura, how did all this happen? The professional and expert answer is, "It just happens."