Yeah.
I suck.
Don't rub it in.
First, I blame Facebook for my recent slacking off in posting. On Facebook, I just post these quick little blurbs regarding my current status and feel like I've done my duty updating everyone. Except that not everyone is in my Facebook clique, and those status updates are anemic.
Second, life was pretty uneventful for a few weeks going there. I had my usual schedule of clinic visits and transfusions. Little A turned three, and we had a nice small gathering in his honor, more adults than kids, but the birthday boy didn't seem to mind. He had a buddy to play monster trucks with and that made him happy as clams.
I got a nasty cold (that still hasn't quite unhooked its claws) that turned from a snot factory to laryngitis and a hacking cough. My voice still retains a hoarse, gravely quality that I'm not sure if I want permanently. But hey, some of the professors in the theatre department in college always liked to comment on the irritating, nasally tone of my voice (not to mention my Virginia accent), so now maybe I've got some sonic depth when I speak.
The big news of late, of course, has been my sojourn here to Houston for treatment at MD Anderson Cancer Center. My RVA oncologist made the initial appointment to see the folks out here a couple of weeks ago. I came down for a few days, accompanied by my dad, for some tests and such.
Holy smack, what a difference from Dr. Dickweed in Baltimore. The oncologist here right off the bat presents me with a clinical trial, as well as making the point to tell me there are other treatment options should I not choose the trial or the trial not work. Yeah, that's more like it.
Where does that bring me? I'm back in Houston, for a minimum of thirty days, to participate in a clinical trial for a brand-spanking new chemo drug. And I am the first leukemia patient in the world to take this drug. Whoo! Guinea pig! But the drug's just a boring orange pill, about the size of an aspirin. So no glowing liquid or ginormous pill. But it is pretty cool to think I am participating in medical history. Patient Zero, that's me. Or something like that.
But it's not all glamour being a medical pioneer. The first and seventh day of each cycle of pills (A cycle is a week. I take the pill for one week and then am off for two.) I have to fast for ten hours prior to taking the pill and can't eat or drink anything for two hours afterwards. Damn, that's fun. Especially when you expect to be able to take your first pill at 8 AM, but the typical medical skulduggery mucks everything up and you don't swallow that bad boy until 11 AM. Which of course means you don't get to eat or drink until 1 PM. Good times. My poor little stomach was so distressed that at about 12:30 PM I retched. Whoop! Whoop! Then of course I had these hourly blood draws until 11 PM that night.
I get to go through all that torture again tomorrow. Sheesh, the things I do for the furtherment of science.
Then yesterday, instead of checking out the Houston Rodeo which is setting up shop at the Reliant Center up the road, I spent quality time in the bathroom, drinking Gatoraide, slugging Pepto, and becoming sucked into the ANTM marathon on Bravo. Not sure if the new drug or the two antibiotics that the docs got me started on tore up my intestines, but that sure was not how I thought I'd spend my Saturday. If my body cooperates, then I might strike out and do some exploring today.
My temporary home here in Houston is a hotel owned by the hospital right across the street from the main buildings. MD Anderson is huge, probably close in square footage to VCU/MCV in Richmond, and all these folks do is cancer. The area where Anderson is located is like this community of medical facilities here in Houston. There are all flavors of hospitals here: heart, orthopedics, children's, trauma, research. Not to mention various schools for medical training. I guess if you're going to get sick or injured, this would be the place to do it. The staff at Anderson has been nothing short of wonderful. Learning the new system after months of treatment back home has been a wee challenge, especially navigating the labyrinthine buildings. But I am gradually easing into life here.
My digs here a nice-a mini kitchen, living area, bedroom, cable TV. Everyone staying here is a patient at MD Anderson which means there is a pretty high geriatric content (I've seen younger folks getting treatment at the hospital; I guess they just aren't staying here.), giving the hotel the feel of a retirement home. But it's quiet, and they have some nice amenities considering most guests stay here for weeks at a time. I'm within walking distance (or METRORail ride) away from a big park, museums, and the Houston zoo. The weather here has been like RVA in April or May.
Can't complain really. Just wait and see if someone here can whip this stupid disease into submission.
My dad has been with me most of the week (Third reason why I haven't blogged yet is my father's commandeering the Pink Machine to do work down here.), but he left yesterday. Adrian's set to come on Wednesday for a visit, and if everything works out, my mom and Little A will pop down for a few days as well.
Sigh. Sniff. Sniff. I miss my boy.
Maybe I should stop listening to Johnny Cash.
Is there more ANTM on Bravo...?
Sunday, March 01, 2009
Tuesday, January 20, 2009
The Coronation of The Sun King
File this under "Times when I wish I had a camera phone."
Yesterday, as I waited in the lobby of Cancerville Clinic for my dad to pick me up, I spotted a guy wandering about in a black parka-like jacket. Pretty normal looking from the front, but when he walked past me, I got an eye full. Across the back of the jacket was emblazoned this mosaic of images: Obama's profile, the White House, "44th President", and a bunch of other stuff I couldn't quite make out. All in little red, white, and blue rhinestone. Rhinestones. As in BEDAZZLER.
For real.
Rhinestones.
Seriously.
The President. The RHINESTONE President.
It really was a bit too much.
And that's all I have about that.
Yesterday, as I waited in the lobby of Cancerville Clinic for my dad to pick me up, I spotted a guy wandering about in a black parka-like jacket. Pretty normal looking from the front, but when he walked past me, I got an eye full. Across the back of the jacket was emblazoned this mosaic of images: Obama's profile, the White House, "44th President", and a bunch of other stuff I couldn't quite make out. All in little red, white, and blue rhinestone. Rhinestones. As in BEDAZZLER.
For real.
Rhinestones.
Seriously.
The President. The RHINESTONE President.
It really was a bit too much.
And that's all I have about that.
Friday, January 16, 2009
Well, ass.
That was a waste of time. (Actually, no. It was a very pleasant trip with my dad.)
First, I was told by the appointment scheduler to arrive at the clinic at 6:30 a.m. for blood work. I bust my ass in the freezing cold to get there on time after a sleepless, anxious night. The security guard in the lobby is of no help, so I wander around before finding the clinic. The lobby is totally empty-no employees or anyone. I pace about for 25 minutes until I find someone to help me figure out what the heck I am supposed to be doing. Since I am a new patient, I have to go through registration. The registration office doesn't open until 7 a.m. Swell. So I totally had to skip out on the hotel's free breakfast (which according to my dad was pretty good) to wander aimlessly around an overheated building for a half an hour. In fact, the phlebotomy lab didn't start taking people for blood work until 7:30.
After the morning mess, things ran much more smoothly. I was seen (On time!) by one doctor who chatted with me about my medical history and did a brief examination. Then I waited for over an hour for the next doctor to come and speak with me about the clinical trials they were running.
Turns out he was Dr. Doom and Gloom. Right off the bat he tells me they don't have anything for me treatment wise. Apparently, the main excluding factor is the number of chemo treatments I've already had. It's just too many. Okay, I'm thinking, all this information was in my charts that got faxed over the the hospital days before. So I drag my butt up to Baltimore just for the docs to tell me something that could have been conveyed over the phone. Why did they need me there warming a chair to tell me this? Ugh. Frustrating.
Dr. Doom and Gloom doesn't stop there. He continues on his litany of downers by telling me that at this point I have two options: let the disease run its course and take me to the sweet by and by or roll the dice on some other experimental treatment elsewhere that may or may not work or could very well kill me. The doc seemed to be leaning towards the "Lay down and die" option because he felt there really wasn't anything more medicine had to offer based on the fact that the leukemia has been mostly unresponsive to previous treatments.
Sweet baby Moses. I haul up to Baltimore to hear bad news I could have gotten over the phone at home, then I get the All Is Lost Abandon All Hope Ye Who Enter Here speech to boot? Thanks a frakking lot people.
However, Doc D&G did suggest that if I wanted to look into the possibility of other treatment options I check out a hospital down in Houston with a pretty robust cancer program. That's what I am leaning towards right now with the support of my family. If the folks in Houston have another option, then it would mean uprooting to Texas for at least a few months.
I am certainly not ready to lay down and die quite yet. I'm not sure that the doctor understood the affect my child has on me in all of this. I don't want him to grow up thinking that his mommy didn't fight to stay alive with everything she had.
I've always said that I would be in this until the bitter end, until the doctors told me the arsenal had been stripped clean of weapons. But to actually hear that from a doctor is like getting smacked in the lips by a cast iron frying pan.
My mind has been processing all of this. I have no idea how much time I have left before the disease takes me. I don't know how much time God's given me. But I can tell you this: that time will be spend having fun, loving life, and continuing to take up the banner against my stupid zombie leukemia. Who's with me?
First, I was told by the appointment scheduler to arrive at the clinic at 6:30 a.m. for blood work. I bust my ass in the freezing cold to get there on time after a sleepless, anxious night. The security guard in the lobby is of no help, so I wander around before finding the clinic. The lobby is totally empty-no employees or anyone. I pace about for 25 minutes until I find someone to help me figure out what the heck I am supposed to be doing. Since I am a new patient, I have to go through registration. The registration office doesn't open until 7 a.m. Swell. So I totally had to skip out on the hotel's free breakfast (which according to my dad was pretty good) to wander aimlessly around an overheated building for a half an hour. In fact, the phlebotomy lab didn't start taking people for blood work until 7:30.
After the morning mess, things ran much more smoothly. I was seen (On time!) by one doctor who chatted with me about my medical history and did a brief examination. Then I waited for over an hour for the next doctor to come and speak with me about the clinical trials they were running.
Turns out he was Dr. Doom and Gloom. Right off the bat he tells me they don't have anything for me treatment wise. Apparently, the main excluding factor is the number of chemo treatments I've already had. It's just too many. Okay, I'm thinking, all this information was in my charts that got faxed over the the hospital days before. So I drag my butt up to Baltimore just for the docs to tell me something that could have been conveyed over the phone. Why did they need me there warming a chair to tell me this? Ugh. Frustrating.
Dr. Doom and Gloom doesn't stop there. He continues on his litany of downers by telling me that at this point I have two options: let the disease run its course and take me to the sweet by and by or roll the dice on some other experimental treatment elsewhere that may or may not work or could very well kill me. The doc seemed to be leaning towards the "Lay down and die" option because he felt there really wasn't anything more medicine had to offer based on the fact that the leukemia has been mostly unresponsive to previous treatments.
Sweet baby Moses. I haul up to Baltimore to hear bad news I could have gotten over the phone at home, then I get the All Is Lost Abandon All Hope Ye Who Enter Here speech to boot? Thanks a frakking lot people.
However, Doc D&G did suggest that if I wanted to look into the possibility of other treatment options I check out a hospital down in Houston with a pretty robust cancer program. That's what I am leaning towards right now with the support of my family. If the folks in Houston have another option, then it would mean uprooting to Texas for at least a few months.
I am certainly not ready to lay down and die quite yet. I'm not sure that the doctor understood the affect my child has on me in all of this. I don't want him to grow up thinking that his mommy didn't fight to stay alive with everything she had.
I've always said that I would be in this until the bitter end, until the doctors told me the arsenal had been stripped clean of weapons. But to actually hear that from a doctor is like getting smacked in the lips by a cast iron frying pan.
My mind has been processing all of this. I have no idea how much time I have left before the disease takes me. I don't know how much time God's given me. But I can tell you this: that time will be spend having fun, loving life, and continuing to take up the banner against my stupid zombie leukemia. Who's with me?
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