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
Friday, March 21, 2008
Monday, February 11, 2008
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."
(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."
Friday, December 28, 2007
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.
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.
Tuesday, November 20, 2007
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
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
Saturday, November 10, 2007
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?
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?
Wednesday, August 15, 2007
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.
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.
Wednesday, August 1, 2007
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."
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."
Tuesday, July 24, 2007
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.
Tuesday, July 3, 2007
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.
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.
Monday, June 18, 2007
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.
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.
Tuesday, June 12, 2007
I'm getting good at this.
Not the "posting regularly" part, but the "making platelets" gig.
Why do I have to explain my jokes? I blame Cyclosporine -- not only for the gorilla arms and the cookie-duster but also for the flatness. Or redundancy. Or over-explanation? Or total awareness of my over-explanation and the inability to edit myself any better than I ever did...?
See? Who Cares and What's New...
Anyway, the best excuse yet for not posting more: there's not much but consistency to report.
Good!
I just go in for check-ups every three weeks for now. Between doctor's visits, I've been making and stock-piling even more beaded, sculpted things to sell online eventually, already selling books for divinely-donated-platelets money. Or even better, for fun.
Except for the daily, earth-shattering fact taken for granted that I am making all of my own Trinity (white blood cells, red blood cells, and most important platelets), there's nothing more serious to report except the persistent anemia.
Well, that, and my eye-watering gas oven won't light up for some reason, and the drains in the bathroom have gotten just clogged enough to be really irritating. But other than that, there's nothing but literal and figurative blue skies.
Today's doctor's appointment still showed that I have a lower red blood cell count than normal which is okay as long as I am still making platelets. Which by the grace of God and Cyclosporine, I am. My platelet counts are steady and growing slowly (which is good) at 186k.
My long-term goal is to get back to 315k, but that's just to show off.
For now, my new experimentations will be turning toward increasing the absorption of my iron. So if you know anything about that subject, I'd love to hear what you've got. Currently I take 325mg three times a day and added Calcium Citrate. Apparently, taking calcium supplements along with iron supposedly helps you absorb more iron. I've also read that white wine increases the absorption of iron. Good enough for me!
Also, my B12 levels were low. Bumping that level up just might help to sped away this on-going anemia. Even though I've never had the pleasure of taking a Hawaiian vacation, my mom says that's what a shot of B12 feel like. And just one shot into it, I do feel better but just a little ripped off without the sandy, warm beaches of Maui.
Next appointment is Tuesday, July 3rd.
Until then, I will update more, but hopefully it won't be anything more than, "Crud. I just broke my last pair of decent glasses." Which I did the other week already.
Still haven't gotten that follow-up bone-marrow aspiration corkscrewed out of my buttbone yet, but I'm not going to think about that until it happens. I'm off to buy those sparklers and firecrackers for the Fourth. It's going to be a good one.
Why do I have to explain my jokes? I blame Cyclosporine -- not only for the gorilla arms and the cookie-duster but also for the flatness. Or redundancy. Or over-explanation? Or total awareness of my over-explanation and the inability to edit myself any better than I ever did...?
See? Who Cares and What's New...
Anyway, the best excuse yet for not posting more: there's not much but consistency to report.
Good!
I just go in for check-ups every three weeks for now. Between doctor's visits, I've been making and stock-piling even more beaded, sculpted things to sell online eventually, already selling books for divinely-donated-platelets money. Or even better, for fun.
Except for the daily, earth-shattering fact taken for granted that I am making all of my own Trinity (white blood cells, red blood cells, and most important platelets), there's nothing more serious to report except the persistent anemia.
Well, that, and my eye-watering gas oven won't light up for some reason, and the drains in the bathroom have gotten just clogged enough to be really irritating. But other than that, there's nothing but literal and figurative blue skies.
Today's doctor's appointment still showed that I have a lower red blood cell count than normal which is okay as long as I am still making platelets. Which by the grace of God and Cyclosporine, I am. My platelet counts are steady and growing slowly (which is good) at 186k.
My long-term goal is to get back to 315k, but that's just to show off.
For now, my new experimentations will be turning toward increasing the absorption of my iron. So if you know anything about that subject, I'd love to hear what you've got. Currently I take 325mg three times a day and added Calcium Citrate. Apparently, taking calcium supplements along with iron supposedly helps you absorb more iron. I've also read that white wine increases the absorption of iron. Good enough for me!
Also, my B12 levels were low. Bumping that level up just might help to sped away this on-going anemia. Even though I've never had the pleasure of taking a Hawaiian vacation, my mom says that's what a shot of B12 feel like. And just one shot into it, I do feel better but just a little ripped off without the sandy, warm beaches of Maui.
Next appointment is Tuesday, July 3rd.
Until then, I will update more, but hopefully it won't be anything more than, "Crud. I just broke my last pair of decent glasses." Which I did the other week already.
Still haven't gotten that follow-up bone-marrow aspiration corkscrewed out of my buttbone yet, but I'm not going to think about that until it happens. I'm off to buy those sparklers and firecrackers for the Fourth. It's going to be a good one.
Wednesday, June 6, 2007
"Poof," and she disappeared into a wisp of smoke...
And I mean "poof" in the magical way, and no other.How've I been? No, no. Really, the question is: How've you been instead? I seriously want to know. For one thing, I care. (Thank you for reading all my bappity-bap.) And another thing, I'm tired of thinking about all my stuff, all the time. Not complaining, just squinting up at the sun, drying out on the beach I've washed up on, shaking the wet sand from my unmentionables. Or is it unspeakables?
Aplastic anemia or any other illness is not for the faint of heart, is it?
The only catchy line from "Steel Magnolias" besides "My signature colors are 'Blush' and 'Bashful'," is "That which does not kill you makes you stronger." I think I can say, with room for growth, I could bench-press a lead-covered gorilla right now. More likely, I could levitate him using only my brain.
Last doctor's visit, I had 180k platelets. In other words, "yippee!" Blushing, I made them myself. Whew. So that was about 6 weeks ago. Then 3 weeks later , I held my own and still had 181k. My mom nodded with the doctor, agreeing that 181 was a good number, seems the platelet-production is beginning to plateau. I need more red blood cells though, but I think I can manage that. So as far as I'm concerned, my platelets are working again, my white cells are good, too, so that's good enough for me.
Thank you, God, thank you, Dr. Files, thank you, PICC Line, thank you, University Medical Center Cancer Clinics, thank you, blood donors, thank you, good friends who've had to listen to my ills and complaints, and to those really good friends who suggest prescription medication changes, and thank you, "better living through chemistry" and research. What do I say? "Kiss a scientist today."
Oh yes, and big thanks to my Mom, for simultaneously saving my life and not killing me.
This roadtrip, sponsored by Evian water.Scary. I look up and a month is gone, amusing and amazing myself for days at a time. But I get stuff done. No, really. Working on that 10 Year Old Personal To Do List. Actually, for all the outdoor-time, I do have a really good t-shirt/arm tan to show it. At least on one arm from driving back and forth to Memphis and Jackson in the past weeks, have been without a good internet connection in there, and all those good intentions.
I've spent a lot of time trying to get back to normal which isn't as easy as it looks, ever, is it? But I can tell ya but, I have been running while I have my motivation back. Plus, I figured I needed to get out of my poor mother's hair, even though I do like having pillow fights with her. And I do like threatening to break her arm in three places if she doesn't stop it. She laughs at me for suggesting it, but has this look in her eyes as if I just issued her a physical challenge.
Let's see, what day is it...June 6th? I go back to the doctor on June 12th. The only thing they found that was beginning to go abnormal was my kidney function. This is just a side effect of cyclosporine, hopefully. But just to be sure, my morning dosage was reduced (goodbye, bearded lady career dreams!), and I was ordered to drink an ocean-full of plain water. Have I mentioned I hate plain water? But, I am sure I'd hate dialysis even more, so cheers!
Water is good with lime. Squint at it, and it almost looks fashionable.
Well, I have crossed a lot of major stuff off The (Never-Ending) List:
- spray for ants (not easy, people, they are crafty)
- wax the car (hey, it had to happen)
- excavate/box-up good clothes for donation
- drink water
- declutter, then declutter even more
- call for storage unit prices
- procrastinate in calling for storage unit prices
- sell books and other delightful media
- make stuff
- finish something I put off for, oh, ever
- drink more water
- get the yard spiffed up and weed-free (still working on that)
- declutter even more
- drink more water
- take many baths (but don't drink the water)
- clean and wax (yes, wax) the faux-marble bathroom sinks, tubs and shower
- despite the cottonwood blooming for the fifth time this season, walk
- get together portfolio for freelance projects
- learn GoLive
- finish web site
- do scribbles and scributes
- update blogs
- watched Johnny Depp in "Pirates" movie*
- drink more water
- bathroom break...
It just goes on and on like this, every day, every week. Again, who's complaining? Not me. Because I realized that I don't feel like getting back to the normal I had before I got sick. That was not my kind of normal. Working on my own dreams and visions of those I respect and work with is harder to come by and harder to get cranked up, but more worth it and more normal to me. So, wish me luck and platelets. I wish you the same, which is, in fact a very good sentiment to wish someone.
Next doctor's appointment: June 12th
I predict the platelets will be hovering around 180k still.
Might get a bone marrow corkscrewed out of my buttbone. In a way, I hope so, to get it over with!
Will see if my iron-enriched food selections have paid-off some of my anemia debts.
Been feeling winded, heart-poundy, headachey, flakey-like-a-pastry, but that could just be those dang cottonwood allergies...
I know, I know...I really should move from Memphis. Ok. Anyone want to buy a really cute cottage-style house complete with roses and gardenias, just down from the River's edge? More details to come, if so.
Also, anyone know of a place where I live/write/sculpt/make beady things where the weather never gets anywhere near 90 degrees F, plus there is no cottonwood? Next to water would be nice, but please email me with ideas!
*me: "I saw the new Johnny Depp movie last night."
mom: "Did ya like it?"
me: "Like it? Who cares? I could watch him draw in the dirt with a stick for three hours."
mom: "I could watch him read the phone book for two."
Monday, April 16, 2007
wthybtt?
That stands for "where the hell ya been this time?" meaning "I disappeared again, didn't I?" Well, I blame the weather and this allergy I've developed to the computer. That's me though ~ distracted by shiny objects, sushi, and walking in the park, counting caterpillars for longer than I meant. This has always been the story of my life, all except for the ITP twist, but luckily I like most of the story, really.
That's where I have been with a grand total of 177k platelets since the last time I went to the doctor, last Tuesday. Like I have said before and will say it again squared, "Thank you, Big Daddy G, hiding up in the clouds, and thank you for all the angels you put here on the earth to put up with me and help me through all of this, every day."
What else have I've been doing since last update? Hmm...
~ went to Memphis to check up on the hermit crabs (don't ask)
~ made many things with beads on them
~ had a birthday and some cake
~ watched several hundred different cooking shows
~ realized Ina Garten is a person and not a place
~ watched an acceptable amount of "Fraiser", and an unacceptable amount of "Will & Grace" and "The Golden Girls"
~ got my funny valentine, the PICC Line, taken out which was a very, very sad day until I realized I could take a shower for the first time since December 28, 2006
~ took a very, very long shower
~ thought of approximately 63 good business ideas and shot all but 4 down
~ cut my hair twice, but not in that crazy Bette Davis "Baby Jane" way, but more of just a nice trim to even out the ends which had begun to look moth-eaten, I thought
~ tricked out my mother's computer until I created one fine conflict with three innocent firewalls
~ got a 2-unit blood transfusion that didn't agree with me, but I absolutely appreciated it anyway
~ thought I liked Rachel Ray
~ learned how to whack weeds, becoming a full-fledged "whackerologist" (named so by my mom -- Yes, I know it sounds like a urologist, so just let me dream I'm a doctor, okay?)
~ helped cart home thirteen tons of plants, equipment, cow manure, tomato plants, and other good things for The Yarden
~ helped cart home thirteen more tons of plants, equipment, cow manure, tomato plants, and other good things for The Yarden
~ made guacamole
~ wondered if I'd look weird driving the Weinermobile
~ stared at the Eiffel Tower and wished to go back and stay there
~ took a monkey bath with a book for old times' sake
~ contemplated my eyebrows
~ lost part of my mind after I came to and realized what all has happened in the past 93 days
~ gained perspective With a Little Help from My Friends and felt bad about the hermit crab that died instead
~ got over the crab almost as quickly as I got past Rachel Ray
~ saw something sparkly and painted my nails, both hands Bashful Blush and all 10 toes Tijuana Red
~ made my mother insane, but she totally asked for it because she bothers me every time I go into the bathroom
~ apologized for making my mother insane (even though she bothers me every time I go into the bathroom)
~ went to the farmer's market for okra
~ thought about the word "pumpkin" until it made no sense at all
~ did 99 other things instead of the 3 things that really needed doing
~ took many walks, counted more caterpillars, and waited for the butterflies soon to come
Not exactly exciting but I have to admit, even with the ITP and aplastic anemia, it's much better than anything I was doing exactly this day, exactly last year.
And I'd like to especially thank every one of you for being the sweetest people in the world for keeping up with me through all this and always sending me hugs and your cheer. There's not enough I could say or do for you, but remember to call me when you need a couch moved or need your weeds whacked.
The next time I go to the doctor is next Tuesday where they will take my blood (and I will miss my PICC Line so much that day) and do one final bone marrow to confirm that yes, ATGam, transfusions, cyclosporine and good thoughts and prayers do work.
So how is the beard coming? Fine, thanks. Under control. Am enjoying the eyelashes and nails as the trade-off, so I really am that easy-to-please. And the second-chance at life is an extremely nice benefit, too.
Officially, the physical healing is slow, but it's sure, and that's good. The emotional healing is more than interesting to see everyday and is soon to follow like the little lamb. And now it's time for me to get busy with work* again, and I can't wait.
*See, I told you I lost my mind, didn't I? But this time, it will be opposite and purposeful, new and improved, with lots of love on it, and lots of knowledge on many topics I had no idea I'd ever explore. Actually, that reminds me a lot of how my life was 8 years ago, and that is a very good sign.
xoxo - bny
short-term goal of 100k accomplished 03/13/07
with the help of a few hundred people and God.
almost there to mid-term goal of 200k,
so by 04/24/07, I should be there.
the bone marrow will be a piece of cake
because this time, I know to take
*some blue bippies* before I get it
new short-term goal: admit that, yes, I did use my dad's nose hair trimmer. there. I feel better for having said it, okay? it was for everyone's benefit, not mine.
long-term goal: 315k
That's where I have been with a grand total of 177k platelets since the last time I went to the doctor, last Tuesday. Like I have said before and will say it again squared, "Thank you, Big Daddy G, hiding up in the clouds, and thank you for all the angels you put here on the earth to put up with me and help me through all of this, every day."
What else have I've been doing since last update? Hmm...
~ went to Memphis to check up on the hermit crabs (don't ask)
~ made many things with beads on them
~ had a birthday and some cake
~ watched several hundred different cooking shows
~ realized Ina Garten is a person and not a place
~ watched an acceptable amount of "Fraiser", and an unacceptable amount of "Will & Grace" and "The Golden Girls"
~ got my funny valentine, the PICC Line, taken out which was a very, very sad day until I realized I could take a shower for the first time since December 28, 2006
~ took a very, very long shower
~ thought of approximately 63 good business ideas and shot all but 4 down
~ cut my hair twice, but not in that crazy Bette Davis "Baby Jane" way, but more of just a nice trim to even out the ends which had begun to look moth-eaten, I thought
~ tricked out my mother's computer until I created one fine conflict with three innocent firewalls
~ got a 2-unit blood transfusion that didn't agree with me, but I absolutely appreciated it anyway
~ thought I liked Rachel Ray
~ learned how to whack weeds, becoming a full-fledged "whackerologist" (named so by my mom -- Yes, I know it sounds like a urologist, so just let me dream I'm a doctor, okay?)
~ helped cart home thirteen tons of plants, equipment, cow manure, tomato plants, and other good things for The Yarden
~ helped cart home thirteen more tons of plants, equipment, cow manure, tomato plants, and other good things for The Yarden
~ made guacamole
~ wondered if I'd look weird driving the Weinermobile
~ stared at the Eiffel Tower and wished to go back and stay there
~ took a monkey bath with a book for old times' sake
~ contemplated my eyebrows
~ lost part of my mind after I came to and realized what all has happened in the past 93 days
~ gained perspective With a Little Help from My Friends and felt bad about the hermit crab that died instead
~ got over the crab almost as quickly as I got past Rachel Ray
~ saw something sparkly and painted my nails, both hands Bashful Blush and all 10 toes Tijuana Red
~ made my mother insane, but she totally asked for it because she bothers me every time I go into the bathroom
~ apologized for making my mother insane (even though she bothers me every time I go into the bathroom)
~ went to the farmer's market for okra
~ thought about the word "pumpkin" until it made no sense at all
~ did 99 other things instead of the 3 things that really needed doing
~ took many walks, counted more caterpillars, and waited for the butterflies soon to come
Not exactly exciting but I have to admit, even with the ITP and aplastic anemia, it's much better than anything I was doing exactly this day, exactly last year.
And I'd like to especially thank every one of you for being the sweetest people in the world for keeping up with me through all this and always sending me hugs and your cheer. There's not enough I could say or do for you, but remember to call me when you need a couch moved or need your weeds whacked.
The next time I go to the doctor is next Tuesday where they will take my blood (and I will miss my PICC Line so much that day) and do one final bone marrow to confirm that yes, ATGam, transfusions, cyclosporine and good thoughts and prayers do work.
So how is the beard coming? Fine, thanks. Under control. Am enjoying the eyelashes and nails as the trade-off, so I really am that easy-to-please. And the second-chance at life is an extremely nice benefit, too.
Officially, the physical healing is slow, but it's sure, and that's good. The emotional healing is more than interesting to see everyday and is soon to follow like the little lamb. And now it's time for me to get busy with work* again, and I can't wait.
*See, I told you I lost my mind, didn't I? But this time, it will be opposite and purposeful, new and improved, with lots of love on it, and lots of knowledge on many topics I had no idea I'd ever explore. Actually, that reminds me a lot of how my life was 8 years ago, and that is a very good sign.
xoxo - bny
short-term goal of 100k accomplished 03/13/07
with the help of a few hundred people and God.
almost there to mid-term goal of 200k,
so by 04/24/07, I should be there.
the bone marrow will be a piece of cake
because this time, I know to take
*some blue bippies* before I get it
new short-term goal: admit that, yes, I did use my dad's nose hair trimmer. there. I feel better for having said it, okay? it was for everyone's benefit, not mine.
long-term goal: 315k
Wednesday, March 14, 2007
I need to stop under-estimating things.
"So how do you feel, " the doctor asked. "Oh, I don't know, I feel good, really good, so you tell me," I smiled and shrugged back. I'm really get the hang of this aplastic anemia thing whether I like it or not.
So good news, with yesterday's predictions, I forgot to throw in, "I'm feeling a fit 126k" because in all actuality and despite the missing steroids, I came up at 113k platelets ~ 13k past my short-term goal. Literally winded, but I can figuratively breathe now.
I'd like to thank The Academy, those four extremely expensive bags of invaluable horse serum along with handfuls of pills, all the divinely donated units of blood and platelets from the selfless unsung heroes, Big Daddy G in the Sky and all his angels (you) here on Earth, and leafy green salads with plenty of avocados, and here's a high-five for okra.
Yep, without the steroids, I'm a little winded and slow ~ but that's just the anemia talkin.' I'll get over that and gain some form of energy soon enough ~ hopefully it'll be some type of super-power where I can churn out more beaded things for sale or maybe glow-in-the-dark or something cool like that.
I need a few thousand more white blood cells and red especially. My white cells are hopefully temporarily low because of the immuno-suppressing cyclosporine I take twice daily. And I knew my red cell counts were on the low-side because I can hear my heartbeat in my ears, but that is almost a comforting whooshing sound at times. Well, of all the side effects and symptoms, it is! The doctor decided not to tranfuse me with any units of blood unless my red blood counts fell lower or anything changed in the next two weeks.
So I'll watch that, and get another blood count early next week so I can go to Memphis and do some business. That's the plan anyway, although I have gotten Really Good at "Plans A" going out the window. But that's what "Plans B and C" are for, and that is The Truth.
I brought back my cat, Googie, and he's loving the extra attention and tuna here provided by my mom. My mother's cat is getting used to him even though she wants to rip him open like a drunk frat boy with a bag of chili-cheese corn chips.
Summation:
Two weeks ago, the butt-bone was victorious
with baby platelets @ 69k.
Yesterday, all my troubles seemed so far away
with an army of platelets @ 113k ~
13k over short-term goal of 100k.
At this rate, I'd say by next doctor's visit,
I should fall in the low-normal range of 140k.
But I'm thinking it'll be more likely
halfway to my long-term goal of 315k,
which my math-cheater mom would calculate
is about 157k.
Then I can get back to normal life as I know it, right?
Everyone, either hold on or stand back.
Next time, I hope I don't need it,
but I will gladly accept a unit or two of red blood
for good luck and hopefully farewell,
because it makes me feel like I just had a Mars Bar.
The doctor didn't order the PICC Line out.
Good, please don't anyone tell him any differently
in case he kindly forgot for my benefit.
short-term goal of 100k accomplished 03/13/07
with the help of a few hundred people and God.
new short-term goal: bleach the Neandertal hair growth
like it'll fool anyone, but hey
long-term goal: 315k
So good news, with yesterday's predictions, I forgot to throw in, "I'm feeling a fit 126k" because in all actuality and despite the missing steroids, I came up at 113k platelets ~ 13k past my short-term goal. Literally winded, but I can figuratively breathe now.
I'd like to thank The Academy, those four extremely expensive bags of invaluable horse serum along with handfuls of pills, all the divinely donated units of blood and platelets from the selfless unsung heroes, Big Daddy G in the Sky and all his angels (you) here on Earth, and leafy green salads with plenty of avocados, and here's a high-five for okra.
Yep, without the steroids, I'm a little winded and slow ~ but that's just the anemia talkin.' I'll get over that and gain some form of energy soon enough ~ hopefully it'll be some type of super-power where I can churn out more beaded things for sale or maybe glow-in-the-dark or something cool like that.
I need a few thousand more white blood cells and red especially. My white cells are hopefully temporarily low because of the immuno-suppressing cyclosporine I take twice daily. And I knew my red cell counts were on the low-side because I can hear my heartbeat in my ears, but that is almost a comforting whooshing sound at times. Well, of all the side effects and symptoms, it is! The doctor decided not to tranfuse me with any units of blood unless my red blood counts fell lower or anything changed in the next two weeks.
So I'll watch that, and get another blood count early next week so I can go to Memphis and do some business. That's the plan anyway, although I have gotten Really Good at "Plans A" going out the window. But that's what "Plans B and C" are for, and that is The Truth.
I brought back my cat, Googie, and he's loving the extra attention and tuna here provided by my mom. My mother's cat is getting used to him even though she wants to rip him open like a drunk frat boy with a bag of chili-cheese corn chips.
Summation:
Two weeks ago, the butt-bone was victorious
with baby platelets @ 69k.
Yesterday, all my troubles seemed so far away
with an army of platelets @ 113k ~
13k over short-term goal of 100k.
At this rate, I'd say by next doctor's visit,
I should fall in the low-normal range of 140k.
But I'm thinking it'll be more likely
halfway to my long-term goal of 315k,
which my math-cheater mom would calculate
is about 157k.
Then I can get back to normal life as I know it, right?
Everyone, either hold on or stand back.
Next time, I hope I don't need it,
but I will gladly accept a unit or two of red blood
for good luck and hopefully farewell,
because it makes me feel like I just had a Mars Bar.
The doctor didn't order the PICC Line out.
Good, please don't anyone tell him any differently
in case he kindly forgot for my benefit.
short-term goal of 100k accomplished 03/13/07
with the help of a few hundred people and God.
new short-term goal: bleach the Neandertal hair growth
like it'll fool anyone, but hey
long-term goal: 315k
Monday, March 12, 2007
Where the fork have I been?
"Off to do 1.5 million errands," I said. I meant 2.3 million instead, and I'm still not done.
Your week begins with a rush, but quickly falls into a manageable pace that allows you to methodically plow through your chores. You turn toward the more serious side of life as you reevaluate what you need to do in order to keep the most important things on track. You've had your fun; now it's time to get back to work. Monday, March 12, 2007
Loosely translated, the fun part must be subjective.
Making platelets is good, relieving and addictive, but I wouldn't call it fun -- the knitting of scarves made things manageable while I've been coming off steroids for the past fews days. Maybe that counts as fun. But am I complaining? Nope. I can't have fun until I can get back to work. Good Lord, you take that back ~ I am not high! I don't touch that stuff. I just like to work is all. And, to tidy things up.
There, I said it and feel better for saying it.
Maybe being a Merry Maid is in my near future....hmmmm...
Also, I've just been scribbling down notes of interest and research to myself every day so I will remember not to forget, when I can, between the fun. Again I say "Steroids are the Beast Goddess Who Taketh with One Hand and Crusheth Thy Nuts With the Other." My figurative ones ~ not literal ones. The moustache and beard are throwing you, aren't they? Well I can assure you, it's about the most masculine thing about me besides proud, fightin' Irish attitude. Which mainly explains the tendencies toward scotch, too.
What? You got a problem with that?? Hey, my great-great-grandfather was directly from Ireland, I can say that. Why, if I weren't so tired and in need of a good waxing, you'd be in real trouble, buddy. Don't put down My People. Ooo, now you've gone and made me miss my cross-dressing friend ~ he always inspired me to keep my nails looking as luxurious as I could, which was completely motivating at the same time, and I could almost keep up with his hair but never his shopping for shoes...
My my. It's the 'Roids Leftovers gigressing again. Ignore me. I spend loads of time ignoring myself, too. I have tips on How To if you need the brochure.
Off to the doctor tomorrow for another platelet count, two-week checkup. I'm still playing the numbers guessing game ~ not because I have to, but also because a bag of jellybeans is involved.
For those playing the platelet-growing pool,
Last stats:
Two weeks ago, the butt-bone was victorious
with baby platelets @ 69k,
over halfway to short-term goal of 100k
I predict 99k, not because it would be
the normal, slow-growth average
but because it's a pretty number.
I may need a unit or two of blood for good luck and farewell, but we'll see.
I predict the doctor will order the PICC Line out soon. Not much of a prediction as he told me as much last time. PICC Lines only last for about 3 months due to risk of infection and thrombosis, and I got mine December 29th. Bittersweet because you could serve tea off mine it's so immaculate. I'll hate to see my Valentine go, but I must move on with my life ~ even if it means I will have to endure more pricks along the way without him. Needlepricks for blood counts...what did you think I meant? Sheesh!
Aw, who's kidding who...I love the way you think.
short-term goal: 100k
long-term goal: 315k
And, to get rid of the Australipithicus forehead hair, sideburns, and goatee...the nails, I'll keep.
Your week begins with a rush, but quickly falls into a manageable pace that allows you to methodically plow through your chores. You turn toward the more serious side of life as you reevaluate what you need to do in order to keep the most important things on track. You've had your fun; now it's time to get back to work. Monday, March 12, 2007Loosely translated, the fun part must be subjective.
Making platelets is good, relieving and addictive, but I wouldn't call it fun -- the knitting of scarves made things manageable while I've been coming off steroids for the past fews days. Maybe that counts as fun. But am I complaining? Nope. I can't have fun until I can get back to work. Good Lord, you take that back ~ I am not high! I don't touch that stuff. I just like to work is all. And, to tidy things up.
There, I said it and feel better for saying it.
Maybe being a Merry Maid is in my near future....hmmmm...
Also, I've just been scribbling down notes of interest and research to myself every day so I will remember not to forget, when I can, between the fun. Again I say "Steroids are the Beast Goddess Who Taketh with One Hand and Crusheth Thy Nuts With the Other." My figurative ones ~ not literal ones. The moustache and beard are throwing you, aren't they? Well I can assure you, it's about the most masculine thing about me besides proud, fightin' Irish attitude. Which mainly explains the tendencies toward scotch, too.
What? You got a problem with that?? Hey, my great-great-grandfather was directly from Ireland, I can say that. Why, if I weren't so tired and in need of a good waxing, you'd be in real trouble, buddy. Don't put down My People. Ooo, now you've gone and made me miss my cross-dressing friend ~ he always inspired me to keep my nails looking as luxurious as I could, which was completely motivating at the same time, and I could almost keep up with his hair but never his shopping for shoes...
My my. It's the 'Roids Leftovers gigressing again. Ignore me. I spend loads of time ignoring myself, too. I have tips on How To if you need the brochure.
Off to the doctor tomorrow for another platelet count, two-week checkup. I'm still playing the numbers guessing game ~ not because I have to, but also because a bag of jellybeans is involved.
For those playing the platelet-growing pool,
Last stats:
Two weeks ago, the butt-bone was victorious
with baby platelets @ 69k,
over halfway to short-term goal of 100k
I predict 99k, not because it would be
the normal, slow-growth average
but because it's a pretty number.
I may need a unit or two of blood for good luck and farewell, but we'll see.
I predict the doctor will order the PICC Line out soon. Not much of a prediction as he told me as much last time. PICC Lines only last for about 3 months due to risk of infection and thrombosis, and I got mine December 29th. Bittersweet because you could serve tea off mine it's so immaculate. I'll hate to see my Valentine go, but I must move on with my life ~ even if it means I will have to endure more pricks along the way without him. Needlepricks for blood counts...what did you think I meant? Sheesh!
Aw, who's kidding who...I love the way you think.
short-term goal: 100k
long-term goal: 315k
And, to get rid of the Australipithicus forehead hair, sideburns, and goatee...the nails, I'll keep.
Wednesday, February 28, 2007
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
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
Tuesday, February 27, 2007
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!
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!
Thursday, February 22, 2007
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
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
Monday, February 19, 2007
"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!
Wednesday, February 14, 2007
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.
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.
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