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

Off to the doctor today

It's been two weeks now since the last doctor's visit. What have I learned since then? That taking 400 mg of cyclosporin daily without so many steroids not only makes Mr. McKinley's Snake Oil Salesman Handlebar Moustaches bigger, but it also makes you r-e-a-l-l-y t-i-r-e-d. But on the plus side, my eyelashes are l-o-n-g. Good. They will distract from the beard. But as long as they grow platelets, I couldn't care much less because it's all Just Temporary.

Anyone still playing the guessing game of "How many platelets will she have this time"? I feel obligated to...

Last time, my butt bone was victorius in making 46k platelets.
My math-cheating mom says that averages into 500k a day, so her guess would rationally 14 times 500 which equals 7k, so 53k, but she now is says "Oh, I'm no good at this. But I'll guess you've picked up exponentially"...
Which is my guess, I'd say I'm well into the 100k range...126k? 199k?...I'll take 99k!

Whoever gets closest gets a bag of jellybeans! Back later with the results. I'll be the bearded lady, yawning...

ps: Sissy...how is your arm, your sinuses, and Little Man Tucker? And hello to Melinda and Hank! Also, to Bushra -- yay, okra! How 'bout brussel sprouts? To Tara, congratulations again! And to Mamie, if lovin' you is wrong, I don't wanna be right either, girlie ~ you made me smile with that, as usual! ~ hug baby girl Hannah for me and give Bart a hug, too, while your at it!

House is good! Still have Memphis-itis though...

Just flew back in from Memphis last night and boy, are my arms tired. Oh, how funny. No, but I got to drive my car back and sing at the top of my lungs to Judy Garland. Thank you to Dan B for leaving this Judy Garland Experience link over at The Yarden (where I'll be today, again, taking a wad of photos I'll promise to post and then disappear, as usual).

Thank you for cleaning up the house, Ron, looks good. I brought back my potted roses to start them over again. I'm still allergic to Memphis, waking up with a sore throat and scratchy eyes. I'm tellin' ya, there is something about Memphis that'll make you have an allergy attack. I know it was a factor in finally setting off my ITP /auto-immune platelet-eating blood disorder. That plus a strange virus-caught-on-the-train-I-bet plus stress. So don't ride the train, don't stress out, and don't live in Memphis when the cottonwood blooms. Easy enough, right? No. Everyone has allergies in Memphis. I call it "Memphis-itis." But it is a beautiful place to live, by the river, and also down in the historic areas like Central Gardens and other places in Midtown. I just don't feel like dying there. I'm just sayin'!

Just not going to tell the doctor that I strayed 3 hours north from his exceptional care, dosing with platelet-pumping, beard-growing, character-building yet immune-system-suppressing Cyclosporine before I reached my safe-platelet level to travel, around 100-140k or so, but I know he'd have done the same. He's a tough soldier, too.

Ok, I'm out to The Yarden if it kills me. Which, it won't!

Last platelet count was 46k over 9 days. I predict over 100k on next doctor's appointment ~ Tuesday, February 27th.

Have I mentioned lately how much I love and respect horse serum and modern medicine combined with proper nutrition and care? I need to at Very O+...done, on The List.

xox - bny

"R-a-m-b-l-i-n...apostrophe" ~ Steve Martin

Speaking of, I'm offline for a couple of days to travel 210 miles north to Memphis until Wednesday. I have 1.2 million things to get done before my next doctor's appointment next Tuesday. While my platelets are soaring (I believe), I need to check on my house (see a photo of it in the recent snow ~ thank you for the photo, Ron) and all the other things I left behind way back in Decemeber 2006. How many days has it been now ~ like, 70? Can't wait to weed my tiny little yarden, combing the knots out of its hair like a sad, rained-on ragdoll. Can't wait to clean the wood floors and vaccuum the baseboards until they sparkle. Call me crazy, but all I can say is "I love my purple Dyson." Just don't tell the PICC Line. He's the jealous type.

Back in a few days, hope you are all well with a touch of spring fever!

xox - bny

ps: Sissy ~ Need to know how your doctor's appointment came out ~ how is your arm/is it broken? Call us on Ma's cellphone!

Valentine's Day Blood Drive In Jackson, MS

By 12:15pm today, the Mississippi Blood Services has had over 220 donors. One blood donation can save up to 3 lives with what I've started calling The Trinity ~ red blood cells, white blood cells, and platelets. People are standing in line to give their blood freely. I swear. That is way past "love", it's amazing. If I could donate, I would ~ but this is the only way I can donate by spreading the word.

The blood drive will be going on all day today until 7:00pm on Lakeland Drive. You'll get a Marshall Ramsey t-shirt if you donate. Hug a blood donor today. And thanks to WLBT for the live report.

Warning: Meet My New Valentine

I posted this at Very O+, too, but thought it might also be helpful here if you are researching any information about PICC Lines. I was terrified of getting one, mainly because with ITP and aplastic anemia and all the negative articles and postings I was reading already, it was just another thing that scared the beejoobies out of me: having a plastic tube inserted into my vein and over to my heart. But trust me, if this has been suggested to you by a professional as needed for your medical treatment, take it. It won't take you long to get used to it with proper care.


Don't look if you are gonna be grossed out, but I wanted to show you the new love of my life ~ my PICC Line, the direct line to my life with aplastic anemia and my heart. Literally.




"Ok, she had me up until this picture, and now I'm totally grossed out. Why did she post this picture? What drug is she on? And why is her new favorite word 'literally'...?"

No no no, you don't understand. Give my new man a chance. I love him. He has a face that only a mother could love. But this bionic-looking invention means that instead of getting one thousand needle-sticks by now, I just give blood samples and receive tranfusions and even medications like steroids through this line. The end.

What's my point: If you are scared of getting a PICC Line, please don't be. Odds are, the professionals have suggested it to you for a good reason such as you have crappy, tiny veins like me, and this is the best thing for you to do.

One day, as I was getting a benadryl-dozy platelet tranfusion (I'm a relatively happy, cheap date on benadryl), the PICC Line nurse told me, "You know, we have a patient who refused a PICC Line because he's afraid of the idea. We don't know what to do. He's going to have a hard time. He's thinking about not even taking the treatment." That broke my heart. I immediately asked for the universe to intervene and make this man come to his senses. Modern medical technology is a gift, and for a reason. I wish that American pharmaceutical companies spent more on researching new drugs than giving out free keychains and squeezy balls and logo-emblazoned trinkets and free lunches since there is no such thing as a free lunch, or a free kitten, if you need to know the truth...

Not that I'm saying you need to eat a kitten for lunch...am I ranting? Must be the hormones.

What I'm saying is: If anyone googles to this page looking for information on a PICC Line, scared to death of the whole idea like I was, trust me ~ it only hurts for a little while, you'll get used to it, and it's the best thing you can ever do in this case.

Speaking of necessary pain that only hurts for so long, keep your insurance premiums current and paid. This amazing stuff isn't cheap (thanks to free lunches, passing the savings on to you and the hospital). The cost of the drug ATGam I took in the IV for 4 days alone was $28,000. My point is that the minute you think you don't need insurance, you might as well gamble the deed to your house on the craps table. Or stick your kitty in a slot machine. Me-OW.

Not to scare you, nothing to be frightened of, just get the care you need. And plenty of love. Aww.

~ Happy Valentine's Day, go forth and eat candy! ~

"Gross! She posted another picture of, what, her getting platelets...ewwww. Hey. Dang...steroids went straight to her, uhhh, chest...area. Well then...maybe this PICC Line thing isn't such a bad idea after all."

Today's Update: I say we both won.

For those playing the platelet-growing pool,

Last stats:
Last Friday, I had 29k.
Yesterday, feeling 56k, I guessed 36k, and
Mathwhiz-cheater mom guessed 31k.
Reality: Today, we have baby platelets @ 46k!

Ok, so my lips were pale when I woke up, so I knew I'd need to be topped off with red blood ~ and I got two units of divinely donated blood. Thank you, whoever you are, that person who donated blood to a stranger. Heavy on the strange. But good news is: all my other cell levels are coming up to normal, meaning The Trinity (what I call the white blood cells, red blood cells and platelets) are beginning to work together again. And that's a big hallelujah for anyone.

Sorry for this late VERY GOOD update, but with donated blood, two units take a couple of hours to transfuse plus the benadryl used to keep any allergic reaction from happening knocks me out. So I came home and fell asleep. In heaven. Man. I know. I'm surprised yet not surprised at the same time. I'm tellin' ya ~ proper meds boosted with proper nutrition and rest are key to a quick recovery, plus the Big Daddy G upstairs is really the one responsible for the whole design of life and renewal in the first place.

All I can think of is how lucky I am to have this treatment begin to work, amazed that someone's job was to figure out how to make someone's elses broken bone marrow reboot and begin producing platelets with a horse serum named ATGam and the proper mix of cyclosporine and steroids to keep the cells from rejecting it all.

And, I have never lost sight of how lucky I am to have access to the University Medical Center Cancer Clinic (Hematology) and the UMC Bone Marrow Unit here in Jackson with the exceptional care of the doctors (Dr. Joe C. Files) and the entire staff at the clinic and the bone marrow unit. You have no idea how they not only run those facilities like clockwork, but they are all such wonderful people with a laughter and character from deep within, one which I have never experienced anywhere else.

Just like the people reading this, too. If you are reading this, then you are one of a kind. Just the kind I am thankful for, everyday.

On December 8, 2006, I packed my bag for a one night stay here in Jackson, kissed the dog and cat goodbye, but never got to go back to Memphis after the doctor read my counts and began this unexpected trip of mine. But today, I don't have another doctor's appointment until 2/27 ~ not two days from now, as usual, but two weeks from now. So now, it's time for me to travel in the next few days, with baby platelets growing, driving 210 miles north again to see what I had to leave undone the last 67 days in Memphis.

I have some vacuuming to do, I can feel it! And the story of this trip has just begun.


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

"...I Got Music, Who Could Ask for Anything Mo-o-o-re..."

Oh yeah, platelets would be nice, I keep forgetting.

For those playing the platelet-growing pool,

Last stats:
Last Friday, I had 29k, 2k more than 4 days before at 27k.

Tomorrow, feeling 56k but I guess 36k, and even though my hematocrit was low last time (which should equal unit of blood this time), think I will walk without receiving a divinely donated unit of blood.

My mom, the mathwhiz-cheater, says, "Let's see, last time, you made 500 a day, so I'd guess 2k more, making it 31k. But if it's still at 29k, don't be surprised. I mean, it fluctuates, y'know..."

I appreciate that. She has taken excellent care of me, have I mentioned that lately? Emotionally, that would be the "Don't Get Your Hopes Up" part of the show. Me? Besides rhythm, I got "High Apple Pie in the Sky Hopes" so I keep my guess. I'm just annoying like that, and many, many, many other ways.

Good timing: Frasier's on, my favorite episode, singing "...hippity-hoppity boppity bo, somethin' and somethin' and panty hose, and Buttons and Bows!" Location joke, yeah, but hopefully you know which episode I mean. Ooo, attention span gone...sparkly...pink...prettyyyy....

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

See you tomorrow.

ps: Yes, it is fun being the daughter of a research chemist. It certainly helps to have that blood running through me, literally and figuratively. Experi-mental, heavy on that last part.

The proof in the cookieduster.

Sure, cyclosporine grows hair. I know that now. My whoops-now-bleached-white Colonel Sanders moustache will tell you that. So, you're asking, does it grow platelets? Well, it certainly must help.

In the past 4 days, my platelet count went from 27K (holding exactly from its last count 3 days before) and is now rising -- to 29k. Yesss.

Some say, "You built 2k!" but I say, "No, baby, I built them all ~ 29K of 'em." Why? Because a normal body produces 200k-400k, recycling them all in 7-10 days. So, that's my opinion, and I think I am on my way to making baby platelets. Feel it in m'bones. Now, how long til normal range. low end being 140k. Don't know how long that will take (let's ask mom and her cheating calculator ways), but I'm shooting for what I had and took for granted for years: 315k.

Thanks to you, God, and to the universal healing powers of good. No, really. Like any regenerative object on this regenerative planet, the human body is a divine design, whichever god you believe in. This is not the end of my healing ~ they said, "Don't worry if it goes down again, don't get discouraged, it's normal, that's expected." But let's celebrate today, want to? Me, too.

And I'll never forget: None of this could've happened without the divinely donated platelets from the silent angels known as blood and platelet donors. Honestly, I would probably be dead right now without donated blood and platelets I've gotten. As I received them, I treated every one of them with care ~ I babied them with the hour-by-hour medication regimen, rested in periods of thanks and meditation and drooly naps, increased exercise levels daily (shuffling around the backyard filling up birdfeeders is good for you), researched and applied better nutrition (easy when your mom makes excellent salads), and resisted sugars and the rich, blood-red Cabernet Sauvignon. And, have resisted the occasional 5 mg of diazepam in its place. Whoo-hoo! (Hey, it was prescribed for the dog's bad back, but it takes the edge off. Aw, we got it at Walgreens, it's kosher.) And if I need to get more, I will do the same thing, with respect.

Anyway, my hematocrit level was low, so they say I may need blood next time, but that's fine. Basically, I'm ready to donate something back to them ~ to the cause no one thinks about until it hits them ~ (whether it's a truck or a freak blood disorder) ~ I have to give back by raising awareness for blood donation and its donors. Selfless acts in silence that truly save lives. How can I thank these people?

Hey, that was a pretty good line in blue, for starters.

And, if you are reading this, thank you for your kindness, messages and support. Honestly, you are the ones that make the world better everyday.

And finally, don't forget to hug an research chemist or scientist today. Trust me, the pigeon hawk roosting on my upper lip is worth it. As my dad would say, "Better living through chemistry." And he should know, being the research chemist who lived with Chronic Lymphocytic Leukemia for 24 years, which is almost unheard of.

So, Airborne, Daddy...this is your daughter, labmonkie...excuse the walrus beached under my nose...but we made 2,000 platelets this week.

Back to the doctor tomorrow to see:

Is she making platelets, or not?

Last time:
platelet count was 27k, steady/holding over 3 days, which is, like, the longest transfusion hold yet, like...in 2 months. So's I think I made some platelets, Demi, like for real, no kiddin'...

(Listen to me, talkin' all like Ashton Kutcher or something...which reminds me of a story...)

My guess: I say 30k, but feel like a 56k
Mo's guess: "What'd you guess? 30k. Well okay, then, go on with yer bad self then."

Which, for those of you who don't *speak the local juke jive of olde*, that means, "Well, if you say so, sounds good to me, I'm going to bed." So I *hollered back*, "Hey...HEY ol' lady, where's your calculator now, huh, where's your cheatin' calculator NOW, lady?!" to her white-cottoned backside as she scuffled off to bed, scratching something more twitchy than itchy, looking for her cat. We're both like totally over the guessing game, like yeahman. Luckily, me and Demi are into Scientology. I mean kalabbah. No wait...the one with the red string...felafel...

This is not my fault I am speaking in Ashton Kutcher. I found this draft never posted from 12/26/06 to explain everything, just everything. Please enjoy.

"I also got a Sylvia Browne book on how to get in touch with your spirit guide. I know. Now that all of you have stopped rolling your eyes and snorting, that's why I got the book to begin with. You know me, always up for experiments. Plus, she makes sense. Oh yeah, I'm psychic, no doubt. In fact, I knew I'd say that. See?? Unexplainable. No, really. It's not marketable for me, but it's nice and annoying to everyone sometimes. I don't talk to dead people though. Scratch the line there. Hell, I barely talk to living ones.

"Anyway. Here's the best part though: I got to the end of the book, where I have to visualize in order to see my spirit guide. I'm not good at visualization. Or sitting still. So you can do these exercises before you sleep. So I tried one exercise last night, and the next thing you know, I found out that, yes, he came to me -- my spirit guide was tall and pale with dark hair and dark eyes and that nose, that face...that goofy smile...that guy from "The 70s Show". Yes, everyone, Ashton Kutcher is my spirit guide. I know. Only he wants me to call him Carlos though. What is up with me and the Ashton Kutcher dreams? This is the third one. I don't care back-or-forth about him. Why couldn't it have been Johnny Depp or Matt Dillon? Why?

"Angry Czeck, you stop that surly laughter, or I shall rise up mightily and smash your bones into a fine powdery dust, leaving your spirit guide, Paul Lynde, cleft in twain!! Or is it Rip Taylor..."


Reality might be transfusion time, but I really doubt it.

Blood for me, Angry Czeck, not you, or Ashton Kutcher. Unless you're cruisin' for an extreme bruisin' yourself. (Ashton, stop making me say stupid things.) Hey, Surly Czeck, you need to update your blog. What's up with you? You sick or something?

I was wrong. It surprised me. But not really.

Before I left for the doctor yesterday, I just felt like it wouldn't surprise me if my platelet count hadn't fallen, or was actually higher. I can just tell. And that's not the construction-worker socks and bleached moustache talkin'...

My last platelet count was 27k and by today, based on averages so far, should be 11k (transfusion time). This morning, I heaved 3 bags of garbage to the curb, filled up birdfeeders, took out the recycling, and then thought, "It will be the exact same, or 26k, I can tell." One of my beautiful leg bruises that go along this aplastic anemia thing had healed almost overnight, it's now just a crescent moon shape. Kinda pretty if you ask me, looks like a tattoo. Makes me want to jump on my chopper and ride into the sunset. And shoot a lizard off a rock and leave fire trails behind me like that bounty hunter on "Raising Arizona", Leonard Smalls.

Because today, my platelet count was holding, at 27K, same as 3 days ago.

So in my opinion, I not only held the donated platelets from over a week ago but also think I made some platelets because normal bodies recycle/renew their own 150-400k averages every 7-10 days. They didn't tell me that, but what else can you think?

Donuts...Ben & Jerry's Cherry Garcia...fried chicken...pizza...(steroids talkin')...

We'll see what happens when I go back in Friday.

There will either be more, or I'll be down to a quart-low and need a transfusion. Somehow, I have this feeling I will be up a little with a low count in the 30s, and need no transfusion.

But that is days away, and I have to get out into The Yarden. (Yes, yet another blog...have to do something with my hands, don't I, besides donuts...Ben & Jerry's Cherry Garcia...fried chicken...pizza...)

PS: Katherine, I love you, girlie, and am calling you soon -- excuse: my mom has kept my butt in the road with our Elvis-like TCB (Taking Care of Business) List, and man, that list keeps growing. Need some sleep --it heals bruises and that's the best excuse ever.

Late Update: My Mom's a cheater, and I'm lazy.

Ok, so last doctor's visit, I guessed 20k. But I was thinking 26. After they drew the blood and we sat back with the doctor and his results, my mother turned to me and said "26k", and I said "20...ish." The doctor smiled and said, "27k. " I smiled back with the chipmunkie prednisone face and said, "We're makin' a game out of it, ya see. Numbers." She said, "No, it was easy, I just did math."

Wait, wait wait. I went on gut feelings, she said she *did the math*, based on average loss-rate per day.

So in my opinion, she counted cards and cheated. But I didn't speak my gut, losing by 6k. Still not building my own platelets yet, but at least I'm not a cheater-r-r-r.

Lazy, maybe. No, actually, the opposite -- just made myself really busy the past three days. Started a new blog called "The Yarden" which will grow roses here while I grow platelets here in Jackson with my math-whiz mom.

Back to doctor tomorrow:

My guess: If it's fallen, I say 11k, but I feel like a 32k.
Her guess: She says 17k.
Reality should be 11k, tranfusion time.

She said, "Make me a liar, Bethany!" I said, "Fine, you're already a cheater!"

Gamblers, place your bets, Off to the doctor today, I put my chip on the 20.

Up early for the day so posting now. Besides "cyclosporine makes your socks smell like a workman's boot", the only other thing I have learned in the past couple of days is that doubling cycloporine caplets to therapuetic levels combined with my normal amount of a.m. steroids takes me back to shades of the good ol' hospital stay. Yes, I remember like it was December 31st, because it was, when they'd finish up my 10-hour bag treatment for the night, shoot my PICC Line full of steroids, and I'd quiver and bawl like a baby. I figured, "Great, I'm going to be like this for the rest of my life." But no, thank you, God, it's not forever - it just feels like it.

My only mistake was calling the pharmacy. Knowing your enemy is half the battle, so yesterday when I felt the nerves coming on, I came to and made myself *have a lie down* and that seemed to work, so naps are back in the mix for the experiment here. Definitely. This data was compiled directly after I noticed as I talked to the pharmacist to check whether the insurance company had approved my main, doubled prescription as "overridden", the woman on the other line, God love her, couldn't understand English well. Ok, I'm being nice -- hardly at all. And it's not because of the cyclosporine/new man odor, but I always imagine myself in someone else's shoes -- I'd hate to have her job and try to understand some of the people around here. And trust me, my drawl is back yes, but for business calls, I speak "Customer Service Representative" style. Years of rushed, cheap voicework for the last job I had gave me lots of practice, and heartburn.

If you ever want to hear one, I bet there is still one in an online sample somewhere. I'll admit, one does sound really HickVegas drawly-y'all, but I was tired that day, and the woman who ran the company I worked for was being a total jerk. More than usual. Which is why I bet I can't make platelets now. Stress-induced *no kill* suppressed rage, daily. Man. She has near-zero idea how to properly run a business over 5 people. And that's not just me talkin', that's a guy from a huge agency talkin', too. Hey, what can you do past coping -- called her "Miss Management"...among other things...

Ooooo, looks like my cyclosporine/steroid cocktail is kicking in early today! Sweet! Who needs a good smashin'!! CYCLO-ROID, SMASH!!

See? I hate to sound negative. I'm not though -- it's all true.

Anyway, re-adjusting attitude now based on new data, check, and making peace and coffee early on in the day. Gotta wake up my mama and get her going with the *secretly switched decaf*, back later -- enjoy the day!