Because I will never forget that I was down to 4k once.

Went for the routine 6-week checkup, and things are still going progressively great. My platelet count is holding at that long-term goal I had set based on my original, pre-ITP average of about 315k -- they numbers are now holding steadily between 278k and 285k, which has now become a miraculous thing to me.

My doctor took me off the Cyclosporine completely which is a huge milestone in this entire healing process, and it's a huge relief to me for so many reasons. Cyclosporine is the drug that helped my rebooted bone marrow keep producing and protecting my new bone marrow cells; that's the way I understand it.

But like everything in life, it had side effects. It's an immuno-suppressant which just means it weakens the immune system, making the patient more susceptible to infections and any common passing virus or cold, which is how I got into this fix in the first place. Luckily, I didn't stay sick with a constant cold or have any type if infection. Thank you, God. But it left me with a deeper compassion for anyone who has to take this type of drug long-term or in bigger doses. Although anything that happened to me, my mind automatically switched to the thought of someone who had worse or bigger doses and drugs to deal with. Unless you have an overblown, unnecessary ego and have take trapeze lessons to fill the void in your life, that's a key thought that can help just about anybody through a day.

Yes, that last sentence is based on someone I have known, if you can believe that. Ohhhhhhhhhmmm...stress is bad for the immune system. It weakens it. Ask me how I know.....ohhhhhhmmmmm....

The other side effects that really bothered me, I had to learn to cope with in a zen-like balancing act -- the constant gnawing in my stomach got crackers, lots of peanut butter crackers; the burning of taking the liquid-versus-powdered caplets which is all that needs to be said about that got whatever it wanted which was usually a good night's sleep; the brain-drain effect made me lose my concentration and my car keys at least a zillion times, more than the usual average; and the depressing feeling it causes was and still is the hardest thing to deal with daily, trying to sort out what is chemical and what is emotional from some of the other things swirling around and down in my life right now; but I wrote a note to myself and pinned it to the wall, saying "It's not forever, it just feels like it" which had coincidentally become a recurring mantra of mine over the past 10 years.

Sometimes I stop just long enough to get a sense of how much things have changed in my own life in the past couple of years, on top of getting this crazy ITP thing. I'm still not ready to examine it fully and talk about a lot of it which I know for a fact weakened my system so badly that my body's defenses went haywire. But when I do talk about it someday soon, I promise it will be beneficial to you or anyone who's reading this for information or hopefully inspiration.

Speaking of that...

Good or bad, life hasn't slowed down enough yet for me to impart everything I've learned by now, but the only thing I can comment on briefly is that I have had a bittersweet taste of being a patient of patience.

Being sick for more than two weeks at a time is hugely different than anything I have dealt with personally, so far. Healing is a full-time job with lousy pay but great benefits. Living with illness one month, six months, twelve months, eighteen months -- I'm coming up on my nineteenth month, and I'll be honest about if it helps anyone else reading this: most days, I wake up scared. I'm tired. I'm pissed off. I'm sad. I'm confused. Yesterday, I stopped to think about things, and I almost threw in the towel on it all. But that's all part of the process. I know this now. It's the *screw it* step that gives you a boost when you need it, when you ar not as low as you feel worn down to be.

So, screw it: I'm confident with the progress and results and eternally hopeful, and I'm not giving up this close to what I like to call The End. Like my father always said with a thumbs up to my mother after his many treatments, his many operations, "Never give up, never say die."

Hoping to not jinx myself, I'm donating the rest of my leftover unused meds back to the hematology clinic since this drug is so expensive but such a necessity. Even though it has its side effects, there is no other way to beat it unless you fight it with the big guns, and I don't want someone who can't afford it (which is just about everyone) to go without this drug.

While my mother was talking to everyone at the clinic exchanging laughs and smiles, after my doctor had looked over all my blood counts and levels and gave me the good report, he called me aside and told me just as a reality check, "This could come back. I just have to tell you that. That it could come back." Then he looked down to the notes he was finishing up on my records. I looked at him long enough to process my emotions, which I have gotten seriously efficient at doing, until he looked back at me, and I looked to see what he was thinking behind his eyes. I asked, "Is this genetic?' and he shook his head no. "Can I ever donate blood again?" He shook his head no. I searched for any information I could get from his expertise to prevent this from ever coming back. "I think it was a combination of things, don't you? I mean, what can I do to not get this again, what did I do, what can I do to prevent it?" And he just took a breath and said, "It was just bad luck."

That's the first time I'd been officially diagnosed with bad luck, but thank God, they do make pills for that. It was actually a relief. And a reaffirmation.

Good. I think he meant, yes it could relapse, but really, let's see how much of my luck is up to me.

Double good. Then I will not get this again, I can almost assure you. I am not going back to the stressful life I knee-walked through like a zombie for the past few years. That was not me, and the irony of that is that it was killing me, and it wasn't even my life that it was taking. I won't get this again, and I will prove it.

Nope, "Never give up, never say die." Not until I'm good and ready. And if I do get this again, then I am just lucky and mad enough to be ready.



Next update: May 2nd

Sometimes less is better.

Did I seriously forget to post last 6-week's progress notes? Apparently, I did. But "no news" really is good news when I do forget like that.

(I used to think the saying went "no news is good news" which sounded way too negative, as it would be if it were true, and confused me profusely. But confusing me has never been really hard to do.)

Should I seriously have posted this post on Friday, right after my visit to the doctor? Yes, I should've. And I'd like to thank my aunt for reminding me to hop to these things. I'm so easily distracted. And now that it's turning back into spring outside? I'll be a goner, but in a good way.

So, here's my update: This doctor's visit was good, again, thank you Big Daddy G in the Sky. "How're you feeling," he asked me. "Good. Well. Very well, actually," I said. "That's because you almost are," he noted.

(The doctor said all this, that is. Maybe Big Daddy G did, too.)

My CBC showed that my platelet count went down from from last 6-week visit ~ from 325k to 291k ~ but that is good news because now, less is better, less is getting more normal ~ it's within the normal range of 140k to about 450k. Last year at this time, I was getting transfusions and raving about my PICC line ~ which I still consider my Valentine this year again, and next year too, for good luck.

At some point, I'll make myself read things that I wrote down here a year ago, to compare. But for now, I'm fighting the urge to slow down before I hit the finish line. And I may now remember anything from running track in junior high, but I do remember, "When you see the finish line, don't slow down -- run harder."

My long-term goal is to keep it at my magic number of around 315k -- so I'm going to try harder with the rest, the nutrition, the exercise, and the *less stress* bits to see if it makes a difference. I'm a betting girl. So I bet it will.

And on February 26, I have my annual doctor's exam which (except for the embarrassing paper gown) is going to be extra-sweet because I'll finally get to thank my doctor for finding out that my platelets were low to begin with. Remember that doctor? She's the one I haven't talked to in over a year, and haven't talked much about yet, but she's the one who began the *saving my life* part with one, simple blood test.

Two if you count the recount to make sure the first one was accurate.

I know. One simple blood test, once a year. I owe a lot of people a lot more than just gratitude. But thankfully, now I've got the rest of my life to pay it back somehow.

Starting with this: if you are reading this, you need to get a CBC (that simple blood test) once a year. There is not one good reason you shouldn't, and about 315k reasons why you should.

So, see you after I visit her on the 26th, and then see you after my next "6 weeks." With about 315k or so of platelets? Twenty bucks says "you bet."

Happy Anniversary to me again!

Last year on this day, I met my Valentine, the PICC line, and went into the hospital for 4 bags of ATGam, 12 days of treatment, 100's of thousands of medical bill dollars, and an unmeasurable amount of steroids and other hi-powered prescription buddies.

So now 365 days later, I still would like to thank the Academy -- for my mother and for all the unbelievable nurses and doctors who took care of me during that time, and all the people who've come here and wished me well, donated blood, or just stood by me while I went through it all.

It seems like a lifetime ago. In a way, I guess it was. Really, I was supposed to be dead now. That's one thing I have realized, finally. Today, right now, if it weren't for all those people and all those doctors and all that treatment and all the research and development within the past 15 years, short of a miracle, I'm supposed to be dead right now. Sure, we've all gotta go sometime. But my time was moving up rapidly without my consent, and my bones couldn't save me anymore.

I've spent a lot of time lately thinking about more than just a lot of things that I couldn't think about at the time when all this was going on. And that makes me cry at times, but mostly, I'm full of hope and relief, and I shake my head and smile up to the sky a lot.

Also, my new Valentine this year: Ambien. Oh how I love you so, even if you are the generic known as Zolpidem.

And here I am, back in Jackson for my 6 weeks checkup and blood work.

long-term goal: 315k

Today, my long-term goal of 315k platelets was bypassed as I came in at 320k. My red blood cells are macrocyctic still (which just means that they are larger than normal to compensate for what's been going on), but the rest of the numbers were low-normal good. It leaves me speechless again and also leaves me to ask myself, "Now what?" So again, I shake my head and smile up to the sky a lot. I say, "Thank you, God." and "Daddy, I still say you could've been more subtle at getting my attention." But probably not. I can be very headstrong at times. I say "headstrong", but I bet it's more "self-inflicted denseness." Just doesn't sound as good.

I know one thing. I'll never be able to thank everyone enough, and I'll never see things the same way I did before this. So thank you again, God. That's one thing I have always been looking for. and always will.

As far as treatment goes, now I'll begin to taper off the cyclosporin over the next several months. Which is really good news for my brain. It's been speechless lately itself.

I'll be back in 6 weeks, expecting to report in with nothing but progress, senseless and miraculous, - but wait, now that I'm thinking, maybe I'll make more sense of it with a new direction or two.

Have a very, very Happy New Year. I promise it will be a good one.


ps: Sissy, I hope you are feeling better. Let us know and hang in there, baby. Think "mashed potatoes"...love you and get some rest.

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."