My doctor's not only good, he's funny.

I wasn't feeling so good when I went in today, felt kind of beaten up from the inside out. So I figured my numbers might be down. "Lighten up, Francis", was all I thought.

The doctor came in, opened my files and gasped. "What" is all I could say. He looked at me over his glasses and said, "Those are some beautiful counts, so whatever you're doing, keep doing it." I laughed and said, "Well, red wine it is then!" and then I slapped his arm and told him NOT to do EVER do that to me again.

Thanks, folks, don't forget to tip your waitresses, and drive safely.


today's platelet count: 275k
long-term goal: 315k

Happy Anniversary to me. With platelets.

You still there? Me, too.

I have really great excuses for not posting here more in the past almost 3 months. No, really.

One of the best excuses is that I feel so much better and stronger that I honestly stay gone and away from computers for days and weeks at a time doing anything I can possibly think of -- anything that involves being outside, being somewhere else, or just being.

But I wanted to make sure that I posted that thought for anyone who may have landed here looking for something positive to think about before, during, and after treatment for aplastic anemia: You will feel better. I know it's hard for you to believe, and I won't say that ATGam is a cakewalk because it's not. It's exactly the opposite of a cakewalk -- which isn't a "cookierun" but for now, hang with me until I think of what is the opposite of cakewalk because I am sorely rusty these days with the recent adjustments in my swilly Rx cocktail which has a real dumbing effect on my expression of words and a linear line of thoughts, and trying to focus some days is about as easy as counting thunder-struck baby chicks scurrying around the barnyard...

...

What was my point?...

Oh yeah, anyway I've learned that the ATGam is one stage, but the meds and treatment after ATGam is more than just physically challenging; it's "down the road a'ways, take a right and a left by the crooked tree, and another right that's more of a veer just past the henhouse" mentally challenging. Plus as with any recovery, it's a full-time job that you don't get paid for, not with green money to say the very least.

But in the end, the payoff is sweet. So remember that and forget the babble.

But I just wanted to let you know with my rusty words what I was up to and what you should plan on being up to one day, a year of so later, after being on your journey similar -- especially if its like mine (the new black this season that I'm convinced you'll be hearing a lot more about in the next few years), the ITP variety which results in aplastic anemia.

My point? Hold on. I think I have one. So please try to tell that to anyone who has had to listen to my endless talking-in-hyper-hyphenated-grasping-at-names-and-nouns-useless-finger-snapping-and-hand-gesturing mobius phone conversations full of jubilation, frustration, and fears. Yes, it is a thrill ride.

Hey. Is that the opposite of cakewalk? Victory!

Anyway: Point, please -- In a few days, it'll be one of several new anniversaries for me -- the year after I found out on a routine yearly exam that *something was wrong* with my bloodwork. That means a year later, I'm silent, but I'm still here. Some days I wonder why, but most days, I just plainly thank God and then plan on eating some sort of fancy cake.

One track mind. Cake cake cake.

I think the exact date was November 14th, 2006, but I'll have to check my PDA (which didn't fare as well this past year and is dead) for sure because it's an anniversary I plan on celebrating for the rest of my life, I suppose. Along with a few other important mile markers I've acquired this past year that I'm honored to celebrate, I believe everything good can and should revolve around cake.

Happy Anniversary to me and one day to you, too.

xoxo - bny


For those still keeping score, I'm still shooting for the long-term goal of 315k platelets:
Since my last post, I've had two doctor's visits, and the results were that my platelets were holding near 225 as an average. They dipped the last time, but I think that's only because I've stretched myself to the limits the past 3 months with physical things like the new dog-sitting job, listing/selling/moving a house, and other complete blurs like that. In retrospect, I haven't posted because I was afraid of riding a bike on a tightrope and looking down -- was afraid I'd fall if I stopped in the middle of it all. But, here I am again to tell you all this as a good thing. A year ago, I could hardly walk to the car from my job.

Oh yes, add to the list another anniversary I celebrated with cake: Friday, October 13th, 2006 -- the day I got my life tossed back to me from the Dark Side. Again: "Thank you, God. I saved You a corner piece of the cake."

Anyway, back to counting chicks and the Update notes: Being the labmonkie that I am, I've decided to add in a B12 injection every month for the past 4 months. Now. You might want to try this if you're running a bit macro-ish anemic. But. Now. I'm not saying you should do anything like that without your doctor's permission like me, but hey -- I'm a rebel, baby. And sometimes I pay the price for that. But my hematocrit levels have been coming up and improving slowly but surely, which means I'm getting less anemic every month. So all I can say is "why not", and it "feels like a hawaiian vacation" as my mother says. One shot a month isn't a thing to endure, and I'd add "human pin-cushion " to my curriculum vitae anyday as long as the right numbers keep coming up.

Man. I ramble.

Well. Enjoy the silence for now. But after all the dog-walking, house-moving, kitchen-repainting is done, I will post so much, you'll have a warrant out for my arrest. Yes, again, Mom.

Yeah, I kid.

Next doctor's appointment is November 20th. I'll guess that my platelets will be up to 230-ish?

A Quickie Post

Wait, wasn't that the name of that chick on "Night Court"?

No. It's me, aced my CBC with 228K platelets and the grace of God and medical advances in horse serum and mustache-growing prescription medications.

And that is the sound of my bone marrow making platelets and even more red blood cells.

"Your aspirate shows that your bone marrow is getting better, but it's still not normal." What about me is normal anyway, so I'll take it.

To be continued, September 14th.

Hang in there with pie.

I forgot to note last time: For anyone keeping score still, last time at the doctor's office, I had 222k platelets up from 202k. That's pretty good for 3 weeks' work. And my red blood cells are starting to come up. I think my marrow is producing more cells instead of just bigger cells as it was doing the past few months. It's been fascinating for me to learn things, and how the body was designed to compensate and renew itself if it couldn't repair itself completely.

Sometimes I'm keeping score, but mostly, I'm not, I gotta say. I'm just readjusting to a life that's worth living for so many incredible reasons. I think it's amazing what has happened to me since last November when I was first diagnosed with this ITP/aplastic anemia thing. It's too much to think about at once. I don't feel like getting the bends. And I'm still not far enough away to get a good look at it because I'm out of the woods, but still too close to the trees to see the forest.

Are those cliches or analogies? I don't know. But it's a good way to describe it all.

Lots of people have asked me, "What do you do now? Are you cured?" Well, I hope so. Seems this type of blood disorder was very rare, and all I can do it watch it from now on for the rest of my life with hopefully only bi-annual or annual checkups. I still wonder where the weekly mysterious bruises come from. But then I remember, I'm still healing up. But nicely.

While I am still on that cookieduster-growing Cyclosporine, the dosage has been steadily reduced. Which is excellent news. My doctor promised me that next time, I will probably get to reduce it even further. The Colonel Sander's mustache has gone away, but the Aztec bone-picker nails seem to be holding in there nicely. And when I brush my hair now, I can feel it's thickened and not one strand is left behind in my brush.

Which to me is all weird. My mom said, "One day, you will look back on this and realize how bad you felt and how sick you really were." She's right. She's always right.

So I guess that is my advice to you if you have Googled here, wondering about some strange and rare blood disorder you may have contracted. My mother's always right. "Fifteen years ago, you would have been dead from this. Thank your Dear Lord they have treatments to try now." And "Yeah. those pants do make your butt look big, but who cares? Here. Have a nice piece of pie."

Bone Marr...OW!!

Yes, I finally got that long-awaited third bone marrow aspirate done today. Corkscrewed a big chunk right out of Ye Olde Buttbone. But when it comes back from testing, I expect nothing but good news.

Still good news -- bone marrow is working overtime making platelets (up from 185 to 202), the red blood cells counts are coming up, too (I think the shot of B12 in the arm helped that microcytic jive), and I get to reduce my beard-growin' cyclosporine. See? Again, what can I say more than "better living through chemistry" and "Kiss a researcher or scientist today"...

Whew, this aplastic anemia job is harder than I thought. Sure, the pay is eh, not so great, but the benefits are out-the-roof.

Next doctor's appointment in 3 weeks. Expect miracles.

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.