Whoa, Camel!

2009-03-26T00:57:00.002-04:00

Barbara Bush is my Neighbor

2009-03-04T23:25:00.004-05:00

She's recovering at a heart hospital right up the road here in Hospital City, U.S.A. How cool is that? I always liked Barbara Bush. She seemed like a neat old broad who had a lot of cool stories to share over some coffee. Quite possible she took her coffee with a splash of bourbon.

I really want to stroll up tomorrow and see if her son hanging around. Maybe get a chance to thank him for the letter of encouragement he sent me last year after I was first diagnosed.

Or should I just send flowers? That might go over a whole lot better with Secret Service than my crazy cancery butt showing up for a visit with the former First Lady.

More Dispatches From the Western Front

2009-03-02T22:55:00.005-05:00

Down in the lobby of the hotel this evening, an Irish rock band put on a little mini-concert for the guests here. It took my back to my freshman year in college and rocking out to Black47. This place is totally odd. Looks like a real hotel: front desk, room service, pool, restaurant. There are nice events like the concert and movie nights, but then you notice the large number of guests with walkers or in wheelchairs or dragging IV stands along. Sometimes I feel like I am living in a weird purgatory for sick people. Where do I get these ideas? Too much alone time maybe...

Anyway, the concert was nice.

Today was the last day I had to take The Orange Pill of Intestinal Destruction. At least for another two weeks. Frankly, I'm a little nervous about hearing the results of my blood work tomorrow (This was another one of those days where I had multiple blood draws over a ten hour period. In fact, my last one of the day is tonight at 11:30 AM.). Because over this nearly a year's worth of treatment I've gotten so used to hearing "It didn't work," I'm just expecting the worse tomorrow. To be told that, oh well your white counts are still climbing and it's back to the drawing board. But I have to just go where God is taking me on all this. Just riding the crazy cancer train and waiting for my stop.

Yesterday I felt pretty good so I hiked out to Rice Village to check out what I was told was some good shopping. It was about a 45 minute hike out past Rice University (Yes I am insane.). The shopping district reminded me a lot of Carytown in RVA. There were local shops and boutiques all scattered in vintage strip malls. Only smack in the middle of blocks of old storefronts was a fancy new mall with chain stores like the Gap and Sephora.

So I had taken my pill around 11 AM as scheduled and when I got to Rice Village, I settled into a chair at Starbucks with some Earl Grey. By this time it was about a half hour after I consumed the Orange Pill of Intestinal Destruction and I was hit with a wave of strong nausea. I was able to breathe through it because Lord knows, I did not want to barf all over the sidewalk in front of the Sunday shoppers. I chucked the rest of my tea, and still feeling a little unwell, headed over to a used bookstore across the street.

Books are my crack cocaine. Some women compulsively buy shoes. I buy books. Even though I had already brought four or five books out here with me, I couldn't resist the lure of cheap books. Besides, I needed to have something to read at lunch, the single diner's amusement.

I wasn't the in book store for ten minutes before the nausea came up on me. Hard. I knew this was not going to be a good scene. I managed to get outside with enough to wretch into a wad of tissues (Hadn't located the bathroom).

Yeah, buddy. Taste the flavor sensation.

I pulled myself together, coughed a few times, and went back in the store. I guess when you've got The Cancer you kind of don't give a crap who sees you wretch into a bunch of tissues. You've got bigger fish to fry. And besides, there were books to buy. After picking up two new tomes on the cheap, I perused a few more shops like a candy boutique, drank some water, and rested on a bench for a bit. All the stomach uglies were gone, and I was ready for my French onion soup lunch and reading time. I ended up tearing through 150 pages of Let the Right One In. I spent another hour or so exploring and shopping and then made the hike home. My butt (and my feet and legs) was whupped by the time I reached the hotel, but it felt good to have struck out on my own and overcome the stomach craziness to enjoy a rare afternoon alone.

While I was waiting to get my blood drawn and of course, about 45 minutes after taking TOPoID, I had another brief bout of nausea with a dash of retching. My protocol nurse was there and thankfully she had me ready when the first wave hit with a barf pan and everything. Adrian says now I'm finally like every other cancer patient on chemo, pukes and such. Great. That's a club I was dying to join.

Maybe with my pill reprieve in the coming weeks I can avoid the stomach nonsense.

Just in time for my conjugal visit.

Hospital City, USA

2009-03-01T08:53:00.006-05:00

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...?

The Coronation of The Sun King

2009-01-20T21:05:00.003-05:00

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.

Well, ass.

2009-01-16T10:11:00.003-05:00

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?

Hey look! I'm in Baltimore!

2009-01-14T22:36:00.005-05:00

Hope everyone had a great holiday. Ours was low-key with lots of visits with friends and family. Alastair had a great time opening gifts, hanging with the fam. He definitely made out like a bandit with everything from a ride-on tractor to a monster truck play arena to the cast of the Backyardigans in stuffed animal form. Being a parent changes Christmas for you; the focus moves towards your child's happiness. So Little A had a great time; I had a great time. Granted I was still recovering from all the sickness that had been plaguing me.

New Year's was also pretty quiet. It was too freaking cold and my bladder still unpredictable to take in the Carytown fest. Adrian and I opted for the buffet at our favorite Indian restaurant, followed by taking in a fluff sci-fi flick, and a bit of bubbly before turning in for the evening.

I'm still a little disappointed that Christmas was kind of half-assed this year. No tree. No homemade, personal gifts. Yet we did get in two visits to the Botanical Gardens to see the awesome light display.

Since then, life has been pretty dull. I have thrice weekly visits to Cancerville Clinic to get tanked up on blood and platelets. (Keeping alive the survivors of the stupid zombie leukemia assault until help can arrive.) Adrian's started back to work which threw our little family into a bit of an upheaval. We had gotten used to having him available for Little A while I spent my time down at the clinic. Now we have a great couple from our church coming over to watch Little A. He is having a some difficulty adjusting to the change-a few weepy sessions at night and in the morning. But he's a tough nut, and I think he'll soon be rolling with the new arrangement.

I've recovered from my December maladies. Finally, my UTI has left the building and my system seems to have adjusted back to normal. My violent, consumptive cough is relegated to an annoying that pops up when I laugh too hard or when I go out into cold air. However, I have developed a persistent runny nose as of late.

Since I've gotten past the infection, my doc set up an appointment up at Johns Hopkins for me to have a consult and see if I'm an appropriate candidate for any of their clinical trials. I guess you could say it's like a medical audition. Though I'm not sure if it's a cold reading or I need to come prepared with comic and dramatic monologues. Anyway, that appointment is tomorrow morning. They want me there at 6:30 a.m. for blood work. Awesome, I know.

So here I am hanging out with my dad in a hotel in downtown Baltimore. We had a tasty tuna melt dinner at a pub around the corner. I'll be getting up at the ass crack of dawn to schlep up to the Metro station up the street. From there I'll be taking yet another medical adventure of unknown circumstances.

Wish me luck. Hopefully, I make it to call backs.

Why'd Nobody TELL me...

2008-12-26T18:13:00.001-05:00

that Ben Folds does the music for Over the Hedge? Holy smack, that made the movie for me.

I'm rockin' the suburbs.

I'm still standing. Yeah. Yeah. Yeah.

2008-12-24T12:18:00.006-05:00

Lawdy people, it's been a rough month. But I am here, still fighting the good fight with just a few more chinks in my armor.

I've been pretty much a sick wreck for several months. Around Thanksgiving, I started feeling like refried poop. Achy, weak, intermittent chills and fevers. When I wasn't hanging around Cancerville clinic getting tanked up with blood or platelets (A process that sometimes takes nearly all day.), I was at home wrapped in blankets either on the couch or in the bed. Poor Adrian was having to juggled taking care of our whirling dervish of a child and his pathetic sick mess of a wife. I was a lifeless puddle of flesh. My small bursts of energy could carry me through the day, but I never felt like blogging, so apologies all around for keeping the theater of my discontent dark for so many weeks.

Turns out I have some sort of infection, a wicked little bacteria that resides in the same family as TB. My doc's got me on two kinds of antibiotics that seem to have kicked out the "feelin' craptastic" side effects. Yet, the infection decided to start playing house in my urinary tract. And we all know what fun a UTI can be. It's like this really bad joke: the UTI causes this nuclear blast of pain whenever I pee AND it also causes me to pee A LOT. Never knew the toilet could induce such a sense of dread. Plus, as anyone who's had a UTI can tell you, when you've got to go, you've reeeeeally got to go. Like now. Like right this very instant or you'll wet yourself. It's not an uncommon sight to see me dashing off to the bathroom doing the pee-pee dance like a four-year-old.

To cap off my loveliness, I developed a weird craving due to my whacked out taste buds (More on that later.) for ruby red grapefruit juice. I kid you not; I drank like a gallon in two days. Hey, you know what's one thing you're not supposed to drink when you have a UTI? Citrus juice. Know why? It exacerbates (you know, to make worse) the pain. Who's a BIG FAT MORON? Who spent the next few days afterwards going full retard every time she voided her bladder?

Good times. Still trying to get the UTI under control. I've got another antibiotic to start in hopes that we can finally chase away the last of the ickies.

Due to low platelets, I've been susceptible to weird bleeding. My legs are all bruised to hell. I bite my lip in my sleep and I've got a fat welt on my lip for days. I also had a bout with nose bleeds, especially at night. My pillowcase looked like a crime scene (Thank God for Oxyclean stain remover and a good washing machine.).

Then I picked up this snotty, bronchial thing that's been making the rounds. Of course since I have no functional immune system to speak of, I get the horrible consumptive cough. I was coughing so hard that sometimes I would wretch and heave. It was horrible. After coughing like a maniac, my stomach would then start spasming. Every time I did this in the presence of my cats, I honestly think they were waiting for me to hork up a fat hairball. The cough is finally starting to fade into the background; I no longer sound like a doomed heroine in some 19th century novel, wasting away in my bed coughing up blood into a lace hankie.

As for my treatment, the last round of chemo brought down the white counts in my blood slowly, but now they are back on the rise (Meaning chemo no work-o). So the doc is researching clinical trials at hospitals around the East Coast. But first, I've got to be free of this infection before I can be considered a candidate for any trial. I'll be on the move soon, just don't know when or where. Life is a highway, people.

There's the litany of most of the fun adventures I've been having. Needless to say, all my sickness has kept me from really getting into Christmas this year. I've gotten gifts, but nothing special or handmade like I prefer. I didn't even have it in me to make my annual Christmas mix for my friends. The house is mostly decorated. All my nativity sets are out on display, and The Mister did a great job hanging our Richmond Rococo-lite wreaths on the windows and wrapped the evergreen in front of the door in lights. But we don't have a real Christmas tree to speak of since I can't have a live tree in the house for fear I might get some crazy tree fungus or something. We do have a silly, lopsided table top tree with colored lights and no ornaments that is functioning as our substitute.

But I'm here with my family. That's way more important than any of trimmings and trappings.

And I've not crapped out on Cannonball Read but been piss poor with updating and writing my reviews. Here's what I've knocked out so far:

Book 21: The Darkest Part of the Woods-Ramsey Campbell
Book 22: The Hollow Chocolate Bunnies of the Apocalypse-Robert Rankin
Book 23: A Nearly Normal Life-Charles Mee
Book 24: Body Piercing Saved My Life-Andrew Beaujon
Book 25: Richard Matheson Collected Stories Vol. 3
And just finished Book 26-The Black Spiral: Twisted Tales of Terror

I am pretty sure this is where I stand; I'll have to check my bookshelf to confirm.

(Much props to the excellent Shawn of Texas and his care packages. Much appreciated and loved.)

I'm looking forward to a crazy Christmas with Little A and The Mister, hopefully feeling mostly human. And to the rest of you faithful readers who've been hanging around waiting for me to get my act back together, Happy Christmas. Enjoy the day, and in the immortal words of Christine Baranski in the holiday classic The Ref:

"Celebrate the birth of Christ, dammit!"

Pop Culture Cancer

2008-11-18T11:33:00.006-05:00

Maybe I'm just more attuned to the slightest whisper of leukemia anywhere outside of my own sphere of existence, but it seems like leukemia is popping up everywhere.

First, in one of the books I read for Cannonball Read (The Road Home, a recent release), the protagonist is a widower who lost his wife to leukemia. And yeah, she was like 35.

Then there were new episodes of House where bone marrow biopsies are performed to rule out a leukemia diagnosis. The depiction of how a biopsy is done was ridiculously off the mark. I mean, hello! Where was the pathologist? Plus, in one of the episodes, House blurts out that a patient needs a bone marrow biopsy and that a donor had been found with such flippancy I almost choked on the absurdity of it all. Now I understand why my friend Dr. Kate gets irritated by this show. If it were not for Hugh Laurie...

Next was the latest Episode You Just Can't Miss of ER with Extra-Special Flashback Containing Dead Characters! In it, Angela Bassett's character (Okay, that woman looks like she was carved out of stone. Her skin is incredible!) remembers losing her young son in the ER. Now The Mister and I missed the bulk of the episode, but reading online, I learned that her son presented with seizures and vomiting blood. Then he died. Of acute leukemia. According to the synopsis online, they tried to flush out his white blood cells or something. Man, I wish I'd watched the episode now so I could have given it my stink eye of skepticism. Dr. Green told her it was "an unusual presentation." No joke.

Finally, there's a new French movie out,Un conte de Noël, starring Catherine Deneuve as the matriarch who's recently been diagnosed with...can you guess...leukemia!

I'm telling you folks; leukemia is the new black. It's the hot disease for the season. What can I say; I've always been ahead of the trend.

For those who are wondering, I'm doing good. I just saw my oncologist today, and we're in a "wait and see" period for this last round of chemo. Right now, I feel just fine, but my blood counts are low. Yesterday I got a unit of blood. As I type this, I am receiving my first of two units of platelets here in Cancerville Clinic. They are tanking me up to keep me going.

The blood drive was a big success. Much thanks to everyone who came out to donate, even if you didn't get a chance. At last I heard, they had collected about 44 units of blood (or somehwhere in the neighborhood). Yeah! You people are awesome!

Spill It

2008-11-10T15:31:00.003-05:00

This Thursday, November 13, from 3-7 pm Dumbarton Elementary School will be hosting another blood drive in my honor.

If you're local and you've got blood, head on over and share the wealth. I know I've done my fair share of taking these past months. Call ahead to the school and let them know you'll be there so the VA Blood Services can have a good estimate of attendance.

If you're not local and you've got blood, find some time to donate if you can. It's a worthy endeavor. Sure, the free snacks are nice but saving someone else's life in an afternoon is like superhero awesome.

Cuteness Abounds

2008-11-08T15:10:00.001-05:00

Yeah, those horrible pit bulls. Watch until the end. You'll be mush.

The good life @ Yahoo! Video

Space Invaders

2008-11-05T08:09:00.012-05:00

Taking a look out of the window, it looks like any other grey, rainy November morning. I don't spot either of the following 1.)Fire reigning down and the four horseman of the apocalypse descending to Earth to signal the end of times 2.) Rainbows, unicorns, gold doubloons, and hark the herald angels sing.

So the beat goes on.

And I still have leukemia. The only "change" I am really concerned about right at this particular moment is if the president-elect can come down here and lay hands on me and heal my cancery ass. Call me selfish, but right now I've got bigger fish to fry.

One thing I did read this morning that troubled me is the talk that the embargoes may now be lifted from Cuba with the new administration. Okay,first how about Cuba clean up their human rights(especially in regards to gays), reinstate religious freedom, freedom of the press, end censorship of books and the jailing of librarians, and start letting their people leave legally if they want to instead of forcing them to paddle the sea in homemade boats. Hey, how's that for a thought? You want some embargoes lifted? Work for them.

Last week, we had an invasion of sorts in the Amos household. I meant to write about at the time, but I think I was pretty well traumatized by the whole thing. On and off since we moved into this house (and actually we had the same trouble in our rental house from back in the day), we've had issues with camel crickets. For those of you unfamiliar with what a camel cricket is (also known in some circles as spider crickets), feast your eyes:

Yum, I know. These little boogers are even more revolting up close and personal, and they can jump like nobody's business. It may not look like it, but camel crickets can actually get pretty big, with legs and all enough to cover most of the palm of my hand. For some reason, they have always reminded me of the face suckers from the Alien movies. You know, these guys:
The sight of one of these things in the house is enough to paralyze both The Mister and me. Alastair just points at them and says, "Big bug, mommy." Of course there was that time about nine months ago when he walked into the kitchen carrying the carcass of a camel cricket, "Mommy, what's this, mommy?" I nearly peed myself and vomited and passed out all at the same time. But instead I managed to swoop down and snatch it away from him, exclaiming "Dead bug! Gross!" Oh how I hope one never jumps on him; he'll be traumatized. Then should that happen, I foresee hysterical panic all around at the mere mention of a camel cricket.

Occasionally, our cats will come through in their roles as latent hunters and catch a couple. Rarely though do they kill them, but choose instead to rip off their jumping legs, making them more interesting playthings. Once bored with the camel cricket, they generally leave its not-dead-yet body in the middle of the floor or their food bowl. Our favorite choice of dispatching these little buggers is the vacuum cleaner; sucks 'em right up with minimal contact on our part.

A year or two ago, my dad came and poked around under our house, sealing off potential entry points for the accursed creatures, and it seemed to work. We had minimal intrusions. Apparently, they've found a way back into the house because with the temperature drop last week, these hopping scourge of the earth were back with a vengeance. One night in particular, we dispatched somewhere between ten and twelve camel crickets in matter of a few hours. It felt like every time we came down stairs there were two or three more in the kitchen or dining room or careening around the den or the laundry room. I had these nightmare visions of the floor covered in these jumping minions of Satan. I felt like Ripley, fighting off the never-ending swarm of acid-spitting predators.

Since then, their presence has declined with the odd bugger popping up here and there, as if the word got out about the Purple Weapon of Mass Destruction (aka the Dyson vacuum) welded by the humans. The camel crickets are more weary of mounting another large invasion any time soon. But we are vigilant.

Here's to one good thing about The Big House: no stinking camel crickets.

Oh and one more thing. I'm losing what little hair I have left. AGAIN. And this time it's a mangy look I'm sporting. There's a nice clean bald spot on the top of my head. Hotness. Chemotastic hotness.

Wake me when it's over

2008-11-04T07:44:00.007-05:00

I plan to spend most of today sleeping, since I maybe got three hours last night owing to a late night blood infusions and the less than relaxing accommodations, and reading. If I deign to turn on the telly, it will be to hover around the neutral cable channels so as to avoid all the squawking from the networks.

My mom's friend Sarah said her nightmare would be a repeat of the 2000 elections where it becomes too close to call, everyone goes ape shit, and the election results get smacked around the court systems for a couple of weeks while the rest of America rends their garments and gives up.

I am so weary of ads and junk mail and phone calls. Especially the phone calls. I don't know which were worse, the automated calls or the cold calls, one of which went down like this:

(I'm in the kitchen last week cooking dinner. The phone rings.)

ME: Hello

CALLER: Terry? TERRY? (I'm not exaggerating. The woman was hollering.)

ME: Excuse me?

CALLER: Is this TERRY?

ME: No, I think you have the wrong number.

CALLER: I have THE WRONG NUMBER?

ME: Yes.

CALLER: Terry...Terry...AMOS?

ME: Um,this is the Amos household.

CALLER: Well I'm calling on behalf of Barak Oba...

ME: *click* Guh.

Some people sould not be let near a phone.

I'm just not one to get all swooped up in a Presidential election. Maybe if we were a dictatorship and the person running the ship called all the shots, I'd be more passionate, but really if we were a dictatorship I think there'd probably be only one name on the ballot. And probably if you didn't vote for that name, you might disappear for a little while to be "re-educated". I'm more interested in local and state politics because decisions made at that level tend to have a more immediate and direct impact on my day-to-day living.

Cynicism is the word that best describes my attitude towards national politics. It's mostly business as usual up on Capitol Hill, no matter who's behind that big desk. Because once all the dust has cleared from the election and the fancy speeches and gilded promises faded, it's back to crabby, partisan squabbling and power plays and the well venerated game of finger pointing.

So as I've said after nearly every election, "Meet the new boss. Same as the old boss."

Totally unrelated note, is the new Vanity Fair out on magazine stands yet? The celebrity websites have been covering it, and Kate Winslet, my girlfriend, is on the cover looking smoking hot and not unlike a certain iconic French actress whom I also admire. I think I might support Vanity Fair in their choice of cover subject and pick up a copy

It was a good Halloween

2008-11-03T13:33:00.008-05:00

I feel like a boob for not posting anything all weekend, but the news I got on Friday wasn't good. The blue chemo was a modest fail; it destroyed the blast (leukemic) cells in my blood, but only reduced the blasts in my marrow by 20%. In order to be considered in remission, I need a lot more than that. My marrow's still got 70% blast cells. While it may not be considered a full success, the blue chemo did have some effect on the leukemia which means that it isn't completely imperious.

What really disturbed me is the statement my oncologist made, "We are starting to run out of options." The cancer has already proved resistant to chemo (or similar forms of chemo) that I've had in the past. There's obviously a finite number of types of chemicals used in treatment, so I can't get brand spanking new stuff but for so long.

I've always said I will fight this thing until the docs tell me there's no more weapons left in the scientific arsenal. To actually face a dwindling supply of ammo is very disconcerting.

Guess it's time to start researching clinical trials and start getting serious about a macrobiotic diet.

But there was a bright spot on Friday. Because my white counts were still fairly low, my doc let me put off my new treatment until today, meaning I got to go trick-or-treating and enjoy the weekend with my family.

It's funny how things change when you've got children. There are some things about your life (sleeping in on Saturday, making last minute plans) that vanish, and you feel the loss. Then there are are other things that change, and owing to the love you have for your child, you embrace the change.

Halloween is a big holiday for me and The Mister. We used to put a lot of effort into planning our costumes, decorating the house, and throwing our annual bash. This year, Little A cooked up his own costume idea (Puss in Boots from Shrek 2), and even dictated what mommy would be (a princess). We decorated the house, but not party level. Of course, we didn't have a shindig either.

And that was just fine. In fact, I wouldn't be too upset if we never hosted another bash. The joy in Little A's face while we went trick-or-treating is enough for me.

We started the evening having dinner with my folks, then we all (yours truly, the princess) donned our costumes and went to a few houses on my parent's street. Since spending so much time there, Little A has gotten to know the neighbors, especially two boys across the street who are his big buddies. From there we went home to hit our own street. Little A took to trick-or-treating like a champ, marching up steps, exclaiming "Trick or Treat!", and making his exit with "Thanks" or "Happy Halloween". The Mister and I were there behind him, Princess and Race Car Driver, loving every minute of it.

Now, even three days later, he keeps asking if Halloween is over. To get a piece of candy from his stash (one or two a day), we play trick-or-treat in the house where he knocks on a door and one of us opens it to distribute the candy.

I'm overjoyed that my kid loves Halloween as much as I do.

Well, currently I am hanging in room 122 of The Big House and waiting to get started with this new round of treatments. It's three chemicals I've never had before, nor have I had a chemical closely related to them. The hope is that these poisons will squish this cancer crap into remission and get us back on the bone marrow transplant track. The fellow, a nice young Southern guy, will be bringing me up some literature about the chemicals I'll be getting. That ought to be interesting.

Otherwise, I'll be here, trying to be productive and working on my writing, my reading, and my cable television viewing.

Prayers and supplications requested. And if anyone wants to dance around shaking a chicken and spitting rum into a fire on my behalf, I won't turn that down.

My butt's numb

2008-10-30T12:45:00.002-04:00

While I appreciate the doctor's efforts to reduce the amount of pain I feel during a bone marrow biopsy, I am not thrilled about the fact that I am numb from my butt all the way down the back of my leg to my heel on my right side. Makes me walk like I'm learning to use my limbs for the first time.

Today's biopsy is to gauge the success of my latest round of chemo (Blue ink!); we should have the results by tomorrow. If the results aren't good, like I've said, my doc has threatened to admit me immediately to start another round of something else. On Halloween. Like my favorite holiday, ever.

Sigh.

I love my life.

Also, Pajiba posted my book report for The Dud Avocado. Cruise by and read it. Then go read the book.

Brickmouth

2008-10-27T21:02:00.004-04:00

I woke this morning to a freakishly huge swollen lower lip. It was gross. I've had a fat lip before, and this was worse. And the sores inside my lip had become excruciating painful. Eating breakfast, I felt like the Elephant Man.

Thank the good Lord that I have to wear a mask while I am in Cancerville Clinic so I didn't have to endure stares from people wondering who'd be so bold as to punch Leukemia Girl in the mouth. The nurses and nurse-practitioners all gathered 'round to give my lip a good stare. Kevin, the nurse-practitioner I normally see, asked me if I had anything for pain. After my "Nuh" reply, he asked if I wanted anything. My eyes went buggy as I nodded my head. When he warned me that the painkillers could make me constipated, I said, "Yuh. I cuhn deawl."

The swelling has gone down considerably since then, but I've still got this nasty red burn-looking sore along the inside of the lip. But I've also got some cream with which to treat the sore.

And my new friend.

Oxycodon.

Ahhhhhhhhhh. No more feeling like my mouth was scorched earth. Just feeling good.

What cracks me up about the trials and tribulations of my treatment is that I can't have the typical symptoms. Everyone always asks about nausea, which I've never had. No, I get a funky-monkey case of brickmouth. Nonconformist to the core.

My latest Cannonball Read book report went up today. Give Pajiba some traffic and read all about it.

And we'll all float on OK

2008-10-26T22:43:00.004-04:00

Since coming home Tuesday afternoon, I've been reorienting, once again, to home life after a stint in the Big House. For the first few days, I slowly got through the typical case of "hospital belly" developed from sitting on my can too long and eating phenomenally non-nutritious and non-fibrous hospital food. Then there were the three or four days where my body just ached. Pains over most of my body making it annoying to wear clothes, sleep, or be touched. In the past few days, my mouth has erupted in pain and irritation. I have this swell looking red sore on the inside of my lip and the inside of my mouth feels like I've been rinsing with Agent Orange.

Now is it hard to understand why I am a wee bit on the grouchy side when I first come out of chemo? Can anyone question why it is sometimes hard for me to be a pleasant person? Good. But if not, I'll gladly light your inner lip on fire and then you get back to me about how congenial you feel.

What has been particularly difficult this time around with my treatment is that things are way more complicated than they were a month ago. This summer, my main focus was on fighting the disease, getting through the rough parts of chemo, and moving forward. Now I am fighting on multiple fronts against the fact that people are crappy and the world is sometimes bad place. It's not just enough to worry about treatment working but now it's whether or not I'll be able to even get treatment. Instead of just being concerned about how my stupid disease is affecting my family, I've got the added worry about how their basic necessities are going to be provided for. Swell. Like I need more stress.

I wear a bracelet inscribed with the words from Philippians 4:13, a verse any well-churched adult can probably quote at the drop of a hat: "I can do all things through Christ who strengthens me." Lately, I've been trying to tap into that strength. A lot. So it helps during the times when I feel like I am mired in the world's worst pit of black tar to look down and read those words.

Thursday I go for a bone marrow biopsy (Number 12! Or 13! I've lost count!), and I'll know the results by Friday morning. My doc has told me to be prepared that if the marrow is not clean (meaning Chemo Big Fail AGAIN), he will admit me on Friday to start more chmo. Happy freakin' Halloween folks. I'm thrilled as piss.

In less cancery news, I keep forgetting to post links to my Cannonball Read Book Reports. Last week, I reviewed Wicked. Check it out. One, two. One, two. More book reports to come.

I had to go and open my big fat mouth

2008-10-20T14:31:00.009-04:00

All weekend, I've been pissing and moaning about how bored I am here in The Big House. Nothing to do than read, wander the halls, watch bad TV*, dork around on the internet, and avoid my writing responsibilities. As usual, my side effects from this round of chemo haven't kicked in quite yet. More than likely, I'll get home and start feeling like utter poo within a day or two as my blood counts collapse and the inside of my mouth turns into the Cryptkeeper.

This morning I was sitting my nice cozy fat people chair when a strange burbling sound started coming from my bathroom. I peeked in to see gross, fetid water coming up through the drain in the middle of the floor. The watery sludge coated the floor of my bathroom then stopped. About ten minutes later, it started to stink like sewage. The nurses called maintenance, I took a nice long walk around the hall, then wheeled my recliner over to the door to get away from the stench of hospital swamp ass.

Two very friendly maintenance guys came up, evaluated the situation, and returned some time later with equipment. By this time, The Mister and Little A were here to visit and have lunch. All the grinding and whirring that emitted from the bathroom was of some fascination to Little A who informed the nurses that "two plumbers were in the bathroom unplugging mommy's drain with machinery."

The mess has been cleaned up and drain unclogged (supposedly), but I am still a little leery about taking a shower should the terror from beneath return. Oh and the smell is still lingering, but thankfully I keep room spray in my arsenal of hospital goodies. My room has the crisp fall odor of cinnamon and cloves, with a light underpinning of raw human waste.

Everyone's jealous, I know. I'm an awesome cancery mess with a stinky room.

In other less insulting to the olfactory senses, Friday night my mom acted as my broker and sold my homemade jewelry at our church's little annual craft show. She raked in a little over a hundred dollars which isn't too shabby considering most of my pieces range from $2-$7. Yeah, I'm a crafty, geeky gal who loves to make cocktail rings, earrings, and embellish frames with vintage buttons. Right before the Stupid Zombie Leukemia cells crept up and started funking with my life, I had even planned on opening an etsy site.

So if you want to do some early Christmas shopping, support me and my goofball hobby, drop me a line about making some jewelry for you or your beloved. I've got a few pictures of my work on file from back when I was trying to get the etsy business off the ground; otherwise I could whip up a surprise piece or something. I'm no pro, but hey, who can beat a $5 custom ring of your very own.

Okay, shutting down the self-promotion machine now! On to brave the shower!

* I somehow conned myself into watching the second Lara Croft movie (Gerard Butler! Who knew!) yesterday. Seriously, what has happened to Angelina? She was always on the slender side, but compare her now with the Angie of Lara Croft days and girlfriend is downright skeletal. Back then she had a shape, now her shape is more like post-Dachau. It's all those damn kids, sucking the life out of her. I'm planning an intervention to IHOP.

This is too funny

2008-10-16T17:46:00.002-04:00

Chatting it up with a couple of nurses this afternoon, I discovered why my room is so spacious:

"Oh, it's funny they put you in one of the bariatric rooms. That's why your doors are so wide."

"What do you mean, bariatric?"

"For big people."

Yup. I am in the fat people room. I kid you not. It's a hospital room for an overly large patient. The doors are extra wide, the chair is nice and wide (It's not, as I previously assumed, a loveseat.), bathroom is extra big.

I'm in the Large Marge Suite.

Can my life be any more absurd?

Scratch that.

Fancy New Digs

2008-10-16T15:09:00.007-04:00

This morning I got checked into my new home for the next five or six days, room 126 in the new Critical Care Hospital, and man, is this room huge. Square footage-wise it might not be any bigger than the biggest room I inhabited on North Six, but it is just so spacious. There are two nice pieces of furniture, a loveseat and rolling recliner (This outta excite Little A.) with lots of moving around space. Compared to the closet-like accommodations I've had as of late, this is the freakin' presidential suite. The window's huge and offers a lot of natural light; the view is meh but I can people watch. My television (as yet untested-I am trying not to rot my brain too much) is a shiny new flatscreen, and the remote has actual numbers, not just an one-way channel surfing button. So I guess if I have to be confined in the hospital, away from friends and family, this would be the room to be confined to.

My chemo doesn't start until tomorrow which begs the question-why admit me now? Well, seems they want to pump me full of fluids to prepare my poor kidneys for the chemo and predicted side effects of said chemo (dead cancer cells) that will come flooding through them. The poison regimen this time around is a new to me-untried cocktail of chemicals. Apparently this particular flavor of loveliness is notorious for causing mouth and throat sores and diarrhea. AWESOME. With kicks like these, who wouldn't want to have cancer? I mean, come on people! Mouth sores! Diarrhea! It just doesn't get any better than this!

Honest to Jupiter, I am bored out of my mind. I know I could be writing the three book reports I owe Pajiba on my last three Cannonball Reads. It's not that I didn't like the books; I've enjoyed them all and recommend them strongly. In fact I just finished The Dud Avocado, and it's one of the most refreshing books I've read in a while. And it's fifty years old. But every time I open up Word, my brain goes into paralysis. I could even be writing for the three other blogs I supposedly write for, yet I can't cook up the words. So I've been browsing the internet relentlessly, IM'ing on Facebook, and walking the circuit of my new ward.

I still don't feel sick, but I think enui will be the death of me. Or I could just turn on the TV.

Oh and yesterday, while out the last of Little A's Halloween costume preparations, I asked my smacktacular son what Mommy should be for Halloween (Mister A is dressing up as a race car driver-big stretch.). His reply, "A princess."

Never in my life, folks, but for my son, I will be a princess.

Positive Reinforcement

2008-10-14T22:18:00.004-04:00

New course of treatment starts on Thursday. In the spirit of not being Debbie Downer, I thought I'd share a few good things about the timing of this new regimen.

I get to watch the season finale of Project Runway over at my mom's house instead of in a hospital bed. I'm totally Team Leanne.
This time around I'll be in the brand spanking new oncology ward. Fancypants new rooms and everything. Plus the new building is right off the parking deck so visitors don't have to go around the world in 80 days to find me.
Another day to spend with my guys, work on Alastair's Halloween costume, and a few more button projects for my mom to sell at the church craft show on Friday.

My doc said this would be a different, untried chemical, probably kick my ass, but this is what I am looking for-something to put me through the wringer and hopefully my stubborn leukemia as well.

And I will miss the Big Flea Market this weekend out at the old fairgrounds. Nuts.

More notes of positivity- Tonight at dinner we were trying to cajole Little A (world's slowest eater) to finish up his dinner so we could take a trip to the mall for new shoes. He asked if we could take the truck to the mall. I told him we would take the Mini so we could play the iPod and listen to Madonna. Little A's face lit up and he exclaimed, "Mommy I love you!"

Yes indeedy, my son likes Madonna.

Back to the Drawing Board

2008-10-13T22:53:00.005-04:00

The scoop? The clinical trial is a big fail. I had a blood draw (After a rather lengthy resolution to an issue with my Hickman line. It was a panicky moment for me. Lordy, I treasure that good blood flow.) this afternoon at The Big House, and my white counts are ten miles high and climbing, meaning the drugs had no real affect on the cancer. Initially it seemed so, but now it's obvious the cocktail they were trying on me isn't the best bullet for the Kevlar coating on the leukemia cells. Oddly enough, my hemoglobin increased slightly over the weekend, and my platelets are low but not dangerously so.

Even better, I feel pretty good. I feel not sick. Saturday, I went to the Richmond Folk Music Festival, trekking after Little A for hours in the sun, followed by a great housewarming party at a friend's pad. Tonight I got to enjoy putting Little A to bed, reading him one of the favorite books of my childhood (and totally appropriate for the Halloween season), Liza Lou and the Yeller Belly Swamp. Despite the fact that my doc made me swallow EIGHT FREAKIN' HORSE PILLS tonight, I feel good. I do not feel the stupid zombie leukemia bumping and biting their way through my bloodstream.

So I cling to that happiness. Feeling good. Enjoying time with my family. Because otherwise I start looking at my treatment options as a slowly shortening list and a dark pall falls over me. Keeping the chin up and the positive attitude blaring is becoming more of a chore, especially when faced with this juggernaut of a disease. The coordinator nurse for the clinical trial told me that for as tough as I am, the cancer is merely mutated "me" cells, just as tough.

My own scant mortality is breathing heavily over my shoulder. I'm getting so damn weepy. I am not a weepy person, so this pisses me off. Tonight I was watching the little commercials towards the end of Antique Roadshow (Shut up. I like it.), and I started tearing up at an image of the bleedin' Lincoln Memorial. Because I thought of never getting to take Little A up to D.C. to see the monuments and the zoo and stuff. Farts, I am weeping about this as I type.

Dammit, I hate to cry.

I always associate crying with giving in and I don't want to give in but somehow I think maybe I don't have a choice in all of this. Maybe there is no magic bullet. Maybe this cancer can't be tamed. For all our great scientific advances, there's nothing in the medical arsenal to make it lay down and die.

So there you go. I visit my oncologist tomorrow to discuss what new cocktail of poison they are going to shoot in my veins and then sit back an observe this Freak of Nature Girl. I'm going to ask him if maybe there's the chemo equivalent of the big ass gun Vasquez carries in Aliens for the Zombie Warrior. You know something like this:

I'll more than likely be admitted to start chemo round 847 on Wednesday or Thursday. Now I am off to swallow a few more pills and try to get some sleep.

Keep on the sunny side. Always on the sunny side. Keep on the sunny side of life...

KABLAM!

Zombie Warrior weapons check.

Ms. Guinea Pig

2008-10-09T13:17:00.011-04:00

Participating in a clinical trial has certainly been an interesting experience, very different from my previous eight-bazillion other hospital stays. First, the clinical trial wing is quiet and low-key. In my wanderings of the halls, I've counted at most three other patients here. And they've all left as of this afternoon. There's a new patient diagonally across from me who has this huge room with a divider that opens into a mini-lab. I have no clue what is going on with him but seems like there are always at least two nurses in the room with him, and he's got a fan going and pointed right at him.

Every night since I've arrived, the rooms across from me become occupied by rather loud, college-age guys. It's a different set each night, some nights it's three or four. Last night there was only one guy in the room, still managing to be loud as junk as he yakked on the phone. By the morning, the frat guys are always gone. I have no idea what kind of study they are participating in, but I keep feeling like I am in one of those Michael Crichton books like Coma and that something surruptitous is afoot.

The nursing situation up here is also a change from what I am used to from my time on North Six. I have the same nurses every day, each shift change. I think the ratio is extremely low, and because this is a clinical trial, they are pretty attentive to my needs and how I am feeling. No pushing the call button and waiting fifteen minutes for someone to come and shut my IV machine up.

The treatment I am receiving is also pretty different. My chemo is in two forms, IV fluid and pill. Tuesday, I got a four-hour infusion of IV chemo in conjunction with downing two pills. During that first half an hour, I think I had a blood draw about five or six times. It was all a very meticulously timed affair following a little digital clock. I was outfitted with an IV site for the blood draws, first in my hand, but when that line dried up and stop giving blood, the nurses put a second site in the crook of my arm. Honest to Jupiter, all that digging about in my arm felt horrid. I got a little sick to my stomach and actually shed a tear or two. After that initial blood-letting, the blood draws were every half-hour, then every hour, now I only have them two or three times a day. The earlier samples are all part of the study used to examine what the medicines are doing in my bloodstream. Now my blood draws are just to check the usual suspects, like white counts, hemoglobin, etc.

Yesterday morning, I had a bone marrow biopsy performed just to extract some fluid for study purposes. I spent most of the day whacked out on the goofy juice and sleeping.

One of the pretty severe side effects of this drug is something called tumorlysis which is an adverse reaction in the kidneys to all the trash the dying cancer cells give off as the chemo does its thing. I've been pumped full of sodium bicarb and given prophylactic medicine to ward off tumorlysis. My potassium levels are checked regularly, as well as the pH of my urine, to detect any indication that my kidneys might be flipping out. So far so good. My numbers have all been normal. This morning my potassium was low, so they pulled me off the IV sodium bicarb and gave me two shots of liquid potassium to drink in some OJ. Gack. That stuff was nastified. Then just a few minutes ago, they took my blood pressure, noticed it was low, and have stuck me back on IV fluids to keep me from getting dehydrated.

The rest of my treatment regimen on this trial is simple. If all goes well, I should be going home tomorrow, and from there I continue to take these chemo pills three times a day, as well as some other stuff. I'll be back Monday afternoon for another admittance where I'll get the IV chemo again on Tuesday (No word if there will be more precision timed blood letting again.), followed by more watching, waiting, and pills. The point of these two weeks in the hospital is so that the study can collect data, and I can be monitored closely for side effects or problems related to the medicine. Next Friday, again if everything is hunky-dorey, I'll go back home. The third week is medicine-free, with clinic visits to monitor my progress and a bone marrow biopsy to see if this crap worked.

Now should this all work and kill off these effing stubborn Zombie Leukemia Cells enough to get me back on track for the bone marrow transplant, I made need some additional treatments just to keep me going until the transplant can take flight. But all subsequent treatments (IV chemo and the like) would be done on a outpatient basis. Crazy stuff, huh? Right now, I'm just bored stiff, nothing to do but hang out here in my little cell and bide my time.

Thanks to everyone who commented and sent well-wishes and such regarding our newest life dilemma. The righteous indignation was overwhelming. Thanks for getting pissed too. I'd love to address each comment individually when the time comes. We're working through some stuff right now, and Adrian's had some good job prospects come his way. It's not that the situation is less scary, but I'm trying each day to grow more positive and hopeful that the upheaval will bear forth better things for our family.

Right now all I want to do is go home and be with my boys.

And I can't believe bitchy, weepy, giant-chip-on-her-shoulder, insecure Kenley gets to move on to Fashion Week. But it's the first time since season two of Project Runway that a woman will win, and the only time it's been nothing but females in the top three. Hip! Hip!

The Hits Just Keep On Coming

2008-10-06T16:37:00.005-04:00

I am writing this from room 18, eighth floor of North Hospital, where I am starting my clinical trial. It's a brand new cocktail of chemo drugs my body hasn't encountered before, the logic being that the cancer will be taken by surprise and lay down and die. At least long enough to get back on the bone marrow transplant route. I'll be spending Monday through Friday here, and if all is well, sent home for the weekend. Then next Monday I'll be back here for another five days, out on the weekend. From there on out, it'll be clinic visits and such until the transplant process gets up and running. The drugs are in IV and pill form, and because of potential side effects, I'm being monitored pretty closely for the first few days of chemo. Today is my general admission stuff day, followed by some medicines to prevent side effects. I get the poison tomorrow. Goodie gumdrops.

No, seriously though, I really am hoping and praying that this is the right treatment for me right now. Having the bone marrow transplant yanked out from under my feet made me realize that for as much as I was dreading the process and side effects, I really do want to have the transplant. I NEED the transplant. If anything, this latest set back has helped me get over those fears and hesitations I did have about the bone marrow transplant. So over them.

So let's all raise some loud prayers that this treatment gets my stubborn, stupid Zombie Leukemia into remission.

Oh and one more thing, my husband got terminated from his job.

Yeah, awesome.

Breaks down like this: He gets a negative review, the first really negative review he's had in the seven years he's worked for this company. A few days later, he's pulled off of his contract, his place of employment since he started with the company. Then today in a nice tidy little meeting he was told he's being let go. Cool, huh? Way to stick it in and break it off, jerkfaces.

And yeah, I can write this because I AM NOT YOUR EFFING EMPLOYEE.

Because folks, although he never mentioned the name of his employer or the names of any of his fellow employees, my husband was terminated because of things about work he wrote on his personal blog. Not his job performance. Not how he worked with other people. Not his attitude. Not his skill level.

His personal blog.

So all you fellow bloggers out there, be vigilant regarding your company's policy on blogging. They may even have a policy you don't know about. Look it up. Seriously.

In fact, while you are at it, watch any and all conversations you have in public with people about your job because in essence that's what a blog is.

(Paragraphs regarding my gut feelings on the matter have been removed from this post by author. )

Let me reiterate that I have already requested if you are my husband's ex-employer you should cease and desist from reading my blog. Because I AM NOT YOUR EMPLOYEE.

We're still getting our arms wrapped around the notion that a company would fire a perfectly capable and hard-working employee for a few grumpy personal blog posts and what that means to us as a family right now. COBRA (no, not the G.I. Joe nemesis) should take care of insurance for a while, but my kid's gotta eat and bills gotta be paid and stuff like that. The Mister's buckling down for his job search, and for the first time in my life I am actually thinking of going on the dole, looking into the possibility of getting disability. 'Cause I sure can't get a job with all this going into the hospital nonsense and such.

So there you go.

My heart is not concerned. I believe that everything will work out in the long run. When you're in the weeds and crap is flying everywhere, it's hard to see the long-term effects a particularly nasty thing will have on your life. But after some time has passed, you see that what seemed a big ole fat mess in the moment was simply a stepping stone to something better. That and I believe in a Divine Plan. My experiences are, if nothing, a chance to learn more and to serve as a means by which I can better rely on God and reveal to others my personal faith.

But damn, can you give a girl a break once and while?

Here's the Deal-io

2008-09-30T08:16:00.002-04:00

As always, thanks to everyone for their thoughts and prayers. It was a well needed boost for my spirit.

After meeting with the head of the bone marrow team and my oncologist, I've got a little renewed hope. A little.

While its not good news that my leukemia didn't respond to conventional treatments, there are other options. There are chemo drugs that I haven't taken, the thought being that a new chemical will bust up the cancer instead the same old same old which hasn't gotten us very far. The clinical trial is still on the table and holds another promise.

The White Coat Folks are meeting this afternoon to discuss the various options and which one would be the most optimal in my situation. The leukemia needs to be in a remission state before the transplant can begin but beating the hell out of my body before then might not be helpful in the long run and jeopardize the transplant. They'll let me know if I'm going in for chemo on Wednesday or to start the clinical trial on Monday.

Whatever way we go, I'm still terrified that I have this evil, preternaturally strong cancer that isn't going to bow to modern medicine. A week ago, I dreaded the transplant and all that would come with it; now that the only hope I have for longer term recovery has been yanked out from underneath my feet, I'm pissed and want the transplant more than anything.

I'm just pissed. That sums it up.

Bad News Bear

2008-09-26T14:30:00.002-04:00

I knew it wasn't going to be a pleasant phone call when the actual head of the bone marrow unit rang me up this morning to disclose the results of yesterday's bone marrow biopsy.

Leukemia is still there. The chemo had no effect on it except probably pissing it off.

We are meeting with the BMT team this afternoon to discuss other treatments, including the aforementioned clinical trial. Without remission, the transplant is pretty much off the table. Without the transplant, I have less than 10 percent chance of surviving this thing.

So yeah, we're in a bad place right now. Not happy. Nope.

Listen Here

2008-09-25T20:59:00.005-04:00

I write this blog to keep my friends and family, both here and around the globe, updated on my health status and keep them current on general Clan Amos news. Occasionally, I ruminate on some random topic, babbling like a brook overflowing with my own nutty o-PINE-yun.

This blog should not serve those who are neither friend nor family and are mining for information that could mess with my Clan.

So if you are one of those individuals lurking about my blog looking for some dirt, I don't want you here. Go away. Piss off.

I'm not your employee.

My Spinal Tap

2008-09-22T20:53:00.006-04:00

Last Friday, as they often do in Cancerville Clinic, my doctor sprung an exciting procedure on me: a spinal tap! Yippee! While not as common with AML, some forms of leukemia have been known to reoccur in the spinal fluid; as a precautionary measure, my doc wanted to perform a spinal tap to check for blasts in the fluid and to inject a tiny amount of chemotherapy into the fluid as well.

Yeah buddy, I've literally got chemo on the brain. Accounts for all the weird-o dreams I've been having.

When the nurse practitioner started to get set up for the procedure, he said to me, "So you've had one of these before, right?" I shook my head.

"What did you do when you had your son?" (He's referring here to epidurals.)

I gave him my best raised eyebrow and cock-eyed smile that said, "Crazy Woman."

"Oh." The nurse practitioner now thinks I am the biggest badass ever.

The spinal tap was actually less invasive than my bone marrow biopsies, and I got to see what my spinal fluid looks like (Water. So boring.).

I am beginning to get addicted to being poked.

This Thursday I am being held hostage by the bone marrow team for more pre-transplant tests and yet ANOTHER bone marrow biopsy. Goodie gumdrops.

If all continues to go well with me and these test results, I will be locked up for my long stretch in the Big House on October 2. The day before I will be getting another port inserted in the left side of my chest. Yee Haw. More holes. On the second, I'll start my first of six full body radiation treatments, followed by intensive chemotherapy. Then I get my transplant. Basically, the bone marrow team will kill me, and it's up to me to raise myself from the dead.

Sweet.

So for now I am trying to have a good time and enjoy my freedom, my family, and feeling healthy. The White Coat Folks have me on so many antibiotics that I swear I could spit on a wound and heal it. One of the antibiotics is actually used to prevent and treat anthrax. Who's rockin' the preparedness now? Another of my pills cost $200 for a 30 day (twice a day) regimine. That's after my insurance company kicked in $2,000. Da-Amn. Here's a stock tip: Buy Pfizer.

After several days of looking like a possum with mange, I am shaving off what little hair I have left. Back to the cue ball look it is. At least for the next few months.

For any of you awesome readers out there in the RVA area, this Friday night we're getting together at Dominion Shooting Range for some firearm-assist therapy, followed by dinner at Capital Alehouse. I've been jonesin' to fill a couple of paper targets with lead before this crazy procedure. Feel free to come and join my motley crew.

Oh and one more thing, I reviewed my fourth book in Cannonball Read, the highly popular The Shack, and it's up on Pajiba. Here's a little hint: I hated it. Read at your own risk.

Book 3 of 100

2008-09-18T09:52:00.002-04:00

Apathy and Other Small Victories by Paul Neilan

Whenever I force The Mister to stop in the middle of reading whatever 19th Century seafaring novel he has in his hands so that I can read aloud a passage from my book, it usually means that my aforementioned book is pretty darn humorous. The more often I stop him is directly proportional to the book’s overall hilarity. Now when I can’t get through the passage I’m trying to read because I keep cracking up so bad the words coming out of my mouth sound something like “Ebid sheee. Iah. Ebid. Bwaw!”, well you get the picture.

Apathy and Other Small Victories did inspire a hysterical laughing fit at one particular scene, but not at every page’s turn. Still, it was otherwise amusing in a very above average sort of way.

Wanna know more? Slide on over to Pajiba.

Will Wonders Never Cease

2008-09-16T21:28:00.004-04:00

Due to the charming bacteria detected in my blood, I am now required to administer to myself an antibiotic twice daily through my line (a.k.a The Tubies). Now how, you might ask, does one administer medications through a central line without the aid of an IV pump and a trained nurse?

The Intermate Infusion System. Or the stunted baby bottle to your left.

It's pretty cool actually. When there's medicine in the bottle, the stem inside swells out. I hook it to one of my ports, unclamp the line connected to the bottle, and slowly the medicine is dispensed through some sort of gradual pressure release. It takes about an hour to get my full dose. And highly portable; tonight, I popped my bottle into my purse and went to Target.

Will wonders never cease.

I've been home since Saturday evening. My blood counts are climbing, and I am no longer neutropenic. Yee haw. Yesterday, Little A and I spent the morning and lunchtime frolicking at Cheswick Park where they have the best playground for the small ones and a great creek for rock throwing.

And my hair is falling out again. I figured it would happen sooner or later. My oncologist was actually surprised, considering the amount of chemo I've been through, that it grew back at all and with such speed. But if this last round hadn't knocked out my follicles, then the nuclear devastation reigned down on me before my bone marrow transplant would have most definitely turned me bald again. So here I go leaving little hairs everywhere. Not to mention my scalp itches like a somethinorother.

Today was a day-long meeting with the bone marrow folks full of consultations and more tests.
I've decided that a bone marrow transplant is akin to being killed and then having to raise oneself from the dead. Like a form of vampirism. My excitement will likely begin in the first few days of October when I'll start by getting another port (The bone marrow folks love their access points), and then a few days later, I'll begin my first of six full body radiation treatments. I keep asking people if all this radiation and chemo will endow me special abilities, but everyone keeps skirting the issue by grinning and chuckling. It's highly likely that they think I am joking.

One of the things a nurse told me today has been gnawing at me, not to mention the rather corpse like appearance of several other patients in the clinic. The nurse told me there are three conditions under which I will be released from the hospital post BMT: 1.) My white blood cells need to be at level of at least 1.0 which to give you perspective my current count after the last round of chemo is 1.7 and climbing. 2.) I'll need to be eating at least 1,000 calories a day (BMT patients not only lose their sense of taste but experience GI issues making eating unpleasant). 3.) I am mobile, up and walking around.

Okay, if those are the conditions of my release, God help me but what am I going to be like the three or four weeks after my transplant. A corpse, that's what. And I've got to raise myself up from the throes of death. Whooooooo. Just in time for Halloween.

This is going to be AWESOME.

Book 2 of 100

2008-09-12T08:30:00.004-04:00

Velvet Elvis: Repainting the Christian Faith by Rob Bell

The story of how I came upon this book is somewhat convoluted. Normally, I don't read a lot of religious books because to be honest I find a lot of them overly sentimental and treacly and frankly, not my thang. Another resident of LeukemiaTown told me about these spiritual shorts out on the 'net, called NOOMA. This guy swears by them and encouraged me to watch them. I cannot attest to the quality or power of these films because I am ashamed to admit I haven't seen a single one. Yeah, slackah.

The next day after our conversation I was in the bookstore looking for a gift to bring him. I thought, being that he is a churchin' dude, I'd see about finding him something with a more spiritual , devotional slant. As I glanced through the titles, this book caught my eye. Go check out the "Christian" shelves of your local book purveyor's religious section to see why a book with the words VELVET ELVIS in light mint against black is a standout. Intrigued, I pulled it out and flipped it over to read all the blurbies. Sure enough, there's the author, Rob Bell, who also happens to one of the individuals behind NOOMA. I bought a copy for my fellow LTown citizen and one for myself. It was too weird not to pass up.

Rob Bell is the founding pastor of Mars Hill Church, a megachurch in Michigan that meets in a coverted shoping mall. Rob also plays in a punk band. And he wears black framed nerd glassed. Awesome, I thought, A hipster Joel Osteen. Gak. Immediately, I was prepared to be annoyed by Bell just as I am annoyed by all those churches and their veneered, shuck-and-jive preachers.

Yeah, so totally wrong.

You know you want to read more; the rest of my review is up on Pajiba. Check it, one two, one two.

I'm Still Hanging. Yeah. Yeah. Yeah.

2008-09-11T22:43:00.004-04:00

Yup. Still sitting on my butt with some brain numbing HGTV show on in the background. I've had a much more positive day today. The highest my temp has gotten (so far, knock wood) has been around the 99 degrees ranch, which isn't high enough to set off the the alarms here. My second and third blood cultures aren't showing any bacteria growth which is a sign the antibiotics are doing a good job. Plus, my visitors today (Mr. Preacher Ken, Kim, and the one-two punch of The Mister and Little A) really lifted my spirits.

The big concern now is that my white cells will start bouncing back. I'm always edgy about how quickly my white cells come back online because that tends to indicate how successful the chemo treatment was in squashing those Stupid Leukemia Zombie Cells. My heart tells me to shut up that chattering bitch in my brain filling me with all these fears and simply lay these concerns before God. But she's a mean motor scooter with acrylics. I just need to get in her face and rip her weave out and throw it across the room. While she scampers for her hair, I'll knock her up side the head, subdue her, and wrap her up in duct tape.

Or I could pray a lot.

I've still got this demon of a headache, one of those face and sinus beauties that are worse when you move your head around. Evil gnomes have crawled into my brain area while I've slept and now hammer relentlessly with ball peen hammers on the inside of my skull. Fortunately, Nurse Awesomeness is looking out for me tonight, and she's got the good drugs. Right now, those bastard gnomes are knocked out cold.

Lucy got to come home tonight. Her upper respiratory issue has almost completely disappeared,but she'll be required to take a number of pills for a while. She nibbled on her food in the dish a bit, but we'll still syringe feed her until she is comfortable eating on her own. Her reunion with the home was a loving one. Nervous-pervis, shypants Lucy even let Little A love on her a bit. Thanks to everyone who sent prayers and supplications on behalf of my sweet girl. I'm so glad she made it through this.

For those of you following the Cannonball Read, Prisco and I are also crossposting our reviews at my internet treehouse fort, Pajiba. I want to send a wee bit of traffic their way because it's a great site and an even more fabulous community of folk who've been a phenomenal support for me during my crazy cancer phase. So if you love pop culture, movies, television, books, and being super-snarky and have no fear of comment threads that often diverge down some, um, interesting paths, stop by Pajiba, check out our reviews, and support the site. Hopefully, I'll have something up from my second book tomorrow. It was a heavy (mentally not lbs) read, and I need some time to pin down my thoughts.

Life is a highway. I wanna ride it all night long.

Book 1 of 100: The Haunted Looking Glass ed. by Edward Gorey

2008-09-11T05:10:00.004-04:00

While it may appear to the casual viewer that Prisco (Mr. Five books. Shah.) is owning my ass in this race, it simply isn't true. I've just been a febrile mess lately and couldn't be bothered to write anything about my reads. If anyone is currently keeping count, I am tearing through book four.

So there.

Prisco chose a sci-fi writer's self-help tome to be his first read. I pick a collection of old fashioned ghost stories edited by Edward Gorey. I'm sure this has deeper meaning.

Edward Gorey was one of those artists/famous people that I dreamed of one day meeting. I love his ability to take the macabre and twisted (The Curious Sofa, anyone?) and make them elegant and just a wee bit quaint. However, I am glad I never got the chance to share a drink with the man, as I am sure he would have thought me a ninny, and I would have learned some horrible truth about him, like his bad dental hygiene or that he was a raging misogynist (Neither of which I know to be true. I'm just speculating here, people.).

The Haunted Looking Glass does much maintain his place of adoration my heart. Gorey selected twelve (Oh, why not thirteen!) old-fashioned ghost stories such masters of the craft as Robert Louis Stevenson, Bram Stoker, Charles Dickens, and the godfather of the Gothic novel, Wilkie Collins. All of the stories are traditional chillers with haunted houses, premonitory visions, and vengeful spirits. There's no blood or gore. No vampires or evil clowns. Just a tidy collection of things that go bump in the night and leave you with a chill up your spine. And not only did Gorey have a hand in selecting the stories, but he also provides illustrations for the title page of each.

While some of the stories play out as slightly dated, there were definitely a few standouts with a strong creep factor. "The Empty House" by Algernon Blackwood is a tightly wound telling of a man and his elderly aunt's visit to a supposed haunted house. Their journey through the vacant house and what they encounter was far more effective at illiciting the eebie-jeebies from me than any of those "supernatural"television shows where people wander around old buildings using night vision cameras and exclaiming, "What was that?".

The most effectively creepy story came from none other than Bram Stoker. "The Judge's House" has to be the first time I've read a story and wanted to shout at the main character, like people do in bad horror films. A student rents an old house as a retreat to complete his studies, and very quickly encounters the infestation of rats in the wainscoting. Yeah, my ass would have been at the Days Inn five seconds after the first pair of beady little eyes peered out of the woodwork, but the unfortunately stubborn student continues to stay in the house. Stoker makes the skin crawl with this tale of haunting by rodents.

Gorey wisely chose to include the ever-frightening "The Monkey's Paw" by W.W. Jacobs. If you've never read this classic, you absolutely need to. Right now. All I can say is that it's the best illustration of how readers' imaginations sometimes can do all necessary work; a writer just has to give them the right tasty little morsel to set that machine in motion.

M.R. James' "Casting The Runes" rounds out the lot as the one story that felt the most "modern". It is a well-paced tale of a man attempting to crawl out from underneath a hex from a bitter, self-described alchemist whose badly written paper the hexed man made the mistake of giving a negative review. Be careful what you write in those Amazon customer reviews.

The Haunted Looking Glass certainly didn't terrify me to the point of needing to sleep with the light on. There's only been one book with that kind of power over me, Ghost Story by Peter Straub. But it was darn good for a little shiver before bedtime.

Room 38 redux

2008-09-09T22:19:00.003-04:00

You might have heard that I am back in the slammer. I woke up Monday with a fever and got readmitted. For the past two days, I've been running and breaking fevers in excess of 103 degrees. Yeah, it's been fun. According to my blood cultures, this time around I actual have a bacteria growing in my blood, so this isn't your typical neutropenic fever. The White Coat Folks have got me on a plethora of antibiotics trying to kill whatever is troubling me.

So pardon my general absence from the interwebbies. Having high fevers sucks the life out of you. All I've wanted to do is lie in bed and stare into space or watch cable TV.

And to top all of this off, poor Lucy, our sweet black cat, had to be taken to the veterinary's office for overnight treatment. Her cold wasn't getting better, and she really hadn't eaten in days. When Adrian took her into the docs, she was dehydrated and showing signs of possible liver damage. She has been making a slow recovery, but she's still not out of the water. Please keep my darling girl in your prayers.

Get up, Stand up

2008-09-05T16:22:00.003-04:00

Because I know you're not doing anything else tonight, you will be parking your butt down in front of one of the three major networks at 8 p.m. to watch the Stand Up to Cancer telethon. It's quite a groundbreaking fundraiser, the first of its kind that isn't related to large-scale disaster relief. The real dirty warfare of fighting cancer is in research and development, and R&D takes money. The business of getting better ain't cheap. So the folks behind Stand Up to Cancer are hoping that they will inspire a lot of people to dig deep for a seriously admirable cause.

It hasn't been that long since a cancer diagnosis meant certain and swift death. Even within my own lifetime, leukemia went from a stone cold killer to a formidable enemy who could be bested. All of these strides have been made by learning, poking, prodding, and questioning this disease. And in order to turn cancer an inconvenience, the White Coats Folks need to keep up that poking and prodding.

So please watch and support with some cash if you can.

The first I heard about Stand Up to Cancer was a commercial that ran before The Dark Knight. It featured a number of celebrities, including Keanu Reeves. I'm thinking that with Keanu Reeves on my side, I'm definitely beating this. Keanu and God. The invincible team...

Oh and I'm just fine. Blood counts are dropping. Got platelets today in the Cancerville Clinic, and come Monday will probably need more blood products. I've also got a battery of tests this week to see if I'm okay for a bone marrow transplant. Let's hope I can finally dodge the neutropenic fever this week and stay out of the Big House for as long as possible.

Lucy the cat is getting better thanks to medicene. She's not as oozy as she was, but her appitite is still low because her sense of smell is all wacked out.

Off to batten down the hatches as we prepare for whatever degree of fresh hell Hanna has to toss our way.

In case you wanted to know

2008-09-01T22:37:00.006-04:00

I'm home. I wish I could say that I am thrilled to be home and feeling so well after five days of being pumped full of chemotherapy. But alas, I cannot.

I feel like poo. Actually, intermittently like poo. There are periods where I feel sort of okay. Then I feel like poo. Tired, woozy mostly. There are times when simply sitting taxes me. I've got lingering indigestion. My sinuses are flaring up and causing post-nasal drip. My muscles ache, to the touch even, making it hard to sleep well. Then there's my lingering menstrual issues that could become cataclysmic again once my blood counts drop.

My intention after this round of poison was to stay rested and hydrated and do my best to take care of myself and possibly avoid any other hospitalizations between now and my bone marrow transplant days.

Were I so lucky.

I've got a sick, snotty cat whose dried snot is all over the sofa. Plus a snotty toddler who threw up twice during dinner tonight. Yum. And here I am with a weakened immune system. Infections, even ones as small as upper respiratory, have the potential to create huge issues with my treatment.

Tomorrow, I get to spend the morning in Cancerville Clinic.

So excuse me if I'm a little crabby.

I had really hoped to do as good a job as Prisco did, hyping up our little wager, but I need my sleep. Especially if I am going to kick his ass with this book race thing we've got going on.

It's totally on. I have many things to live for in this world, namely my wonderful and beautiful family. Beating Prisco's bald, fat butt by reading 100 books first is just going to add a big old thermonuclear jump start to my getting through this cancer mess.

So I start with a few ghost stories.

Any other recommendations?

Today is my husband's birthday

2008-08-28T18:23:00.005-04:00

The picture at left is my current view from the Big House. If the image looks a little grey, wet, and bleary it's because for the past two days, RVA has received significant amounts of moisture from the sky. Some would call it rain. Quite a darn lot of rain.

Praise God and pass the biscuits.

The building in the right portion of the picture is one of my favorite here on the MCV/VCU campus, maybe even in Richmond. It's the Egyptian Building, one of the older remaining on campus (Built in the 1920's, I think.). My snapshot does it little justice, but were my webcam a wee bit fancier, you be able to make out the fact that even the posts in the iron fence around the building have a lovely Egyptian shape to them. Man, they just don't make them like they used to.

What you probably can't make out, at the bottom of the picture, is the chaos of valet parking right in front of the Cancerville Clinic. There's the older gentleman valet who always gets the thankless job of helping direct the clueless goofballs through the intersection. Today, bless his heart, he was out there in the pouring rain in a bright blue poncho just waiving the cars along.

Also not quite visible in the photo, from lousy photo quality and grey haze, far in the background, beyond the tree line is the lovely James River. Maybe we're not a fancypants metropolis like New York or Chicago, but darn it, this is a pretty little city.

So life here in the Big House has been fairly uneventful. First night was pretty sleepless (Not as though I can get a full 8 hours in here anyway.), but I am making it up with some quality nap time. Today I actually crashed out for about two hours.

There are two prisoners from our illustrious city jail on the hall, possibly a third (I suspect from a county jail because his minder is dressed more like a sheriff-type.). The zombie warrior in me is somewhat relieved to know that there are a few fellows on the hall packing heat. Should there be a sudden swelling of undead masses in the hallway, hopefully these three will be able to hold them off long enough for me to make a break for the stairs, dragging Cletus along behind me.

One of the nurses told me that walking the length of the hallways on the floor eight times equals a mile. This gives me a goal on my daily strolls, and I think I might just attempt two miles today.

As you have probably already ascertained, today is The Mister's birthday. He was hoping to take Little A to King's (Demiff) Dominion for the evening, but the day's soaking rains kind of put the kibosh on that idea. They did stop by this afternoon for a little celebration and decadent chocolate ganache cake, provided by my mom and Fresh Market. While the rain isn't what he expected for a birthday treat, The Mister conceded that Richmond needed the rain more than he needed a trip to KD. Besides, I believe the consolation prize is a trip to the G-Force Go Karts tonight. Papa A races and Little A is his gleeful audience.

And to save the best for last, we got word today from the bone marrow team that a donor has been located. It's not a perfect match, more like a 9.5 to 10 point match thanks to my rare antigen. But it's a good enough fit for the doctors to want to progress further. There are a few more pieces left to fall into the puzzle. This donor has some further screenings to complete to make sure he/she is still a viable candidate health-wise (Meaning no syphilis or AIDS or other such yummy stuff), as well as agree to complete the process necessary to donate stem cells. I of course have to get my cancerous ass into remission and complete some of my own health screenings to determine that I am in a good way, besides the leukemia, to participate in the transplant.

If all the stars align, we'll be looking at the end of September to fire up the transplant train and get that sucker rolling out of the station.

Thanks to everyone for their prayers, positive thoughts, intercessions, meditations, and otherwise all manners of good juju that has been sent my way. Looks like you guys are a mighty powerful lobby; keep it up.

I am not above admitting that the transplant scares the living bajeebers out of me. But like the Good Book says:

I have set the Lord always before me.
Because he is at my right hand,
I will not be shaken.

Psalms 16:8

Happy birthday, my beloved!

Room Number 38

2008-08-26T14:01:00.002-04:00

I'm here. Hanging out with the nurses. Watching cable. Catching up on e-mails and my bazillion Facebook messages. Waiting for this slow poke system to kick in so I can get my daggone chemo. I got up here on the sixth floor around 10 a.m. but I won't get my juice until around 6 p.m. tonight. Kablewy.

Really I need not complain. This is time without being hooked up to my perpetual buddy, Cletus the IV Stand.

So this regimen lasts five days, and if all goes well, I'll get kicked out sometime on Saturday.

Later today, I'll snap a few pix of my new view of street and lovely buildings. My room's a little on the small side, but I've got a little foyer area that cuts out noise and a large, freshly tiled bathroom.

My mom and Little A came by for lunch and brought me a nice bucket of goodies and sugar-based comforts. Little A had gotten pretty comfortable with hanging at the hospital, except after about an hour, he started asking, "Are we going home now?" He brought with him some new car toys and my old stuffed Garfield. Odd, I never thought that I'd see my own child playing with my old toys.

Thanks everyone for the positive comments and messages. Your love and kindness has become my life raft in these choppy waters.

Peace out from the Big House, cell 38.

Back in the Saddle Again

2008-08-25T22:25:00.005-04:00

Tomorrow morning, I am off to the Big House for another round of FLAG, which, if you recall, was the same chemical cocktail I got in my second round of induction therapy that pushed the Zombie Leukemia Cells into remission for a short time. We're hoping that lightening will strike twice and knock those suckers back a few paces, at least until we can get the bone marrow train rolling.

If my memory serves correct (and I am sure I can look back over past posts to see what I pissed and moaned about at the time), my worst side effects from FLAG were excruciating heartburn and skin issues (When do I not have skin issues?). And I will more than likely lose what little hair I've grown back. Plus, my doctor prescribed super strong antibiotics as part of my aftercare which included the infamous Liquid Gold.

I have high hopes about what I want to get done during my incarceration, namely to finish this big ole long book I've been reading forever and get more Thank You notes written. We'll see how that goes.

The Mister and I had a nice dinner and date night tonight. Apparently some time during the movie, it started raining. Lord have mercy. We have a theory that God finally granted us rain because Adrian pulled a random drawer out of the middle of Parham Road this afternoon. You know like Noah and the flood. Except different. Sort of.

Whatever. Tropic Thunder was pretty dang funny due in large part to Robert Downey Jr., Danny McBride, and *shudder* Tom Cruise.

I'll check in with the world when I finally get settled into my new cell.

Until then (and for you non-Pajiban readers out there), here's some fun claymation. If I ever have to hire a domestic, I will definitely ask about their skills with power tools.

An Open Letter to Florida

2008-08-24T23:28:00.004-04:00

Dear Florida:

We understand that recently your state has received an exceedingly large amount of rainfall. As moisture falling from the sky has become quite the rare phenomenon here in the Old Dominion, we were wondering if you'd be amenable to the notion of sharing some of your rain with us up here in the Midatlantic region.

Currently we are asking our citizens to hold off on washing their cars, watering their lawns, flushing their toilets, or running across the grass, lest the foliage ignite.

Any amount of rainfall that you would be willing to part with would be accepted with heartfelt gratitude and open but very dry and flaky arms.

Much Thanks,

Your Fellow State in the Union- Virginia

Step to the Beat, y'all

2008-08-21T21:15:00.005-04:00

I'd love to relay in sordid detail the 30-second beat down between two teenage boys that I witnessed at the end of my street whilst getting my mail yesterday. However, I am woefully behind on my e-mailing. It's positively pathetic. Tonight I am going to try and catch up on all my unanswered e-mails.

So, I'll leave you with a few things to munch on until next I post something of interest.

I've been writing for a few other blogs lately. Check them out here and here.

Despite being an only child, I love to share, especially when a song gets stuck in my head. If you've been watching the Olympics, you'll probably recognize it.

And here's enough cuteness to crash your computer.

As a parent, you hope that your child will come to love or at least appreciate the same things you do. After our visit to King's Dominion on Sunday, I'm delighted to report that Little A is blossoming into a bona fide thrill seeker. Long may he ride roller coasters with Mommy and Daddy.

Gnu Gnews

2008-08-19T21:54:00.005-04:00

My husband is doing a better job of relaying information through his blog posts. He relays information quicker and in a clearer fashion because he actually listens during these meetings with the White Coat folks. My mind is constantly running ahead to the What's Next and What Does This Mean. It's not that I am not listening, but I tend to remember less of the details after all is said and done.

What the Mister didn't get after leaving the meeting is that the clinical trial would be a continuous cycle of treatment of ten days in hospital followed by a rest week and then another ten days of hospitalization. This pattern would continue until the clinical trial folks were satisfied with my overall health. Not to mention that the course of treatment and follow up is more intensive because it is research-based. I'd be poked and prodded at a greater rate than my previous experiences. These medicines are relatively new and untested, so who knows what effects they will have on my body overall.

The study nurse also warned me that as of yet in the course of the study (3 years) no patient has gone into remission. They were however able to get several patients ready for bone marrow transplant which is the direction I am moving.

After the meeting, I had a bit to chew on mentally. Automatically, I prayed for wisdom and guidance. Last thing this girlie wanted to do is eff up her treatment with a wrong decision.

I've decided to stick with a familiar chemo routine, putting the clinical trial on the back burner as a potential treatment down the road should I need it. There are several practical considerations involved in my decision, namely we simply don't have the resources available right now to handle Little A's care during the time needed to be involved in the clinical trial. They'd want me to start the trial in a week which doesn't give us a whole lot of room to coordinate proper child care. Sure we could slap together a rotating schedule of folks to watch Little A, but I'd prefer not to push him into a whirlwind that would only upset his little heart after so many good weeks. Plus, for all the work involved in participating in a trial, there's no assurance that it will push me into a full remission.

I'd love to participate in a trial that eventually might assist in future successes of cancer patients. But the time isn't right for me nor my family. Friday, I'll be meeting with my oncologist to chat about what is next for me.

Today I got an interesting phone call from the bone marrow folks. They want to move the train along and get me in for a series of pre-tests to determine my overall health and eligibility for transfer. The coordinator told me there were two donor situations that I and my doctors will need to consider: a near match from an adult donor or cord blood. I can only assume that the transplant is nigh. Sooner than later, I hope.

I don't know what this means for my schedule of treatment, but perhaps my choice to forgo the clinical trials might work out for the best.

On a more random note, the other night at the grocery store, Adrian and I saw a lady gliding down the aisle using her head scarf (Please someone tell me what the technical name of the Muslim headscarf is; I know it has one.) as a hands free tool for her cell phone. I kid you not, she had that hot pink Razr crammed into her scarf just chatting away. It was surreal.

Today as I left the post office, I noticed a vehicle with a round sticker on its gas cap cover that read "Gas Prices Suck". Yeah well, doofus, if you didn't drive a Yukon then maybe the price of gas wouldn't suck so bad. Doofus.

I am Wolverine

2008-08-14T13:31:00.007-04:00

First off guys, thanks for all the support. I can't say that enough. This blog sometimes functions as the wheel on which I can spin a hunk of my thoughts and emotions. I spin that hunk of clay for a while in my head and then with my husband and then through my keyboard. After a while my feelings take shape, I fire that puppy, and slap it on the shelf. The more lumpy, lopsided, negative thoughts I eventually yank down and smash to bits, but I feel like I've got to pull those hunks of grouchiness out and work through them otherwise they gum up the works. Otherwise, I'm stuck with a heart full of oogy stuff.

It's amazing how a bunch of comments from friends, many of them people I've never met in the wetware world, can lift me up over the dark waters. My situation may have remained the same (poopy), but at least I am facing it with my lopsided grin and a renewed sense of Zombie Warrior bitchiness.

Secondly, I think I am Wolverine, save for the retracting claws, scads of body hair, cigar chomping, and Canadianess. So maybe I'm more like Wolverine's distant cousin..

My hair is coming back and at a pretty quick pace. It's about 1/3 to 1/2 an inch all around. We're not sure so far if it looks any different from the hair I used to have. My mom thinks it looks darker, but The Mister is not convinced. I have seen a bit of a reddish sheen in certain light. Here I am regenerating at a snappy pace.

Then yesterday before my bone marrow biopsy (number 7!), I again warned the pathologists that I am hard of bone and that previous pathologists have had a bit of a struggle getting through. During the procedure, the resident had to let the attending take over to complete the puncture of my hip. She could not quite get enough muscle behind the needle. She jokingly chided me to "lay off the calcium". I'm not sure if he was teasing me or not, but the attending also chided me. For bending the tip of his needle.

Bones of steel, bub.

Back So Soon?

2008-08-13T09:14:00.003-04:00

Yesterday I went into the Cancerville Clinic expecting to chat with my doc about the next round of consolidation chemo. Instead, I got some less than thrilling news. An unusual blast cell was spotted in my bloodwork which indicates the leukemia's back and remission is over. This morning I'm having a bone marrow biopsy to confirm and the results will be available Friday.

This news is difficult for several reasons. Not only has the cancer returned quickly, but because I have the super-duper meaniepants version of AML, whenever the cancer comes back after chemo, it is something of a wasp. It's been swatted and now it's pissed. The cancer is smarter and stronger and less likely to respond to conventional chemo.

On top of that, this return doesn't help my chances of success with the bone marrow transplant. Going into a BMT after a second remission reduces my five year survival rate, and when the survival rate is 20% after the first remission, this reduction is significant. I go from not so hot chances to craptastic chances. Should the docs prove unable to put my leukemia into remission, a BMT is off the table. Doing a transplant on active leukemia is just a waste of time for everyone.

Needless to say, I've been brewing some pretty dark thoughts over the past 24 hours. I'm just about tapped out of energy to stay focused and hopeful in light of this new development. My realistic side can't help but think of my ever diminishing chances and being just another one of the faceless many who succumb to AML. But for Little A's sake I have to focus on being one of the select few with the golden tale to tell, the human interest story worthy of a 60 second Olympic broadcast spot.

Ultimately, my fate is not in my hands, but I can sure as shit push through with the determination of a Jason Lezak powering through the last leg of the relay against those asshat French swimmers.

Last night, one of the little songs we used to sing at church camp popped into my head, and I've been rolling it around in my brain to soothe and strengthen my spirit:

Those who walk with the Lord
Shall renew their strength
They shall walk upon wings
Like eagles

They shall run and not grow weary
They shall walk and not faint
Help us Lord
Help us Lord
In thy way.

Slackah Girl but Agent of Chaos nonetheless

2008-08-11T21:30:00.014-04:00

I've learned that since my move to LeukemiaTown my blog posts are fewer and far between during my "normal" periods-those days and weeks when I feel good and have higher energy levels. (My e-mailing habits also take a knock; there are an embarrassingly high number of unanswered messages in my in box. Sorry guys; I'm working on it.) These last two weeks or so have been great. My counts have continued to climb to almost healthy people levels, and I can definitely feel the difference. Of course here in LeukemiaTown whenever you start feeling better, that means another stint in the Big House for more chemotastic action.

Enough of that business; I'll post later this week after my doc visit to let everyone know the latest on the cancer front. Until then here's some of what I've been up to in my so-called normal life.

Let's start with The Bat.

Two weeks ago, I finally got out to see The Dark Knight. Yeah, it was good. Since I am a lazy butt and haven't ordered my MurderTank t-shirt, I work my Pajiba Bust(ted) Tour shirt in honor of my comrades in film fandom. The girl at the ticket counter first asked The Mister and I if we were students (Hee!), and then told me enthusiastically that she "really liked my hair." Honestly, she was so sweet and sincere that I didn't have the heart to tell her my stylist was chemotherapy. It's a little heartening to think that I don't look baldy sick, but that I could pass for somebody with a bold summer style. My 'do sort of resembles GI Jane or Natalie Portman's look at the end of V For Vendetta.

Back to Batman; First the trailers: The Watchmen looks promising; my hopes are up, considering how much I adore the balls-out craziness of 300. Zack Snyder better deliver. I sincerely hope that Tropic Thunder is as hysterical as the trailer makes it look. I almost don't want to see it just to avoid the possibility of disappointment. The new Terminator movie? Huh. Not much to say there except ooooh, Christian Bale. Shiny, pretty! And then a remake of an alien movie with Keanu "My Boyfriend" Reeves. Shah, catch that one on Netflix.

From the very beginning, The Dark Knight proved itself to be a near pitch-perfect comic book movie. The opening bank heist sequence felt like it was lifted straight from the pages of a comic; I half expected to see a title page pop up as we watched the getaway bus cruise into the horizon. Story and character arc moved seamlessly from the previous film. Bruce/Batman has cooled some of his vengeance fury and is showing signs of weariness. When he's given the opportunity to hang up the bat ears, it doesn't seem like a hard call for him to make.

The meditation on the nature of revenge and justice from Batman Begins has evolved in The Dark Knight into an examination of the nature of a hero, how what the people want from a savior and what the people need are often far from the same. These themes mirror what has been bandied about for years in the Batman books: his status as both the scapegoat and the protector of Gotham. The movie definitely warrants a second viewing to ingest everything it is trying to say, much like a good, well-written comic has so much more than a straightforward, good guy versus bad guy plot and requires repeated readings

The action sequences were well balanced; none, save the helicopter stunt, veered into Michael Bayesque diarrhea of explosions and wildly unbelievable twisting of physics. What the F/X guys were able to accomplish with a lone tractor trailer was nothing short of insane. Goodness gracious, do I want a Batpod.

Acting was top notch all around, from the principles to the supporting actors. Bales was great, as usual; he's to the Batman franchise what Daniel Craig is to that dusty old British agent. A serious shot in the arm of fresh blood. Gary Oldman terrifies me with his talent; he's one of the few working in films today who can portray whacked-out insanity and normal, quiet decency with equal honesty. The only contemporary actor that comes close to his abilities is Cillian Murphy (who incidentally pops up in a cameo to continue The Scarecrow's storyline.). Rachel Dawes may be one of those throwaway roles, but at least Maggie Gyllenhaal turned in a better performace by far than Ms. Stroke Victim Holmes. Michael Caine is smacktacular as always.

I can't think of what to say about The Joker that hasn't already been written about by critics ad naseum. What struck me the most about Ledger's performance was the fact that I never saw Ledger. It wasn't just the makeup and the weird-o voice, but it the hunched, squirmy posture and all the oily little bits of business, like sucking on the cheeks, that made this actor-devouring performance. The bit with the hand sanitizer coming out of the hospital room cracked my ass up; I think there were people in the theater who were laughing because of how hard I was cackling. Ledger's the first Joker to capture what the Joker has always been about in the books: a maniacally joyful criminal who revels in chaos for its sheer entertainment. Sad for the movie world to have lost such an incredible talent.

The film wasn't without its flaws and disappointments. Like others have expressed, I found Bale's BatVoice too overly gruff at times. The editing in some of the fight scenes was too frenetic for my tastes. Finally, I wasn't thrilled with the way Two-Face's subplot was handled. I was surprised that the filmmakers chose to complete his story in this one film; I would have preferred that they had kept the character's fate more open-ended so as to continue in future films. Two-Face's face itself was perplexing and somewhat overdone. The Mister and I both thought that there would be two major issues with facial injuries of such an extreme nature: big, ole narsty drooling and serious dry-eye, not to mention major risk of infection. Or maybe we should have suspended our disbelief just a smidge more.

All that aside, the Bat satisfied.

More of my adventure goodnessto come. Up next, Little A's summertime fun, Sun, sand, and bouncy castles.

Warriors! Come out and plaaaaaaaaaay!

2008-07-29T21:08:00.004-04:00

I love swanky baby and kids' catalogs. The pages are filled with exorbitantly priced clothing, toys, and ephemera that every McMansion Mommy will want to have for her precious little Madison or Jacob. Sure enough, some of the clothes are pretty freaking cool, and we have been known to splurge on a few things for Little A from BabyGap or Janie & Jack. But there's no way in clear blue hell I am buying my kid a $94 pirate costume when we could throw the same thing together for free out of Mom and Dad's old Halloween digs.

Which brings me to Chasing Fireflies, one of the aforementioned swanky purveyor of children's goods. Flipping through one of their catalogs, I spied this awesome t-shirt.

It's the freaking Warriors, people! Holy smokes, how bad do I want this for Little A? Were it not for the fact that it retails at $44, he'd be wearing it right now.

Now, if you don't run with the Warriors, you can give a shout to your homies, the Brooklyn Furies.
Or the Delancy Hi-Hats.

For the uninitiated, The Warriors is a great Seventies cult flick about gang wars between various rather interestingly costumed fictional gangs in New York. It's all kind of awesome in a 3 a.m. on HBO kind of way.

Now, I'm not entirely unsure after reading the product description of the t-shirt that the Chasing Fireflies folks are totally ignorant of their merchandise's source material. But those McMansion Mommies? Can they dig it?

Out of the Clink

2008-07-27T21:14:00.003-04:00

Yup, they let me out Saturday. One of the criteria for release after neutropenic fevers is a total neutrophil count of 500 or greater(Y'all remember what neutrophils are, right?). On Friday, my count was 400, and the doc was predicting I'd go home Saturday. After my blood draw Saturday morning, my total count had rocketed to 1400. Boo-ya.

Guess who's no longer neutropenic? Guess who's going to see The Dark Knight this week?

After two units of platelets, my menstruation situation turned from horrorshow into a slow and gentle stream. Now if said stream would just dry up; apparently this is shaping up to becoming the longest and bloodiest battle ever waged in my womb (Aside from Little A's entrance into the world). All it took to rectify this situation was minor hysterics on the part of a great nurse and one slightly terrified intern being lectured by a slightly furious bald woman.

My sore throat is slowly abating. My voice is back to normal, but eating certain foods still exacerbates it. The sinus thing seems only to bug me in the morning.

Back to clinic visits and days with Little A and the dread of more chemo looming over my near future. Thanks for sticking with me.

Back in the Slammer

2008-07-24T16:03:00.008-04:00

First, thanks to all my fabulous peeps for your comments of encouragement. It's nice to be surrounded by so much love and support; it buoys me along on this harsh sea.

Anyway, Wednesday at Cancerville Clinic, the white coat folks discovered I'd violated my parole. I was had a fever of 101, what we like to refer to here in Cancerville as a neutropenic fever. My butt has been tossed back onto the Sixth Floor to endure the usual drill of tests to figure out if I have an infection. So far I haven't heard any results from the tests, but after spiking up around 102 and then breaking sometime early this morning, my temps remained fairly normal.

Yet, as with most of my trips to the Big House, my health problems seem to magnify. What started out on Monday as a scratchy throat and a sinus headache has developed into a full-blown mess of pain. My throat is so raw and scratchy that I can hardly speak above a whisper and my sinus pain has transformed into an intense earache. And the pain medication they are giving me only takes the edge off of my discomfort.

To top it off (and in the fine tradition of my new LeukemiaTown oversharing), I have been hit with an apocalyptic menstruation. Never before have I witness this much blood leaving my body and it scares the bejeebers out of me, and the docs (who coincidentally are mostly male) don't seem to be much concerned about this. Here I am getting blood transfusions, all the while blood is beating a hasty path out the fire exit. Seems like a bit of a waste, no? If this flood doesn't taper off soon, I'm looking at sleeping in an adult diaper to avoid wallering in a blood-soaking bed.

Good times. I'm taking a nap.

It's a long hard road, but I'm gonna get there.

2008-07-21T15:51:00.006-04:00

Yeah, I'm a big butt lazypants with regards to updating the blog. I've been home from the Big House for over a week. Slowly my blood counts have been plummeting. My energy levels wax and wane pretty quickly. I'm neutropenic again. Three times a week, I hang out in Cancerville to get lab work done and have any transfusions I need. The rest of my time is spent trying to rest, stay cool, and have as much of a blast with Little A as possible. In the just the past week, we took an exciting walk through the woods in our rainboots and watched The Muppet Movie.

One of the big reasons I've not posted this week is my reluctance to discuss the huge elephant in the room: bone marrow transplant. Since my meeting with the BMT team at the beginning of the month, I've gotten about 20 pounds of literature about the process. Needless to say, that kind of volume of information can overwhelm a gal. The one big impression I've gleaned from all this reading is that the bone marrow transplant process is going to suck. Big time. Unfortunately, it's the best possible treatment for my subtype of AML, which, with chemo only, will return and will be more aggressive upon it's return. My leukemia would most certainly be the death of me if untreated or treated improperly. On the other hand, I could die as a result of the bone marrow transplant. Totally not cool. It's not a cure for AML; remember I've got cancer not polio. Still, I consider it the strongest course of treatment to buy me more time on this earth. So them's the facts, and I've got to put on my big girl panties and take my medicine.

Basically, the best metaphor I could think of for a bone marrow transplant is from Ender's Game. It's like wiping out the bugger race and then sending in human colonists to live in the abandoned bugger settlements.

See, the transplant process breaks down like this: Once a donor is found and coordination for the marrow harvesting completed, my butt is tossed back in The Big House. First, my body will undergo radiation treatments twice a day for six days, followed by two days of chemo. The real serious bitchass side effects will come from this treatment. The radiation/chemo cocktail will seriously inflame my mouth, throat, and GI tract, making eating unpleasant and difficult. My diet will be kept strictly bland for this purpose, and if it becomes necessary, IV nutrition will become part of my treatment. My energy levels will crash and burn. Rashes are a common side effect, and so because my skin is already super rash-prone, I'll probably end up looking like Miss Hiroshima 1945.

Once the site has been thoroughly nuked from orbit, just to be safe, I'll get my transplant. It'll go down a lot like a regular blood transfusion. From there it's a waiting game. Waiting to see if the new cells graft properly. My immune system will be trash at this point, so my risk of infection is doubly high. The White Coat Folks will have me on a myriad of drugs to prevent infection, as well as to manage any graft-versus-host issues that arise. Just like any transplant patient, I'm at risk for rejection. My new immune system will more than likely attack it's new host body in some way, shape, or form. The drugs will hopefully manage the severity of the attacks, and from what I've read, a mild case of GVH is a good thing. One of the more common GVH symptoms is a skin rash. AWESOME.

This stint in the hospital will take a month at least, if I don't develop serious complications from the transplant that would necessitate a longer stay. I'll be able to have visitors, just no sick ones. I'll be completely confined to my room. In other words, the best four weeks of my life.

Once I'm deemed okay enough to go home, I'll need a full-time caregiver. For the first few months, I'll have daily clinic visits and multiple transfusions. My medicinal routine will be quite extensive. I will more than likely run high fevers and need hospitalizations. There will be strict neutropenic precautions to follow-no fresh fruits or vegetables, no "dirty" chores, no contact with the cats, no cooking that involves raw foods. I'll be mostly confined to the house, no visiting places with large groups of people, and if I want to take a stroll around the block, I've got to mask up. Anyone coming in frequent contact with me will need to get a flu shot.

This semi-seclusion will last anywhere from six to nine months, followed by a slow reintroduction into the germy wide world. I'll still be monitored pretty closely to make sure my new immune system is grafting properly. Still taking a crapload of pills. There will also be monthly bone marrow biopsies to make sure my transplant also kicked out the leukemia. I'll need to get all of my baby vaccines again.

For the next year to year-and-a-half, my life will suck. There is a strong possibility I could get super-duper sick from the BMT. GVH could kick my ass in all kinds of crazy ways. I could also suffer long term side effects from the radiation like thyroid issues or other cancers such as skin or mouth. (Unfortunately, I won't get any keen powers from all that radiation. I was really looking forward to being able to blow stuff up with my mind or something to that effect.)

This is the giant white wall that has been thrown down into my path. I can't see around it or over it to the other side. I have no idea whether or not the treatment will be successful or will make mincemeat of me. I might not live through this or I could live my life with a body all chewed to hell. Naturally, this terrifies the living piss out of me.

At this point in the game, I need to start throwing all that fear shit out the window and start trusting in God. Better said than done folks. Job said it best that we accept good stuff from God so much better than we accept the not-so-good stuff. Time to start flexing those faith muscles.

Meanwhile, we're in a holding pattern. Apparently, in its infinite bureaucratic wisdom, my insurance company decided not to cover the cost of unrelated donor searches. Peachy. The search for a donor match is on hold while some financial rigmarole gets sorted out (And it will. Don't y'all be fretting about that.).

Until then, I've got nothing but time to stew in my own juices about all this. Not good for a naturally brooding girlie like myself.

But I'm gonna get there. I'm heading for the morning sun.

Snapshots from the Sixth Floor

2008-07-11T23:00:00.007-04:00

So I have this one neighbor here, a Slavic gentleman, who is quite loud. His voice carries pretty well; he booms pretty well. I'm not sure why he's here, but he's convinced he shouldn't be. I hear him several times a day, telling nearly every nurse he comes across, that "I'm feeling much better today. I think I go home soon." The nurses are very patient with him. But he's still here.

Right up the hall is a dude who likes to sing. Or yodel. Or perhaps just moan.

Today I looked out of my window onto the sidewalk below and saw a woman dressed in a hospital gown, visible IV port on her hand. She was lighting up a cigarette. Now, I don't have any clue why she's here, but I can guarantee smoking isn't going to help. I really wanted to jack open my window and yell down at her, "Hey COW! Put that ciggy out or I'll vomit my leukemia all over your bleachy-blonde, white trash head!" Because she seemed like exactly the kind of moron who thinks cancer is contagious.

Oh and I got word from the bone marrow transplant that they've found eight potential matches for me. Hey ho. Now, we wait while these kind folks are tracked down for more testing and, hopefully one (or more) will be the right one for this girlie.

Finally, as we head into the weekend, more playing with mommy's webcam.

Little A and Mommy

Family Portrait

Yeah, it's our "Oh" faces.

And our monster faces.

Mommy wins this one. I look like freakin' thing that jumped out of John Hurt's chest. Sharbity shar, folks.

A Room With A View

2008-07-09T19:20:00.002-04:00

Since I have this fabulous new pink toy, I thought I try my hand at capturing what I am currently seeing out my front window with the webcam. Here's the first shot:

Admittedly, it's not my best work. But I quickly discovered that it's a tricky prospect to take decent photos with a laptop. On top of that, the RVA sky is a smidge overcast. The big building in the foreground is part of the Massey Cancer Center, specifically their research facilities. Good place doing good work. The area in the background is a part of Richmond known as Church Hill. It's what people refer to as an "up-and-coming" neighborhood, meaning there are two or three restored townhomes right next door to two or three crackhouses. But it's a lovely neighborhood, at least from a distance, and at night all the lights twinkle beautifully on the hill. Right at the bottom of the hill are two elevated train tracks. The sight of a freight train lumbering by is nothing short of exciting for Little A. He's sit up in my window for his entire visit if we'd let him, just for the prospect of seeing a train.

The second shot:

This one didn't take as well as I'd hoped because you can't quite make out the rather large air horn thingy on top of the Massey Cancer Center. Because the hospital is affiliated with a college, they've had to conform to the new alert system installed post-Virginia Tech Wacko Shooter incident. What this means for me is that if some wingnut decides to go all banana bread and shoot up his chemistry lab, then I'll be front and center for the sounding of the siren. Great.

And finally, what you've all been waiting for... But I must *WARN* you, I really am in no shape to be photographed, especially with my sans cosmetic hospital face. Plus, I am attempting a smile. Bad move because whenever I open my mouth in photographs I look surprisingly like Francis the Talking Mule. But anyway, here goes-The Bald Picture!

I'm bringing the hotness, ya'll. The bald hotness. Maybe in the next picture, I'll flash my Hickman line to complete the scary sci-fi look.

Miss Pink, if you're nasty

2008-07-08T23:40:00.003-04:00

Coming to you live from my brand-spanking new pinkity, pink Sony VAIO from my home away from home, North Hospital Sixth Floor. I love having all my gadgets (phone, nanoPod, now laptop) in the same color family. Plus, being AlabamaPink, I must live up to the monniker, especially in matters of personal style.

Overall I am enjoying my new tech toy. It's taking me a little bit to get used to the setup, especially what seems to be a highly sensitive mouse pad/clicker, even after some adjustments.

Nothing much to report. I have a lovely view out of my window of the city. Now that I am outfitted with a webcam, I'll have to try my hand at getting some shots of the lovely River City from my room.

The drills pretty low-key this time around. I don't spend the entire day hooked up to Cletus. My chemo comes with lower frequency. My challenge is to hang out, try to take as many walks about the hall as possible, keep from getting crazy constipated, and wait for the inevitable rashes and blood count crashes. I am also making a concerted effort to bang out at least 5-10 thank you notes a day while I am here. My lack of gratitude has been weighing over my head like a Winnie the Pooh Little Black Raincloud. You guys have been so incredibly generous with your friendship and prayers and fun gifts over the months. I would be remiss to not show my thanks in a more tangible way. Maybe I'll catch up on a few e-mails that have been lingering in the inbox for far too long.

Ah such high hopes. Instead, I'll get sucked into Law and Order and The First 48 Hours marathons, getting nothing accomplished but a slow widening of my ass.

And Prisco, I am now highly intrigued by this Hackman-Caine theory. Do tell.

Tossed in the Clink Yet Again

2008-07-07T23:44:00.003-04:00

I love the way Cancerville Clinic works. Today, I show up for a scheduled appointment with my doc only to find out that the White Coat Folks are gearing up to admit me for my first round of consolidated treatments. Did I know about this? Hells to the N-O. Fortunately, I was able to negotiate the terms of my re-incarceration into the Big House by a day.

Tomorrow, I'll be back in for a five day stretch. I'll be getting cytarabine every other day, at twelve hour intervals. Then I'll be booted out to wait as my now normal-ish blood counts get slaughtered to neutropenic levels, and I get to start from square one with recovery. The point of these consolidated treatments is keeping my Insane Stupid Zombie Leukemia Cells at bay until we can move forward with the bone marrow transplant. Last Thursday, I met with the bone marrow transplant docs. I've been gathering my thoughts regarding the information presented to me, so I've not posted on what I learned but plan to. The Mister has, and if you want to read his very thorough and informational post, hop on over to his blog.

While I am in doing my time, I may be without internet for a few days. Gasp! The horror! We finally got around to picking out my very own laptop today so as to no longer bogart my mother-in-law's. However, the new laptop won't be here for a few days. So the house will be dark for a few days as I try and entertain myself the old fashioned way-with lots of bad cable TV. Ha-cha-cha!

What a Difference a Year Makes: Independance Day Edition

2008-07-06T21:08:00.008-04:00

Irvington Fourth of July Parade-2006

Irvington Fourth of July Parade-2007

Irvington Fourth of July Parade-2008

You want the base model or a fully loaded MurderTank?

2008-07-03T10:51:00.005-04:00

This one's for my pals over at Pajiba. Frequently in the comment threads, there is mention of a mythical MurderTank that serves as the method by which the Pajibites will wipe out the fetid, poo smear that is Hollywood. Don't ask me from whence the MurderTank originated because, like many terms (Whiskeybabyninjastar and Godtopus) that sprang forth in full armor from the minds of Pajiba, the first mention of it is buried deep within the confines of some long forgotten thread and has now become the stuff of legend.

Anyway, because he is a fellow zombie warrior my uncle sent me a link to a pretty funny Wired article about the best post-apocalyptic vehicles. Two of the vehicles profiled provided me with pretty decent visuals of what the MurderTank looks like, which up until this point in my mind looked like Land of the Dead's crazy dreadnought RV/tank.

For your consideration:

The Dingo pictured here looks pretty basic but it does boast a heavily armored exterior, 7.62 mm machine gun, 40 mm grenade launcher, and for an added plus, it's air conditioned!

But then there's the Stryker.

Um yeah.

When you absolutely, positively got to kill every motherf***ing zombie in a five mile radius, accept no substitutes.

Do you think Henrico County will have a problem when I start parking one of these in front of the house?

Have a great Independence Day everyone!

Am I remiss?

2008-06-28T20:40:00.003-04:00

The Mister claims I am holding back good news from everyone. Well, here you are:

Yesterday afternoon, my doc called to confirm what The Mister had already predicted: According to the biopsy from Tuesday, I am in remission. My blood work also said as much; my counts have been climbing pretty rapidly. From Tuesday to Friday my hemoglobin went from 8.2 to 9.1 and my white counts went from 2-something to 3.2. The doc said he even double-checked the dates because he couldn't believe everything had come up so fast.

So yeah! Do a happy dance! Zombie Warrior's flamethrower action seemed to do the trick. Whoosh!

But don't break out the Bollinger just yet. I ain't cured. The leukemia's just been driven into hiding for a while. There's still more chemo for me on the horizon, standard treatment for any flavor of leukemia. Plus, let's not forget I have the rabid, fast-moving Danny Boyle-esque zombie leukemia cells. Odds are that there's a Typhoid Mary lurking about to kick start a disappointing, sloppy sequel. Bone marrow transplantation is still very much on the table.

Speaking of which, I was supposed to have a big meeting Thursday with the BMT team until the scheduling nurse screwed the pooch and neglected to actually put me on the calendar. She called Wednesday night to let me know this, and now I have to reschedule, hopefully sometime soon. Thppt.

For now, I am enjoying the fact that I feel better than I have in a quite a while and no longer need to be hyper-vigilant about germs. Plus, no more clinic visit until July 7th! A whole week off from Cancerville! Yeah! I'm not going to know what to do with all this time on my hands.

Maybe spend some quality time romping with my boy? Yeah, that sounds awesome.

And one more thing, a big fuzzy thanks to everyone who keeps sending me care packages and goodies and positive e-mails. I swear one of these days thosee e-mails will get answered and thank you cards sent out. Until then, please know that you guys are all awesome and I love you big honey bunches of oats.

The Making of a Movie Buff

2008-06-23T17:43:00.007-04:00

Today, we took Little A to see Kung Fu Panda, his first movie in a movie theater. This kid comes from a long line of movie lovers, so naturally he enjoys a good flick. He's already a big fan of Cars and The Incredibles, and even at his tender age will sit mesmerized through these rather long movies. But he's not yet had the complete movie theater experience, and this year we decided he would be old enough to have the patience for a full-length picture, to appreciate the big screen, and to not get freaked out at the dark or the volume.

By the way, how much does it bug me when parents bring age-inappropriate children to movies? Like an infant who invariably starts screaming or babbling in the middle of the film and whose parents seem to think the best approach is to try and calm the baby there rather than GET UP AND WALK OUT OF THE THEATER WITH YOUR SCREAMING CHILD. Or like the mother I saw with her two elementary-school-age sons at a showing of Jackie Brown because that's teaching them fabulous things about guns, sex, and profane language. Or like the mother we saw in line to buy tickets with her three-year-old daughter as we were leaving Iron Man at some time past 10 o'clock because that's an awesome time to see a movie with your toddler. Okay, sure I understand maybe not having the dough for a babysitter or maybe having a hard time finding a dependable one. But for crying out loud people, just suck it up and wait for it to come out on DVD.

Anyway, I digress.

We've been hyping this movie experience and Kung Fu Panda since I got out of the hospital after my first round of chemo. We've been watching the online trailers, reading the book, and we even got some Happy Meal toys. I've been pretty jazzed about this, my son's first movie-going experience. Once the doctors declared me no longer neutropenic, we got busy picking out a day and a showing. We packed snacks, put on a snazzy polo shirt with pandas embroidered in the corner, and set off to meet my mom at the theater.

Then due to a mix-up with the times, we ended up there an hour early. Snort. But it was good opportunity to grab a quick lunch.

Occasionally, there are moments when Little A does something that makes me wonder if he truly is the fruit of my loins. Today, for instance, he summarily rejected popcorn. My mom talked him into trying a piece which he promptly ejected from his mouth. Doesn't like popcorn. Huh.

We settled into our seats. Immediately, Little A seemed puzzled as to why we were being forced to watch commercials. I told him I wonder the same thing too some times. Once the movie started, Little A was mesmerized. The only time he talked out loud was to inquire about the usher who came into the theater to make his rounds ("What's that man doing?"). I loved seeing his big grin whenever he recognized a favorite line or scene from one of the trailers we watch.

But I think the whole event, coupled with the darkness and the fact that the sound was a little low, wore him down. By the last ten or fifteen minutes of the movie, he was starting to look drowsy, but I think the final battle scene roused him out of his stupor. All in all, he seemed to enjoy the experience. The scenes with the younger Tai Lung and Master Tigress being the most memorable so far.

Later, when talking about his experiences, Little A made sure to mention the "holes in the seats to put our drinks in." My kid remember the cupholders. Awesome.

The day's events have pretty well baked his noodle because it's taken me a good while to try and spin him down for sleepytime. Whew. I guess our big screen adventures will be few and far between, at least for now.

On one last note, I've got a bone marrow biopsy tomorrow. Just a reminder of my friends, the zombie leukemia cells. Let's hope and pray that the last scorched earth approach has kept them somewhat at bay. Otherwise, the Zombie Warrior's going to start investing in some nuclear goodies for her arsenal.

My Poor Butt

2008-06-19T20:37:00.005-04:00

*Quick note before I start this post: I am home. I was discharged this evening. Fever came and went and I am infection free. Good news is also that my neutrophils are high enough to render me no longer neutropenic which means I don't have to don my sexy mask whenever I go out in public. But I am still suffering from rashy, flaky skin and a charming flushed face, all thanks to the antibiotics. Antibiotics are my catch-22; I need the little buggers to keep me healthy, but then again they like to wreak havok on my skin and my intestines, leading me to the subject of this post...*

Let me warn you all, dear readers, this post falls under the LeukemiaTown:TMI sub-header. You are duly forewarned.

My bowel issue I originally wrote about was this bizarre bout of constipation that started around Tuesday evening. I would describe it thusly: The train was in the station, the station wanted the train to leave, but the train simply would not depart. And no amount of shoving from my steam engine, could push the train out. The pushing was actually causing me a measure of pain and discomfort, a measure that steadily increased with time. My body wanted me to go and kept sending me signals to go, but still, despite my efforts, no deal.

The nurse gave me a stool softener. This seemed to have no effect, so I got a second pill. On Wednesday morning, after still no results from the stool softeners, I was given the most bizarre laxative. It was in the form of a little bottle of lemon-lime club soda. The lemon-lime flavor was present, except there this bizarre, thick plastic under taste. It was like drinking a Barbie Soda. I drank the whole bottle, waited about four hours, and then, after still no results, I got panicky.

See, I am not generally a weeper, but I guess when it comes to my precious bowels, I am a little sensitive. My frustrations and terrors and pain all came to a head, and I cried a bit in front of the nurse. What a wuss I am when I can't take a proper crap.

Docs sent me for an x-ray to rule out an obstructed bowel. While awaiting results, around three o'clock, a curious thing happened. There was movement. Yeah! Results! No enema!

Then all hell broke loose, and I got raging, crampy, butt-punishing diarrhea. Barbie Soda was a little bit too effective. For the next few hours, I got well acquainted with my bathroom. You know, I don't think I've ever had anything like this. There were these stunning cramps that ran all the way down my abdomen, cramps so strong my ab muscles are sore today. This cramping would cause me to bug my eyes out, kick the wall, and exclaim some nonsensical gibberish because frankly I was too busy being horrified of my own intestines to talk straight.

All I know is thank goodness there was one of those handicapped railings right beside me so that every time a good wave of cramping set in I could grab onto it like I was riding the Wild Diarrhea Coaster.

It was some intense bunch of stuff.

There'd even be instances where I get that feeling, make a dash for the bathroom (as much as one can when one is hooked up to an IV), only to get to the toilet and have to wait five minutes before the show started. Daggit.

Needless to say: My poor butt.

Now that I'm home, seems like the excitement is slowly dying down. My rides on the Wild Diarrhea Coaster are becoming fewer and far between, and turning more into rides on the Gentle Diarrhea Skyrail.

But I have made a few discoveries during this fun period of intestinal excitement. One: Those wet toilet paper wipes my grandmother, who swore by them, gave me a few years back actually come in handy in these types of circumstances.

Two: Boudreaux's Butt Paste works fabulously to soothe big people butts as well.

Back in the clink

2008-06-18T10:18:00.003-04:00

Well, I broke the terms of my parole and ran a fever (103.6 to be exact). So they threw me in the Big House again. I've been here since Monday night getting antibiotics and trying to keep my temp down.

There's no indication of when I'll be going home. I've developed a fun new rash in response to one of the antibiotics.

Also, I'm having some scary trouble with my bowels that isn't responding to the usual treatments. I'll spare you the gory details, but I'm concerned that there's something seriously wrong. The doctor told me to wait until around 11 this morning to see if the latest medicine they gave me worked. It hasn't and in about a half an hour, I'm going to start beating my drum to see a gastroenterologist or somebody who might be able to figure out what the problem is.

I don't want to be here for a long stay, but I also don't want to leave until my bowel situation is cleared up.

So, I am not in a good place right now.

Liquid Gold

2008-06-12T22:25:00.005-04:00

It's expensive to get sick. This is not startling news. Many of us have felt the burn paying out-of-pocket for doctor visits or God forbid, an emergency room experience. Yikes.

Try getting really sick. Like With The Cancer sick.

Holy Moley.

A couple of weeks ago, I received an itemized bill for my first stretch in the Big House (for which we, so far, don't owe a penny, thank The Maker).

Yeah. Um. Wow. Add Your Favorite Potent Expletive Here.

The total bill was nearly as much as the asking price for our house when we bought it. Almost half that amount was represented by the line item "Pharmacy". Chemo is some seriously expensive poison, not to mention the litany of antibiotics, pre-chemo drugs, and various other pills and such I received as part of my treatment. Apparently, had I been given the choice, I could have either gotten the medicine or for the same amount of money bought a fairly well appointed luxury vehicle.

Obviously, if you want to strike it rich, get into manufacturing chemotherapy drugs. Black gold, Texas tea. Pshaw. More like idarubicin and fludarabine and cytarabine.

Now that I am home, my doc's got me on a one-two combo of highly potent antibiotics to prevent possible infections. One of these medications couldn't be filled by my usual Target pharmacy nor did the hospital pharmacy have it. Our local uber-pharmacy, Westbury, came to rescue. When I went to pick it up, the pharmacist, a charming older man, leaned over the counter and said with a twinkle in his eye, "Honey, you've got insurance, right?" I whipped out that card like I was showing my papers at a dicey border crossing. The going price for 105 mL bottle of this antibiotic (made specifically to combat fungal infections in people with compromised immune systems) is... are you ready for this...

$800

Sweet baby Moses; that's almost a mortgage payment.

Fortunately, we only (and I am using "only" very loosely here people) had to pony up $108 for my eensy bottle. 105 ml ain't a whole lot. Here's the rub: I gotta take a spoonful of this stuff three times a day. I've been taking it for less than a week, and the the bottles just about half empty. I know my doc's going to want me to continue taking my antibiotics at least as long as I am neutropenic. First time through chemo, it took me weeks to get my shitty white cells to eek across that border. So this might mean refill.

Laws.

All I know is that if I as much as get a freaking yeast infection while I am taking Liquid Gold the manufacturer is going to be getting at least a nasty phone call from me. Maybe I'll sick Zombie Warrior on their butts, screaming for my $108 back.

When I was examining the box the other day to see who makes this caviar of anti-fungals, I came across an interesting fact; it's made in Ireland. That explains it.

Leprechauns.

Summer's Here

2008-06-10T22:47:00.005-04:00

Here's your much needed break from Amanda's Health Woes with some unrepentant toddler cuteness.

I present to you, Little A on his playground:

And yes, that is the face he makes when you ask him to smile. Killer, I know.

This is his "serious driver" look. I believe at the time he told me he was driving Grave Digger.

This is Little A's dismount pose from the slide where he is "waving to his fans". I couldn't make this up if I tried.

The last few days here in RVA have been blazin'. Our recent nightly ritual has been kicking back with some hot sprinkler action.

I tried to get some action shots of Little A running around the sprinkler, but every time I raised my camera, he wanted to pose.

"I'm all soaking wet!"

A Glass Hammer and a Bag of Nothing

2008-06-08T21:30:00.004-04:00

That's me. Useless. Bad blogger. No doughnut.

Round two of chemo went by with little event or trauma. Five days of hanging out in the hospital, getting my poison, discovering an addiction to crossword puzzles, and watching cable tv. My biggest issue was a narsty case of indigestion I developed in The Big House that has followed me home like a gassy little puppy. So if I were to be classified as a celestial body, I'd be a Gas Giant. Me and Jupiter.

This recovery process has been weird. I'm not in the hospital where I lie about all day getting tending to and poked by medical professionals. I'm enjoying the comforts of home, but also being home, I have a hard time just being a slug and letting my body get better. I want to do stuff. Plus, try explaining "recovery process" to a toddler. The first two days I was home, I was pretty much a zombie. I had Adrian stay home with me on Thursday so I could sleep all day.

One of the side effects of my treatment is Nasty Mouth. The pervasive taste in my mouth has been that of sucking on ball bearings. This charming metallic taste worsens when I eat or drink anything. Drinking plain water is the worst; it's like I've licked the inside of a faucet. Get the picture? Coupled with my raging indigestion, eating and drinking hasn't been a pleasurable experience as of late. (But for some strange reason, Taco Bell bean and cheese burritos are the only food product I crave constantly that don't exacerbate either my Nasty Mouth or my Crazy Intestines.)

This is how I came to be severely dehydrated on Friday.

I woke up, ready to be off for a long day at the Dalton Clinic, or as I like to call it, Cancerville. I knew I was prepping for a blood transfusion (PLEASE GIVE BLOOD!) Friday; my doc assumed that my hemoglobin would probably be low. Every unit of blood I receive takes at least two hours to complete. This timeframe however does not include all the hospital rigamorole I have to go through before the transfusion even begins.

Back to Friday morning. After waking, I soon discovered that I couldn't walk across the room without nearly fainting. I could barely stand without swooning. Good times. My mother-in-law arrived to look after Little A for the morning, saw I was in this state, and called my doctor. They of course wanted me down at the Clinic ASAP and suggested an ambulance. My response: Um. No. My dad showed up to ferret me down to Cancerville, I sucked up, drank some water, felt moderately better, dressed, and got to Cancerville without the charming services of Lakeside Volunteer Rescue.

After what seemed like an enormous wait once my blood was drawn, the White Coat Folks decide to give me some fluids which perked me right up like the Water of Lourdes. They also decided to pump me full of two units of platelets and two units of blood (Don't forget to GIVE BLOOD!). Platelets take about a half an hour a unit to completely transfuse. Remember what I said about the time involved with a blood transfusion? It was going to take so stinking long to finish my treatment that I ended up being transferred to an entirely different part of the hospital to get my two units of blood. (Which really was fine because when I was in Cancerville getting my platelets, there was a woman in the room next to me retching her guts out loudly. The whole time. Guh. Plus this other unit had television in the rooms.)

On Friday, I got to Cancerville at about 10 a.m. My dad got me home at about 9:30 p.m. that night. God bless my saint of a mother-in-law who stayed nearly the whole time.

Needless to say, I've stocked up on a variety of beverages to help hydrate my Big Stupid Butt, including a return to a long lost favorite, Blue PowerAde, and yummy fruit nectars.

Oh and what was the first piece of mail to greet me upon returning home Friday? A freaking summons for jury duty. Federal court, too. I've been thinking about writing "Leukemia, bitches" on the back when I send it in to be excused.

A Pleasant Fiction

2008-05-29T22:23:00.011-04:00

Last night, the Mister and I had our second movie date night of my furlough. We went to see the new Indy movie (which was fairly entertaining but lacking the sparkle of its predecessors, especially Raiders.). Life has really been falling back into this semi-normalcy, despite Momma A's bald head and tubies and clinic visits. We were eating family meals, going on errands, and having a great time playing with Little A. But it was a pretend normalcy

Because now I'm back in the Big House, getting chemo Round 2. I'm back in the land of Cletus the IV, cavalcade of medicine, late night nurse visits, poking and prodding, and napalm mouthwash. Good times peeps. And of course, a bone marrow transplant is in my near future. Whoop, whoop!

Last week my bone marrow biopsy revealed refractory leukemia cells. Some of these stupid cells dared show their faces after the Zombie Warrior and her chemo arsenal steamrolled through the halls of my bone marrow. This news wasn't a huge surprise to me considering I'd already been informed that my flavor of AML is particularly aggressive and a narsty bugger at that. So instead of those slobbering, shambling Romero-esque ghouls, the Stupid Leukemia Zombie Cells inhabiting my marrow are more like the psychotic infected from 28 Days Later or Zack Snyder's swiftly moving undead. These are tough buggers, and Zombie Warrior's going to need a more powerful set of weapons, and that's why I am here. Of course, arming her to the teeth may cause some further collateral damage to my body; give a gal a flame thrower, and she's bound to scorch the walls something fierce.

Keep me in your prayers as I take on this new, more intense round of chemo. The poisons are being pumped in for five days. If I don't react poorly (meaning no fevers or insane side effects) to the chemo, I might be released on parole after the chemo treatments ends. That's our prayer goal now: That Zombie Warrior cleans up these vicious leukemia ghouls and that she doesn't completely trash my body in the process.

Yeah and my new attending doctor is a jackass. An old fart doctor who cracked a joked about how I "looked good now but just wait until after they'd finished with me." Yeah, who's been complaining about Dr. CrotchedyPants?

Did anyone else notice Aaron had a White Rabbit poster on his bedroom door on tonight's Lost season finale?

Spam sales are up 7%.

Finally, according to the US Postal Service, come December, I no longer live in Richmond, but Henrico. Curiouser.

Off to catch my fleeting Big House zzzzzzz's.

Holiday. Celebration. Come together in every nation.

2008-05-27T21:34:00.007-04:00

(No medical updates today, peeps. I had a great holiday weekend with the fam and want to focus on that. The news from Friday wasn't devastating, nor was it ohmygoshyouaremiraculouslycured. More details tomorrow.)

My holiday weekend started on Thursday. The Mister and I threw caution (and my neutropenic state) to the wind and took in a flick. The flick. Iron Man, baby. In honor of my fabulously supportive 'jibans, I donned my "Pajiba Bus(ted) Tour 2008" t-shirt, as well as my Jolly Roger do-rag over my bald head especially for the big event: The first real movie post Big House. It was as if the whole Pajiba crew was there to cheer and celebrate as I crammed my mouth full of movie popcorn and dark chocolate Raisinets.

Man, that movie was something else. It was in many ways the perfect comic book movie. Just enough back story and character development to make Tony Stark believable, but not waste vital screen time. Action sequences were kickin' but not overly long. Actors put in smooth, professional performances. And I laughed out loud more than a few times. I'm just delighted to have been able to see it on the big screen.

Plus, the trailer for The Incredible Hulk was intriguing. I think I might want to see this one. Who can pass up Ed Norton AND Tim Roth?

Saturday, Clan Amos headed over to the king of bog box toy stores, Toys-R-Us, on a mission to acquire some outdoor play equipment for Little A. The set we ended up with is perfect for our crazy toddler man. It's got a ladder, a slide, two walls with climbing hand holds, a cave, and... a steering wheel, the feature that ultimately sold us on this particular model. My little racer does love to drive. After his first few minutes on his new playground, Alastair announced, "This playground is neat."

During the time I was in The Big House, Alastair has totally moved out of babydom into little boyhood. Watching him play and listening to the things that come out of his mouth, I've realized how much he's grown in such a short time.

Adrian has taught him to exclaim, "Punk rock!" (which he sometimes gets mixed up and calls out "Punk up!" instead.), as well as to command someone to "Throw the goat!"

Tonight at dinner Adrian asked him where the million dollars was, and he replied, "Upstairs in bed sleeping." I explain that probably wasn't a wise investment of funds.

We have also established that "narcolepsy" is a magic word that sends Daddy to the ground with some voracious fake snoring.

Sunday, I enjoyed my favorite mom-shared pastime, shopping and spent most of the time digging through the Anthropologie clearance room. Hey, were I independently wealthly, I would be outfitted exclusively in their high-priced quirk.

Yesterday was full of outside playtime (resulting in some butt whooping allergy symptoms today), Indy car racing, and ice cream. I actually watched the entire race with The Mister, particularly enjoying Danica Patrick's minor hissy fit when a fender bender in the pits pulled her prematurely out of the race.

Listen to me. I sound like a freakin' race fan. Shivers.

Finally, I cannot express how excited I am to have So You Think You Can Dance back on television.

Mixed Nuts With a Seasoning of Marrow

2008-05-21T20:49:00.006-04:00

Tonight I've been gimping about my house like a geriatric hip replacement patient. Now I can fully appreciate having gone through my four previous bone marrow biopsies in The Big House where I could laze about in bed and oxycodone was on tap. The biopsy went well; the doc performing it was actually a hemo-oncologist fellow and the pathologist observed and assisted. That's the double edged sword of being treated at a teaching hospital; there are lots of fresh minds on your case, but you are also something of a guinea pig. The fellow performed the biopsy fine, yet I couldn't shake the feeling that he was seriously digging for treasure in my pelvic bone. Plus he reiterated the findings of the two previous pathologists who did my other biopsies: I have bones of stone.

The biopsy results will be ready for my appointment on Friday. Here's hoping for good news.

Speaking of good news, my white counts are up. Other counts are holding firm. Of course, I forgot to ask whether or not this takes me out of neutropenic precautionary zone. A viewing of Iron Man is still in my near future, even if I have to wear my sexy mask and cover the seat in a surgical drape.

Other random news from down Amos Way:

My relationship with Little A has been firmly (and perhaps even stronger than before) reestablished. Yesterday, for the first time since my being home, he called specifically for "Mommy" after his nap. We spend lots of time snuggling and hugging and wrestling, and actually, he's gotten pretty lovey and cuddly lately. It's awesome.

He has also become obsessed with watching the online trailers for both Kung Fu Panda and Wall*E. Based on release dates, it looks like Clan Amos will have to betray their fierce Pixar loyalties and introduce Little A to the movie theater experience with a Dreamworks flick. Oh well. He'll love them both, of that I am certain. He can already sing the first few bars of "Kung Fu Fighting" complete with the "da da da da duh duh duh" part and can identify both Wall*E and his robotic girlfriend Eve.

I can't believe I've not posted this sooner, but my West Coast blogger buddy Girl With the Curious Hair is working with Team in Training, raising funds and preparing to run a half marathon in my honor this October. Mosey on over to her fundraising page and toss her some coin. The Leukemia and Lymphoma Society does some awesome work for folks like me and their families, acting as a support system and an advocate for people who are battling blood cancers. Hopefully, this time next year I will have successfully kicked leukemia's butt and will be training for my own race.

Speaking of events in my honor, the blood drive was apparently a success. Forty-four people showed up to donate, and thirty-eight were able. I only wish I could have been there to personally thank every single donor or potential donor. That's thirty-eight lives saved. Kick Ass.

It appears that the esteemed Senator Teddy Kennedy and I are rowing in the same boat. I'd love to send him a card saying welcome to The Cancer and just suck it up because you've had a long life, outliving your more esteemed brothers, and even managing to dodge that whole Chappaquiddick business.

What the hell was up with the House season finale? Could it be any more Debbie Downer? And why did it have to air on the same day I get a rotten prognosis concerning my particularly nasty brand of Stupid Zombie Leukemia? And my anniversary? Jeezie-peezie people. Way to stick it in and break it off.

I really need to post a baldness picture soon because I am very proud of my naked skull. It's quite lovely.

A New Normal

2008-05-19T14:33:00.003-04:00

A few weeks ago whilst visiting, my uncle used the term "a new normal" to describe life when you have a serious disease. Life changes drastically, almost overnight, but then that change becomes the routine of your existence. You have to adjust, sometimes continuously, as this new normal takes over the day-to-day. So not only am I having to relearn parts of my old routine here at home with Little A, but also integrate my new practices like daily saline flushes of my Hickman line and psychotic hand washing . I'm also learning to become more flexible with my schedule and my notions about my own health.

Since being home, I've felt pretty good. I tire a lot quicker, and my allergies went into hyper-drive for a few days, but other than that I've been feeling moderately healthy. My blood work, on the other hand, tells a different story. I had a blood draw today, and my white counts have stayed the same since last week, hemoglobin is down a little, and platelets are down. The doc (known now as my Parole Officer) is concerned yet again at my slow rate of recovery. So he's moved up the bone marrow biopsy (Number five!) that was scheduled for Friday to Wednesday; the White Coat Folks need it to determine what the heck is going down in my marrow. Are the Oompa-Loompa's just on an extended smoke break and need to get back to work making my cells? Or have the Stupid Zombie Leukemia Cells reinfested? Only the biopsy will tell.

Either way, my furlough is going to be cut short for another stint in The Big House. I'll be getting more chemo, but what kind depends on the results of the biopsy. So I'm looking at another couple of weeks behind bars. And sooner than I anticipated. Apparently I misheard my doctor and thought his "three weeks" meant three weeks from this week. Nope. He meant three weeks from my initial release from the hospital. Dammit.

All this schedule shifting means child care plans have all been thrown higgedly-piggedly. I now have to find someone to watch Little A and someone to give me a ride to and from the hospital (Since they give me the goofy juice for a biopsy, driving is not recommended.). Plus, someone needs to watch Little A while I make my triumphant return to Dancing With Chemo as my mother has to finish out the school year.

Watch as Manda beats her head against the wall.

On top of all this schedule shifting nonsense, I get the additional word that my genetics don't look promising. Apparently on one of my cell lines, I am missing a chromosome at chromosome 7. From what my Parole Officer tells me, this indicates a fairly aggressive form of leukemia (Sweet! Awesome!) which is generally treated with a bone marrow transplant (Rad!). And at that point, all I've got going for me is my youth and the grace of God to get me through to the other side.

Looks like when I wandered off the highway and my RV broke down in LeukemiaTown, I ended up in the slums with a pissed off Denis Leary hunting me down. I ain't got no map, and it's a long way to the border. And Cuba Gooding Jr.'s having a hysterionic fit.

Oh and today is my anniversary. Here's to eight great years! Best husband ever!

Where the Deer and the Antelope Play

2008-05-13T20:25:00.005-04:00

Yes, indeed, I am home.

And home has worn me out. My house feels a little like a foreign land. The formerly natural daily routine has become awkward, like I've been thrust into a square dancing competition. My legs are sore from, I kid you not, walking up the stairs in my house. It's the most walking I've done in weeks. But I can tell you that it's a whole heck of a lot better than the heart palpitations that plagued me months ago whenever I went up the stairs.

Last night, I found it difficult to sleep in my own bed. I struggled for ages to get settled in what used to be a comfortable bed. I spend a month sleeping on a plastic encased mattress and pillows, with bed rails on either side, and no matter how much I lowered the dang thing, always on a slight incline. I was woke several times during the night by nurses to poke and prod me. Finally, I get home to my own quiet, darkened, comfy bedroom, and I turn into a freakin' insomniac. Then I woke at 4:30 this morning and couldn't get back to sleep. Awesome.

So, this whole transition to life on furlough is going to take some time. Reestablishing my relationship with Little A seems to be turning into a process as well. There was a bit of a meltdown at breakfast this morning that depressed me, but by the end of the day we were frolicking in an empty box and imitating Dancing With the Stars. But I have to admit that it's mighty depressing when your toddler with whom you spent most waking hours is suddenly intrepid around you.

I go for my follow-up visit tomorrow morning. Before I left yesterday, the lab results were still inconclusive on my final neutrophil count. As a result, I am still on neutropenic precautions: no fresh fruits, flowers, plants, or veggies; strict hand washing; avoid public places where exposure to germs could be high. This is mildly frustrating since returning home and seeing all the blooming life in my yard and subsequently dying to get my hands in the earth and do some gardening. Plus, there's this little movie called Iron Man I'd like to catch. Here's to hoping that tomorrow's blood draw reveals a decent count that would allow me to get back more of my normal life and allow me to eat a freakin' apple.

Geez people. Give a girl a break.

In my last few days of incarceration, I added yet another book to my list, the hardcover Marvel Zombies, bringing my total tomes consumed to 15. Need some recommended summer reading?
For the next few days I'll be trying to ease back into my old routine and life around the house, unpacking my stuff (I swear it's like moving home from your college dorm room. I've practically got a whole new library which only contributes to my existing, ahem, problem with books.), and getting a small posse of sellables together for my church's yard sale Saturday. All this while I'm still trying to heal and my marrow attempts to get with the program of making my blood.

Overly ambitious? Or just me?

Glad to be back, folks. Stick with me; I guarantee this won't be my last medical adventure.

Happy Mother's Day

2008-05-11T22:16:00.004-04:00

Good news for Mother's Day. They are finally booting my butt out of The Big House. As long as my neutrophil count climbs up past 5oo (It was 400 this morning.) and no fevers, I'll be going home.

So, dear readers, the next post I write will hopefully be from the comfort of my own PC.

This is crazy good news, but it really hasn't sunk in yet. Maybe it's the hospital "fake twenty" phenomenon that has desensitized me. Maybe it's the slight fear I have of leaving the safety of the hospital where my blood's checked daily and a team of doctors review my health and well-being. With this sneaky old leukemia possibly lurking about, I feel more protected cocooned in my hospital room and surrounded by The White Coat Folks and the awesome nurses.

My home feels as far away as the moon. The concept of sleeping in my own bed, eating my own food, spending time with Little A and The Mister is beyond my imagination's reach right now.

But holy junk, I can't wait. Dorothy had it right; there's NO place like home.

All of my wonderful readers, friends, family, and fellow Pajibians have made my stay here in The Big House more than tolerable. You wonderful people lifted my spirits and reinforced my strength to help me get through the boring days as well as the rough days. My gratitude for the visits, cards, gifts, phone calls, e-mails, blog comments, prayers, and well wishes is immeasurable. Truly, my cup overflows.

Even though I'll be getting out of the hospital soon, please don't stop reading my blatherings. I have a feeling I'm not quite out of LeukemiaTown yet, so I'd love it if everyone stayed with me until I pass through the city limits and onto healthy horizons.

Well, the painkillers the nurse gave me to help combat my earache are starting to catch up with me (Typical, the day before I leave the hospital, I have sinus trouble resulting in narsty ear pain.), and I need to get my sleep before the big move out day.

Man, I'm going to miss cable television.

Quiet Days

2008-05-09T12:12:00.006-04:00

Now that I am off the antibiotics, I get less attention from the nursing staff here. But that's not to say that they don't like coming and hanging out with me. A large percentage of the nursing staff is close to my age or younger, and I guess that's why they like taking a little break from their daily patient workload to come chat and chill in the nutty bald gal's room.

Yesterday, my nurse told me I was the healthiest leukemia patient they had on the floor. If only my bone marrow would get that message and start doing it's dang job. Dang it.

My days have been pretty quiet as of late. This morning I organized my library of books, CDs, and DVDs. Because of the great generosity of friends and readers, I still have quite a stack of unread books. I thought I'd catalog the various titles I've read since my incarceration in the Big House. Here they are, in no particular order, what I've read in the past month (And don't be insulted if the book you gifted/lent me hasn't made the list. I go with what my mood and brain are itching to read at that moment, but trust me, every book will be consumed in good time.):

Hell House by Richard Matheson

20th Century Ghosts by Joe Hill

How Sassy Changed My Life by Kara Jesella and Marisa Meltzer

Suite Francaise by Irene Nemirovsky

A Cook's Tour by Anthony Bourdain

Fragile Things by Neil Gaiman

Blackgas by Warren Ellis (disturbed the bejeebers out of me)

Heroes, Vol. 1 graphic novel

Duma Key by Stephen King

Roald Dahl's Book of Ghost Stories

Soul Kitchen by Poppy Z. Brite

The Big Over Easy by Jasper Fforde

Twelve books. Considering I've been here a month, that works out to about three books a week. Not too shabby. This isn't counting the fact that I've read my body weight in magazines, nor the daily little nibbles I take from various devotional books. I'm in the process of reading More Jesus, Less Religion by Stephen Arterburn. And I've watched a fair share of movies and I'm almost through the first season of Arrested Development (then on to tackle season one of Veronica Mars).

My next book was sent to me from my great Yankee girlfriend, Maureen, who also sent me Bunny Suicides. I'll next be cracking open G. K. Chesterton's The Man Who Was Thursday. Whatever comes out of my stay here in the Big House, at least I can say I'm well-read.

What the heck was up with Lost last night? Could they cram more stuff into one episode? It was like one of those food brick burritos from Chipotle. The back story and plot twists were just oozing out all over the place like sour cream and guacamole.

And just in time for Mother's Day, there's this insanity. Holy junk, lady. Give your poor uterus a rest.

Finally, an experience that one would only have in the Big House: I woke this morning to find a blood-filled syringe lying next to my thigh. Not a cause for alarm but weird nonetheless. Man, I love it here.

Life in the Slow Lane

2008-05-08T09:05:00.003-04:00

The results from my biopsy came in, and there's no bad news. No signs of leukemia present in my marrow, thank God. However, there's really no good news, either. Apparently, there's not much else going on in my marrow, and it should be cranking out the white blood cells right now. The White Coat Folks are concerned as I am young and should be bouncing back at a more accelerated rate. Right now my recovery is taking a slower than average pace. My main attending doc said he's confident my white count will come up; it's just a matter of time.

My poor bone marrow has really taken a beating. First there's the invasion of the Stupid Leukemic Zombie Cells that crowded out and devoured all the normal healthy cells. Then we send in Zombie Warrior with her arsenal of chemo weaponry. She plowed through the halls of my marrow leaving a wake of gore and shell casings. The zombie cells were annihilated, but somewhat at the expense of my bullet hole-riddled marrow.

The latest and greatest news from The White Coat Folks is that they may take me off of the antibiotic I've been receiving every six hours through my IV, Cletus. Apparently, some medicines and antibiotics actually can suppress white count production. The docs are hoping that perhaps this is the answer to my pokey white blood cell production, and by pulling me off the antibiotic, we might be able to get this show on the road.

So there we are. More waiting. More frustration. Thank the Good Lord for all my readers and Pajibans who have been gifting me with books and entertainment. It chases away the boredom, fo' sho'.

Blood Drive in my honor to be held Thursday, May 15 from 3-7 pm!

For those of you in the RVA area, a blood drive is being held next Thursday at Dumbarton Elementary School, located at 9000 Hungary Spring Rd. in the West End (near Hermitage High School). The drive was organized by the staff at the school, which is also the school where my mother works. They are holding the drive in my honor because we all know what a freakin' vampire I've been since moving to LeukemiaTown, scarfing down blood transfusions.

If you are interested in participating in the drive, please let me know, so we can contact the school with a rough estimate of donors (It helps the Virginia Blood Service staff for the drive.). Please feel free to pass the word about the drive to anyone you think would be interested. If you've never given blood, I encourage you to consider it. Maybe the process is a little uncomfortable, but you just don't know how valuable these donations are to those of us who need them.

I leave you with a tip on Life in The Big House: Avoid cooking shows, like Top Chef. I was practically slobbering all over myself watching last night's episode. Even though in real life, I'd never have eaten beef brisket or Chilean sea bass.

A Bit of Parole and More Pelvic Drilling

2008-05-07T09:01:00.003-04:00

Yesterday was bone marrow biopsy number four. My docs are hoping this biopsy will give them a better picture as to why my white counts are on the slow boat to China, as well as check the status of my marrow in general. Worst case scenario: They find that the stupid leukemic cells are still hanging about, and I'd be up for chemo round two.

I won't know results until later today or tomorrow. This uncertainty has been weighing pretty heavily on my heart. I've prayed a lot about it over the past day, but I'm human and unfortunately worry seems to be part of my genetic code. Can't seem to shake the stink of doubt and pessimism off of me.

More than anything, the prayers and thoughts of others have buoyed me through some of the darker portions of the past month. So I am calling in my troops to do what you guys have been doing tremendously well for me and that is all sending up those prayers and healing, positive thoughts and vibes.

I've been working on my healing imagery, and y'all sent me some pretty good ideas. I decided to go with the Willy Wonka candy factory pumping out white blood cells on a conveyor belt that slide into a big copper funnel and into my blood stream. I liked the Krispy Kreme idea, but thinking too much about doughnuts only made me hungry for one. I'm trying to get better not get fat.

Also yesterday, my wardens let me take a stroll outside the building (with mask on, of course) with my parents and Little A. It was a perfect day to be outside: sunny, in the seventies, light breeze. We went to the nearby Healing Garden, a gorgeous explosion of flora and fountains and sculpture in a little walled garden overlooking the hum of I-95. Little A had a great time dashing about the plants, getting his hand wet in a fountain, and then getting his head stuck in the metal gate (quickly remedied but not without tears). For the first time in I don't know when, I got to carry him around. The feel of his little arm around my neck was pure heaven. We stood and looked out over the highway traffic and called out what kind of vehicles whizzed by. Little A was particularly excited about a caravan of school buses and a TANKER TRUCK (his emphasis). Hopefully this afternoon, Adrian and I will be able to take a trip to the Healing Garden for more fresh air and sunshine on my skin.

This is the roller coaster of LeukemiaTown. Sunshine and biopsies.

Now I sit and wait, as I have for at least a week now. Only this time I'm doing a bit of the hand-wringing in anticipation of the news to come. That dark, negative part of my gut instinct tells me that not only will I be stuck in the Big House for Mother's Day, but in all likelihood, my anniversary as well.

Nuts.

Oh and in other news, for those of you in the RVA area, there is a blood drive in my honor to be held at Dumbarton Elementary School on Thursday, May 15 from 3-7. More on that to come.

The Waiting Game

2008-05-04T21:11:00.004-04:00

Remember the scene in Beetlejuice in Juno's waiting room? Where the dead people wait for an eternity? Yeah, that's me. Instead of waiting to see a lady who exhales smoke through the slit in her throat, I am waiting for my white blood cells to increase. By all accounts, I feel fine; no fevers for several days, my cold and cough are almost gone, and my rash is all but cleared up. Unfortunately, my blood tells another story. While my platelets are up to a normal level and my hemoglobin is slowly increasing, my white blood count is bobbling. Last week, the white blood count shot up pretty quickly. Now, the counts have plateaued and even dipped a few tenths.

Bollocks.

However, the blast cells that had everybody all worked into a lather earlier, continue to decrease in number in my blood. So I guess that's good.

The docs are watching my numbers like hawks, trying to decide whether or not another biopsy is necessary. Personally, I think they are all sadists who just want to torture my poor pelvic bone.

So I need to motivate my pokey bone marrow to start cranking out the white blood cells, double-time. My dear readers came up with some great mental images to help me envision the chemo crushing the stupid leukemia cells. Now I need something to visualize so I can compel the creation of white blood cells. I've been wracking my brain to come up with something good but with no avail. Wonder why it's so easy to envision destruction but not creation? Any ideas out there?

Tomorrow, I'm shaving my head. My hair's thinned out pretty considerably. I'm borderline mangy. Plus, I'm just sick of seeing my hair everywhere: covering my pillow in the morning, inside my shirt, all over the floor. I can sympathize with my poor shedding kitty cats. Every time I touch or move my head, a sprinkling of hairs comes raining down. Ick. I am ready to be done with my hair. I just hope my bald head isn't too weird or lumpy.

Today, I discovered the turkey salad sandwich here isn't too bad, meaning I can eat it without making a face.

Fool Me Twice-With Tasty Update!

2008-05-01T18:50:00.006-04:00

More Big House fake twenty-dollar-bill tricks have been played on Manda today (And yes, Karen, I am totally referring to your husband.), except this time the fake bill snatched from my grasp was the possibility of going home.

Instead my Folger's Crystals has been replaced with a definite bone marrow biopsy tomorrow and the very strong possibility of a second round of chemo to follow, starting next week. Which in turn would mean another two or three weeks of solitary confinement in the Big House.

Junk.

Junk. Junk. Junk. Junk. Junk. Junk. Junk. Junk. Junk. Junk.

What prompted this complete 180? Seems the pathologist took a look at my blood smear yesterday and was concerned about the higher than normal percentage of blast cells. This could be a strong indicator that the leukemia wasn't completely wiped out by the first round of chemo. They'll have a better indication by Monday whether that it true, but from the way my doc was talking, she seemed to think it was a strong possibility that I'd be up for round two of poison.

About this, I am less than thrilled. I guess knowing nothing going into the first time helped keep me in relatively good spirits. Even though my side effects were manageable, I don't relish going through another week of fevers. Plus, I am concerned about the effect all this poison's having on my internal organs and the possibility that my second go-round of side effects would be worse.

My dad tried to be optimistic and said that, if the leukemia wasn't cleared out, at least they caught it earlier rather than in a few weeks when things would have gotten worse. But right now I can only think about is jumping back on that carousel from Hell of constant IV hook-up, no showers for days, feeling like ass, Napalm mouthwash, and the thought that this is all a really bad omen of things to come in LeukemiaTown.

I can't help but be gripped by nasty foreboding. What if I have the weird, rare, hard-to-cure kind of leukemia? What if I have to do the whole bone marrow transplant deal? What if it doesn't work?

Good thing tonight's an awesome night of television with The Office, 30 Rock, and a brand spanking new Lost. Escapism is a wonderful distraction.

A last note: Thanks to reader and fellow Pajibian dammitjanet for sending me one of the inaugural Pajiba t-shirts. I'll be sending it home to be washed (My sensitive skin demands it.), and I'll proudly wear it as I release Zombie Warrior on her second mission.

Update: So all the prayers and good thoughts I've been soliciting came through. No biopsy today. Appears that the pathologist took a look at three days worth of blood smears and saw that the disconcerting cells from one day actually diminished in percentage each following day. This indicated that the mystery cells were more than likely not affliated with leukemia (otherwise they would have been increasing) and therefore no cause for alarm. I'm going to double check this with my doc, but I think she referred to them as reactionary leukocytes. As long as these percentages don't start climbing and stay at a high level, I should be fine.

So we've gone back a few squares and are now just watching my counts and waiting. I'm not out of the water yet, as the past few days have taught me. But at least I'm not getting poked today.

Get me off this ride; I think I'm going to be sick.

Gotcha!

2008-05-01T08:24:00.003-04:00

Yesterday evening, my doc came in to tell me that plans have changed. The leukemia specialist with whom she consulted trusts the job Zombie Warrior has done on the Stupid Leukemic Zombie Cells and wasn't overly concerned about performing a repeat bone marrow biopsy in the very near future. He thought that waiting a week or two and performing a biopsy in the clinic as an outpatient thing would be more effective.

So biopsy number four is off the table for the immediate future. My pelvic bone heaved a sigh of relief with this news.

This is so typical of the way the Big House operates. Reminds me a little of this fake folded twenty-dollar-bill I guy I know used to have. It was attached to a fishing line. He would lay the bill on a sidewalk and sit near by, waiting for someone to notice it. As soon as some poor schmuck would bend down to pick up what he thought was an unexpected windfall, my friend would give the fishing line a tug and the bill would go flying. Except in this case, I don't mind that the bill got whisked away from me. Lord knows, I wasn't exactly awaiting another drilling into my bone with baited breath.

My doctor also gave me some hopeful news. I am on track to go home. As long as my counts continue to rise, there is the potential of my release from the Big House in a few days. The goal for release is a neutrophil count of at least .500 which would get me out of the neutropenic level. This morning my doc didn't have a count for me but yesterday I was around .121.

Folks, we have a goal towards which to focus our prayers, meditations, chants, positive thoughts, etc.

.500

In other news, Adam Sandler was once on an episode of The Cosby Show. He played one of Theo's buddies who go in together to rent a limo for prom. That's about all I could get from the two minutes I watched of the show before turning it. Adam Sandler on The Cosby Show. Weird.

I think my rash might be getting a little better. Just a smidge less purple-red all over my thighs.

Strange News

2008-04-29T23:21:00.003-04:00

Bone marrow biopsy update: I'm up for biopsy number four. Yup. Apparently, the pathologist just couldn't tell whether the lurking blasts were healthy or diseased. Couldn't tell? Are my leukemia cells super ninjas or something. Sheesh.

Depending on what the leukemia specialist here recommends, I may or may not have the biopsy on Friday. Super.

Amazingly, the doc also delivered some potentially good news. If my counts continue to improve at the same rate they have been, I may be going home soon, possibly the same day as my biopsy. But somehow, with this uncertainty about my chemo's success and yet another biopsy looming, I can't help but be guarded about my happiness.

Someone tell me that Dodge really isn't using an instrumental version of Weezer's "Sweater" to pimp some new vehicle. 'Cause darned if that isn't what the music sounds like.

Yesterday, I whacked off my hair in a little shortie pixie 'do. Previously, I had sported a sorta reverse bob (Yeah, me and Posh!), and lately, me and the hair were quickly parting ways. I figured cutting it short would ease the transition to shaving myself bald. My hairdresser (and my neighbor and my friend) did a great job; I can style it so it looks less sparse.

The rash has spread over my entire body and in some places, gotten worse in color and appearance. I look like some bad sci-fi monster. The docs say the rash will probably last at least a week. So awesome. With my soon to be bald head, I'm going to look like the survivor of some sort of chemical accident.

Man, it just keeps getting better down here in LeukemiaTown.

Sorta Kinda Good News

2008-04-25T15:50:00.006-04:00

I had this nice long post all written out Friday afternoon. Then there was a misunderstanding apparently between WiFi and Blogger; my whole post vanished. Frustrated, I scrapped writing until later. The weekend was busy with visiting old friends and feeling alternately good and crappy. Lots of napping. And I never got around to revisiting the interwebs until now.

Here's the short news about my biopsy: The marrow was mostly free of blast cells. What few blast cells they did see, they were unable to identify. These cells could either be young new cells or the few remaining Stupid Leukemic Cells that apparently managed to avoid detection by the Zombie Warrior.

Monday afternoon, more definitive information about the cells will be available. If the cells are the old diseased ones, the prevailing assumption is that the chemo is taking a little longer to finish the job. Another bone marrow biopsy would be in my near future (YEAH! My pelvic bone will be swiss cheese.) to see if those cells finally get wiped out.

There we are.

Today, I've had a new fun development here in LeukemiaTown. My doctor switched up one of my antibiotics on Friday. Apparently, I'm allergic to this antibiotic. My arms, torso, and thighs are covered in a bright red rash. My face is as red as a strawberry and feels like it's sunburned. There's a weird metallic taste in my mouth.

Yeah, life is good. Whoop. Whoop.

Finally, if anyone wants to add me to a healing ritual or prayer service, go right ahead. I need all the help I can get.

Day Thirteen: I'm Clean

2008-04-24T15:01:00.004-04:00

Last night, I took my first real shower in, oh, I don't even know when. In order to be able to shower, I have to cover my Hickman line with a big patch made from Saran Wrap and medical tape. It's definitely a skill I am going to have to finesse and work on since I'll be going home with "my tubies" and will keep them in for an indefinite amount of time. Adrian helped me slap together my patch this first time, but I'm going to have to start figuring out a system of my own. Adrian also helped me wash my hair and scrub my back and yeah, it was just that sexy. Because folks, when your skin has had days to stew in its own oils, it's not pretty. Downright leperous. All red, spotchy, zitty, flaky. Yum.

I've spending a lot less time connected to my old friend Cletus, the IV stand. I tend to get antibiotic a few times a day and maybe a transfusion. When these aren't happening, my nurse unhooks me and I'm home free. After spending almost two weeks constantly wired up, it's a strange sensation to be able to hop up and dash to the potty without dragging a mechanized hatrack behind you. I am reminded of Morgan Freeman at the end of Shawshank Redemption, physically needing to ask for permission to go pee even after leaving the prison walls.

Today is my second fever free day. There's been something vaguely unsettling about my post-chemo side effects. The way it was originally explained to me, chemotherapy was akin to surviving Hiroshima. So imagine how pleasantly surprising it's been that so far my worst side effects have been fever and a generally icky feeling. But there's a part of me that wonders, "What if the chemo's not working? What if my body's rejecting it? What if my cancer's a super-duper tough strain?" Then of course, I have to tell myself to shut the hell up.

What I envision these last few days of reduced symptoms has meant is that Zombie Warrior's just making her last few passes through the corpse-laden building she is trying to liberate. She stops every once and a while to dispatch a lingering zombie, maybe one trapped under the remains of its undead comrades that she takes out with one shot to his forehead with her boot planted firmly over his snapping jaws. Or maybe the one stuck in a stairwell, bumping aimlessly into the walls; she'd kick open the door, fire off a round, maybe two, and then be on her way to the next floor. She's relying on her pistol mostly, with a free hand close to her machete. Occaisionally, a civilian dashes by, and she steadies herself as she's learned after too many mistakes. There aren't that many zombies left in the building, but she's not going to stop shooting until she knows for sure the halls are free of the Stupid Leukemic Undead.

Now, how does one progress with the clean up of a formerlly zombie infested building? A skid steer with a bulldozer attachment and a bonfire?

This morning I dreamt about being at the beach with my friends, getting hot dogs and fries at the DQ. Immediately upon waking, I began to fret about the combination of "the tubies" and bathing suits.

Tomorrow is the much anticipated bone marrow biopsy to determine how effectively Zombie Warrior has vanquished the Stupid Leukemic Zombie Cells from my body. It's a pretty darn big deal. The elders from my church are coming to pray over me and anoint me with oil. And no, it's not as cultish as it sounds.

I need all the prayers I can get right now.

Day Twelve: Yesterday Was My Birthday

2008-04-23T13:12:00.007-04:00

I'm pretty sure my 33rd birthday trumps my 12th birthday (I got the chicken pox.) in out right suckitude. Ah well, what are you going to do?

Everyone made a great effort to ensure my day was a fun as it could be considering I'm stuck in the hospital recovering from chemotherapy treatments for my frakkin' leukemia. (Can I just say here that, until recently, I always associated leukemia with lil bald-headed children on their Make-A-Wish trip to DisneyWorld? What about adults? Can't I get a sympathy trip to the South of France?) My mom came down and decorated my room with banners and such. Little A sang his version of "Happy Birthday" to me twice, once with extra dancing on the side. Adrian organized a small posse of local friends to descend on my room, filling to capacity, to join me for the resplendent, sugary goodness of Ukrop's birthday cake. I got lots of phone calls and well wishes from friends near and far. I felt loved.

And I ran a fever almost the whole stinking day. Nuts. I did blame the cake for a particularly nasty spike up to 102 in the late afternoon.

And Adrian felt unwell the whole day also, making our hope for a little date night dashed. He spent my entire mini-party with a mask on so as to not infect me, which I know was disappointing to him.

So far, I've been fever-free today (touch wood), and hope to continue to be so. I got some platelets this morning and am getting a transfusion of blood as a I type. Hopefully the platelets will help with my bloody snot issue, which continues to be a problem. Other than that, it's business as usual here in LeukemiaTown; a slow meandering process of wait-and-see prognosis while I make every effort not to dwell on the fact that this disease could haunt me for a long, bloody time and eventually kick my ass. Fun time, let me tell you.

There's a mystery afoot in either the room above or next me. All hours of the day and night (and early morning) furniture is moved around at thunderous levels of scraping and screeching. Because I cannot determine the exact source of the noise, it's debatable if banging on my neighbor's door and shouting, "Dude, what the HELL?" would be a worthwhile venture.

Food and Nutrition continues their campaign to beat my leukemia via margarine.

Word of advice: Never read an Anthony Bourdain book while in the hospital confined to anemic, overcooked hospital food. It's monumentally depressing. The man is such a great food writer his description of haggis makes it sound like a divine delicacy worthy of the finest four star restaurant.

Before I go I want to share this story about Good Morning America co-host Robin Roberts who lost her hair to chemo treatments and recently decided to doff her wig permanently when appearing on television. The clip hit home for me; Roberts' decision is commendable and goes along way to normalizing women who are undergoing chemo. While my hair's not gone yet, when it goes I don't think I'll go the route of naturalistic wigs. Shoot, who will I be trying to fool with fake hair? I don't care enough what people think of me normally, why should I now? Besides, it's going to be summer soon in the RVA, and the last thing I want suffocating my sweaty head is a tight, itchy wig.

One of my favorite quotes from the clip in the story is that the wig is "for everyone else's comfort." And ya'll know how much I give a rip about how comfortable the general population is. Kiss my soon-to-be bald, pink skull, jackasses.

Day Ten: I'm Okay

2008-04-21T17:41:00.005-04:00

Friday, my last bag of chemo was hung and empty by Saturday morning. But by Saturday morning I was already sliding into the post-chemotherapy ickiness. Honestly, it wasn't as bad as I'd anticipated considering the list of terrifying side effects the doctor presented me initially, which including such charming numbers as mouth sores, rash, and extreme, debilitating throat pain. Granted all of these tricks could yet emerge from the bag, but for now the worst I've had to endure came this weekend.

On and off I spiked a fever in the 100 degrees zone, even getting as high as 101 at one point. Ordinarily, my body temp tends to run a little low, around 97.6 or so. When I get a fever over 100, I feel like warmed horsedeath on stick. That's pretty much how my weekend went down: a lot of lying in bed, napping intermittently, feeling weak and puny and really warm. It was a lot like having a bad case of the flu.

Because of my delicate condition, the doctors saw fit to run a nice little gamut of tests (blood, urine, chest x-ray) to make sure I wasn't actually suffering from an outside infection. They ran these tests, not once but twice, and I had to get poked twice for my troubles. Turned out more than likely, my body is simply responding to natural bacterias that we all have, except in my weakened white count state, my body was getting confused and panicking. I like to think of it as the Zombie Warrior getting overzealous and taking out some civilians in her zombie-killin' rampage. Ah, what's a little collateral damage when the greater good is at stake?

Hence, the reason for my lack of interwebbing and e-mailing and posting for the last few days. I didn't feel up to anything but sleeping, reading, and receiving the occasional visitor. In fact, in three days I read four books (All presents from my readership/Pajiba community; much obliged, pardners.). I still have quite a formidable library to tear through; the biggest decision is now what to read next.

Today I've had a little more life in me. I received a transfusion of platelets and another of blood. We're waiting to see if I'll need more platelets as I've developed a charming new symptom since yesterday; every time I blow my nose I get of gore and snot. Considering I've developed a bit of a head cold/allergy thing since arriving in the Big House, I've been blowing my nose a lot and now have this hybrid runny-bloody nose. I've been instructed to not blow my nose for a couple of hours to see if a clot will form, banking on the assumption that every time I trumpet into a tissue, any clot that might have formed is being decimated. Here I sit, sniffling, snorting, and dabbing gingerly at my leaky, bloody nose like a white trash version of Satine from Moulin Rouge. Yeah, I'm bringing the hotness.

Nurse just came and detached me from my IV for the first time since I came here. What a weird feeling. 'Course at midnight I've got to be hooked back up. But hell, just knowing I can go to the bathroom without lugging Cletus in there with me, even for a few hours, is worth it.

Thanks for all you readers out there sticking with me and following my progress, posting comments, and sending e-mails of support (I promise to reply to them SOMEday.). And hey, captain steve, could you repost the URL about the action figures? I was a boob and accidentally deleted your comment.

Over and out from LeukemiaTown.

Day Six: Boring Patient

2008-04-17T21:50:00.004-04:00

According to the medical staff here, I'm pretty boring, but as I am learning, when you are here in The Big House, boring is good. I've not yet had any adverse reactions to my treatments (not to say that I won't) and my counts seem to be progressing as usual. Tonight a nurse offered to bring me a sheet with my blood work up from the last three days; it was an interesting read, most of the information meant very little to me.

Still, my hemoglobin numbers are slowly declining, as anticipated, which means a transfusion probably in the near future. I could tell that my blood count was getting low from the faint wooshing that popped into my ears today. Weird. Now that I know what all of my funky symptoms from the last month or so mean, I can read my body clearer.

Other than an upper respiratory thing, either caused by allergies or a little cold, I feel pretty good. Stir-crazy but good. Let's hope the stuffy nose and cough thing doesn't develop into something worse. I'm drinking lots of water and juice to combat try and combat that. I've got enough to worry about mowing down Stupid Zombie Leukemia Cells; this Zombie Warrior can't be blowing her nose in between kills.

For lunch my husband brought me two bean and cheese burritos from Taco Bell. Because I woke this morning and that's what I wanted to eat. Cheap fast food Meximerican. And it was damn awesome. But first thing on my list when I get paroled from The Big House: an enormous salad with every possible veggie in the salad bar. I'm salivating just thinking about it.

Finally, before Ambien and ER, I want to put out another big fat wet interweb smooch of thanks to all my readers and fellow Pajiba folks who are tearing through my Amazon wish list and showering me with a slew of media options. It's been awesome. Like Christmas, with chemotherapy. And I swear, on my Southern little heart, that I am saving all the packing lists in order to send each one of you a handwritten note. That's my project when I get out of here; it's how we do things here below the Mason-Dixon line.

AND YOU GUYS ROCK! AND I LOVE YOU ALL OF YOU NUTTY AWESOME PEOPLE!

Over and out from LeukemiaTown.

Day Five: Nurse Doofus and the Prisoner

2008-04-16T21:32:00.003-04:00

Yesterday morning was a little rough on this girlie. That nagging, biting fear set in, the one I've managed to keep relatively at bay since being transported to LeukemiaTown. Something compelled me to devour all this printed information on AML that the doctors gave me when I first came, and subsequently I frightened the living bazoobas out of myself. It was like I had been hit with a baseball bat straight to the teeth: I could die. This could kill me. Shit.

So I wandered around my room for some time in a weepy daze, contemplating my own mortality. We all gotta go sometime, but it's some hard funky stuff to actually have the possibility that you might very well kick the bucket soon laid out before you like some sort of gruesome buffet.

Then I got over myself.

Cause dammit; I am a zombie warrior. This is my Resident Evil moment where I go stomping down the hallways of my body taking out those slow, stupid Leukemia Zombie Cells (No Zac Snyder-inspired fast moving undead here.) with aplomb and grace. I am armed to the teeth with chemo weaponry appropriate for mass zombie destruction. You know, the usual goods like that all-purpose AK-47, machete, a couple of pistols strapped to my side, and a fat shotgun on my back. Of course, I am perpetrating this zombicide dressed in a killer red silk dress, kickass boots, and motorcycle jacket. I am fierce.

So now whenever those smooth worms of doubt creep in, I fire up my Zombie Warrior and take her on a stroll through LeukemiaTown to rid my body of some more unwanted stupid cells.

I also think about all my peeps out there in the interwebby and real worlds who are thinking of me and holding me in their heart and prayers.

But putting the Zombie Warrior out on the prowl is pretty darn satisfying.

Last night, The Mister and I enjoyed our version of a datenight which involved lying snuggled together on my cozy hospital bed and watching Sweeney Todd on my laptop. It was wonderful and peaceful and a somewhat return to normalcy.

Until Nurse Doofus arrived. Within five seconds of her entering the room, I could tell I was in for a night. She was practically bobbing off the walls with weird, awkward energy, introducing herself as new to the floor, but not new to nursing. I was not assured by this statement because she then proceeded to futz with my IV machine, seemingly puzzled at its control buttons.

"DON'T MESS WITH MY ARSENAL!" I wanted to shriek at her.

To recap my night with Nurse Doofus: At 2:30 a.m., I was awakened by an innocuous alarm on my IV telling me there was air in the line. It's a quick fix, no problem. It took 15 minutes and two calls to the nurses station to get Nurse Doofus down here to fix it; meanwhile, I am kept awake by incessant beeping. Then a few hours later, she came crashing into my room to take my blood sample. Normally, the nurses come pretty quietly and keep the lights dim while doing a quick blood draw. But no, Nurse Doofus had to bust into the room, exclaim she was going to turn on the lights (which she promptly did), and then proceed to clatter nervously about while she took my blood. And a little while later, Nurse Doofus returned AGAIN to take my vital signs, all the while complaining that normally the care partners do this and fumbling about the equipment like a blind seal.

I didn't get a lot of sleep last night. And if Nurse Doofus materializes again soon, I might give her a taste of the Zombie Warrior.

Tonight, I leave you all with the tantalizing tidbit that a few doors down my hall there is a new patient with an armed correctional officer hanging out in his room. Guess this Big House beats the real one.

Day Three: I am Lance Armstrong

2008-04-14T22:00:00.003-04:00

Last night I managed to get my hands on the ward stationary bike, which is apparently a hot commodity around these parts. But that's the way things go here in the Big House; it's all about who you know. So I hopped on this morning and took a little 25 minute spin. It wasn't a cardiovascular workout by any shape of the imagination, but it did make me feel a little less like I am turning into Jabba the Hutt.

Tonight, my dad came by to sit with me, and we watched and discussed Dancing With The Stars. No where else but in my surreal little universe called LeukemiaTown.

Yesterday was pretty uneventful except for the streams of visitors. That left me pretty pooped (In my normal life, I am hardly a social butterfly.), and with no energy left to blog.

I got several presents from fellow bloggers/Pajibians yesterday. Because YOU GUYS ROCK! I've enjoyed both the CDs this morning (Who knew Feist and Sufjan made for good hospital music?), and I can't wait to crack open the Farscape book. YOU GUYS ROCK! Did I say that already?

My chemo is marching on with little side effects thus far, but I am sure in a week's time I'll be having the REAL fun. Whoop, whoop. How excited am I for this?

Apparently, mouth sores are a common side effect of this chemo, so they've got me rinsing with this Listerine-on-steroids mouthwash to try and prevent sores. It numbs the life out of my tongue. This stuff better work because it is totally gross.

There must be a margarine protocol down in the kitchen because with nearly every meal I get there's a little margarine tub on my tray. Peanut butter and jelly sandwich? Little tub of margarine on the side. Cereal and coffee cake? Margarine. Mac and cheese. Margarine. It's a mystery.

I'm trying to visualize the whole Star Trek metaphor so many of you suggested, and for some reason it's just not working. I think I've got a new idea. More on that tomorrow. It's just about Ambien time.

Day One: Unleash the Chemo Warriors!

2008-04-12T18:24:00.005-04:00

Hanging off of my IV tree are four, count 'em, four bags of fluid. We've got sodium bicarb to support my kidneys and another unit of blood to bolster my numbers. Then there's Ara-C which I consider my chemo infantry (I'll be getting Ara-C for seven straight days.) and another bag of fluid that combines with the chemo. Earlier today, I got an infusion of this tang orange fluid, Idarubicin which I think of as my special forces unit of chemo. Over the next three days, I'll be getting a dose of my special forces. But because they are the stronger, more concentrated chemos, the special forces will also be wrecking my body with more intensity and causing the worst of the side effects.

My big question to all my dear readers is what metaphor should I use for Amanda and Her Chemo Army versus Stupid Leukemia Cells? Humans versus Cylons? Elves versus Orcs? Aslan versus The Snow Queen? X-Men versus the Sentinels? Give me some good ideas, my oh-so-creative compatriots.

For those of you asking about bone marrow transplants and the like: For me a bone marrow transplant is pretty far down the road and not a definite. Still, if you would like to donate in my effort or honor, please by all means. Just be prepared to give your marrow for not just me, but any needy stranger struggling with a bone cancer.

If you aren't prepared to donate marrow someday, please, please PLEASE give blood. So far during my stay here in LeukemiaTown I've had seven blood transfusions, and there are many more in store for this girlie. Yeah, giving blood can be a pain and unpleasant, but right now it's literally saving me. I've had seven strangers help me without even knowing. Transfusions aren't just helping accident victims or surgery patients, but your truly and many other people fighting leukemia.

Donate a pint of blood in my honor, and it would be a more beautiful gift than a bouquet of the most beautiful flowers.

For all you sending comments and messages of well wishes, as well as my interweb buddies who are recounting my plight on their blogs, THANK YOU! XOXOXOXOXOX All the virtual outpouring of love and support frustrates this Southern gal raised to send out Thank You Notes for every good turn. There's just too damn many of you to thank individually, but know that every blessing and good thought that you send touches my heart, boosts my spirits, and sometimes makes me a little weepy.

Today is my mom's birthday.

Rally the Troops

2008-04-11T22:43:00.004-04:00

If you're reading Adrian's blog, news has changed. My attending told me that they are completely sure it's AML, just not sure of the specific subtype. But they've ruled out certain subtypes that would change my course of care.

What does that mean for Our Beloved Heroine?

The induction of chemotherapy will be what's called "3+7". Three days of daily dosing of idarubicin along with Ara-C given continuously for seven days. I'll feel pretty good during this time. Second week is when I feel like charred dog crap (nausea, fever, rash, mouth sores, hair loss, infection) That's when the good times will be rolling.

Day 13 or 14 I'll be tapped for another bone marrow biopsy to see if my marrow is clean of The Stupid Cells. If clean, I'm in remission. If not, more poison juice in the bloodstream.

But right now, I'm just thinking about getting through each day.

Before I go off to sleepytown, my eternal gratitude goes out to all of those who commented, e-mailed, called or dropped by. Normally, I am a pretty introverted gal, but all this socialization has done wonders for my spirits. All your prayers and good support is bolstering me for the battle ahead, in a way helping put on my armor and sheathing my sword for me.

Tomorrow, I mount my steed.

Beginning the Battle Against My Stupid Cells

2008-04-10T23:21:00.002-04:00

Prepare for a brief post, as I am eagerly awaiting my Ambien to start kicking in very soon. Thanks to my smacktacular mom-in-law, I have a shiny iBook on my lap. As long as I feel up to it, I'll be logging onto the interwebs and making my presence known.

Gratitude is pouring out of my soul for all the well wishes you've been posting here and on The Mister's blog. You will never know how much the support you send us through the circuitry uplifts and envelopes us with the love of strangers with generous hearts.

I'm a wee bit sore from the installation of my Hickman line, but the percoset is taking some of the edge off. Even though I'm sore and slightly immobile right now, I appreciate the fact that I am no longer a marionette. The Hickman line is inserted beneath the skin right under my neck, and will allow not only the infusion of chemo, but also the withdraw of blood when they need it. No more sticks and pokes!

This morning I had bone marrow biopsy Round Two, infinitely more pleasant than Round One. Dr. Williams rocked my world by not only doping me with some happy juice, but he numbed me down to the bone. I hardly felt a thing. Now, on the other hand, my hip's feeling pretty rotten and sore. But at least I didn't have to go through that previous nightmare where I felt like someone reached in a yanked on my pelvis bone.

Well, I've gabbed long enough. I'm starting to get carried away to Sleepy Town. If any of y'all out there are cancer survivors or have experience with this hellish road I'll be traveling and have any advice you'd like to generously pass along, please e-mail me. Also, feel free to e-mail me for my room number if you want to send me silly or mushy cards. No flowers, though. Sniff, sniff.

Love you guys. Seriously. We are family.

Acute Leukemia

2008-04-08T19:52:00.003-04:00

Yup.

It's teh fucking SUCK.

And about the same time I am finding all of this out, The Mister points out that I have a huge hole in the butt of my favorite pj pants. Figures.

Tomorrow I am moving to a new hospital, MCV/VCU Massey Cancer Center. I'll keep everyone updated as soon as possible.

Oh and Chris D. from Pajiba, thanks for the flowers buddy. It was one of the brightest spots of my day.

This Sucks

2008-04-07T22:25:00.004-04:00

Hey guys, quick update. I finally got free of my umbilical cord of saline long enough to type a bit on the computer here in my room. I'd like to get some valuable crappy cable TV viewing in before the Ambien kicks in, so this will be brief.

I won't go into too much detail about my experiences 'cause that would just rain on The Mister's parade over at his blog. He's doing a bang up job detailing my medical experiences over the past few months.

Here's the short of it: I'm severely anemic, more than likely aplastic anemia. The docs are searching for a solution to my severely low blood counts-which likely caused all the heart problems I've been having. Since I've been in the hospital, I've been pumped with four units of blood, bringing my counts up slightly, but not to the point where the docs feel good about discharging me.

Today I had a bone marrow biopsy . This was TEH BIG SUCK. I had a pathologist (who bore a striking resemblance to Oliver Platt) basically bore a hole in my hip and jam some big ass needle into my bone to pluck out some marrow. Fucking A that hurt. Felt like someone reaching into my body and yanking really hard on my hipbone. Then kicking me really hard in the ass a few times.

Y'all are all smart people; guess you can figure out the gist of the situation when bone marrow becomes involved.

There's all sorts of tales to tell about my experiences thus far, but I'm pooped from sitting on my ass all day on a hospital bed. At least I'm out of the hospital gown and into my own pj's.

From the bottom of my blood-deprived heart, I want to thank all of my interweb friends for their good wishes and prayers and love. I swear, when I get to the other side of this, I am going to save my pennies for a trip 'round the world to give each one of you a big ole' hug and a baked good.

Thanks to my Richmond friends who have been calling, stopping by, bringing me magazines and YUM doughnuts. I've got some of the bestest buds a gal could ask for.

Once all the news that is fit to print comes to light, I will try my darnedest to blog about it soon-ish.

Over and out from St. Mary's Hospital, room 618

Medical Update

2008-04-05T23:32:00.003-04:00

"The Mister" here, chiming in for Amanda's beloved Interwebby friends...

Amanda was checked in to the hospital this evening. She'll likely be there for about 3 days, and wants to thank all of you for your love and support. I think she's thinking of you (and Alastair) more than of herself.

We've come somewhat closer to a diagnosis: her hemoglobin count was 4.2 , which is dangerously low (a normal adult's is closer to 12). She's undergoing a battery of tests tonight. Now the chicken / egg question: is she simply anemic, or did something cause the anemia?

Her grandmother always said, "We have the bad blood." Guess she was right.

Update: Amanda will now be in the hospital for at least 3 days, probably longer. I'm not going to post any more to her blog: this is her space, not mine. I'll try to be a good boy and post more details on my own blog.

My Son is Sweetness Personified

2008-04-03T20:44:00.003-04:00

This week has been particularly rough for me, health wise. Monday night I started running a low-grade fever that clung to me like a tick until yesterday morning. I would randomly be overcome with chills and cold sweats. At night I could barely sleep for the sweating. I've also developed random bouts of light-headedness; yesterday morning it was so bad Adrian had to stay home for about a hour to supervise me because I was worried I was going to pass out.

Today was a similarly challenging day. In addition to my heart palpitations, I know wander around feeling like my head's in a fishbowl. Poor Little A is starting to become attuned to the fact that his mother is all busted up. He wants to play with the same passion and energy that he shares with his daddy, but more often than not he hears from me, "Mommy's sick" or "Mommy doesn't feel well." My patience with him is limited, especially when I'm spinning with dizziness or stricken with palpitations, and I find myself losing my cool more and more.

This morning we were playing in his room and getting ready for a trip to Target. Little A got up to go downstairs, and I asked him to wait a bit for mommy, that he needed to go slow for me since I didn't feel well. He came over and threw his arms around my neck for an embrace, then stood back and proclaimed with an enormous grin, "Mommy better!" He hugged me a few more times, each with the same satisfied grin that told me he was giving me the same comfort I give him when he bumps his head. And he was. For a few moments, that outpouring of love seemed to block out all the physical discomfort I was having.

I did feel better. For a little while anyway.

Tomorrow I go to a cardiologist for more poking and prodding. Maybe this doctor will be my fairy godmother. More than likely, as my pessimist mind likes to assume, I'm headed for more medical square dancing. Swing your partner! Do-si-do! Paging Dr. House?

Dear readers and interweb buddies, keep me in your thoughts and prayers. It's like I told The Mister: I want my old normal back. When normal meant climbing a flight of stairs without feeling like my chest was on fire and my heart was about to burst.

Does the Almighty Come in Hot Pink?

2008-04-01T20:50:00.005-04:00

A few weeks ago, my husband and I were out driving in the Short Pump area-Ninth Circle of Hell-and we passed by one of the local McChurches. They were displaying the above graphic on banner in front of the building. The banner advertised the latest sermon series, complete with the iconic black-silhouetted, dancing figures. I could not have made this up. In fact, I wished I had. (I'd post a link to some of the sermons in the iGod series, but I've not listened to them and frankly I don't want to give this church's site any additional traffic. I am as insulted by this bullshit as I was with Velocity Church's obnoxious radio ads.)

Dare I ever attempt to know the heart and mind of God, Creator of the Universe, but despite the fact that the iPod is a rockin' little gadget and Apple has done a bang-up job marketing it, somehow I have serious doubts that God wants his followers stumping Him as the Walkman of the 21st century. Are we that sad of a nation that Christianity needs to be marketed with hip tie-ins? We can't have our religion without slapping it with a thick veneer of hipness? Or worse, does the modern American church think that it needs to peddle Christianity like a Superbowl ad? I am perplexed that churches think the teachings of Christ need to be all MySpaced out or nobody will listen.

I hear the penny wisdom from fellow Christians that the means justify the ends, that whatever it takes to fill pews, to "win souls for the Lord", is justifiable. But at some point, this interbreeding of consumerist American culture and Christianity is going to come back to bite us in the ass. Lost will be Jesus' essential core teaches about love, humility, and servanthood, replaced by a happy-slappy , Let's Make Sure Everyone Is Happy With Themselves mantra, come back next Sunday and we'll throw in a new iPod for every conversion. If you get people in the door by promising to be fun and hip, you better continue to fulfill on that promise, which means you run the risk of making entertainment the foundation of church services and sermons. More than likely, that would mean removing any elements of the Christian dogma that don't fit with Big Fun and the Feel Good Band.

I blame Joel Osteen.

My First Tale

2008-03-30T23:37:00.002-04:00

It's not nearly as long and full of turns as the mouse's tale, but it resides at Blog Me A Tale. Go read it. Tell me what you think.

And I swear all subsequent lengthy ramblings posted there will not necessarily involve my kid, despite his being insanely good subject material. Occasionally, I do need to remind myself that there's more to Manda than the Fruit of Her Loom.

Good News; Bad News

2008-03-27T13:38:00.002-04:00

This morning was my follow-up visit with my GP (who, by the way, had totally forgotten why I was even there until he opened up my file to look at my test results).

Breaks down like this:

1. My heart is fine. Not busted. At least those are the preliminary results based on my tests from last week.

2. The doc now has no idea why my heart is acting like a maniac.

He said his first inclination would be to explain it as poor fitness, but I told him that I used to run pretty regularly and this heart palpitation thingee has been stymieing any attempt I make at exercising. Shoot, I can't get up the stairs in my house or walk up a hill without my heart pounding wildly.

My doctor took my resting pulse (about 80 bpm) and then had me run in place. It took less than a minute for my heart rate to shoot up to 144 bpm. I explained to him that I've had lulls in my running and struggled with being out of practice with exercise. But this condition is entirely different. I can't push through the palpitations like I can when I'm a little out of shape. Plus it's affected my every day activities, making it uncomfortable to carry my son, vacuum, rake leaves, even take a stroll around my neighborhood. Plus, the heart palpitations came suddenly upon me. One day I was fine; the next day I felt like my chest was going to explode. (My layman's opinion still places the blame on that frakkin' decongestant I took for a few weeks.)

So now I am off to see a cardiologist next Friday. Hopefully this will get me closer to figuring out a treatment, or at least what the hell is wrong with me. My GP advised me to find some manner of activity that I can do without causing an inordinate amount of strain yet maintain my fitness level. Yeah, good luck with that one. Basically the 10K next weekend is out of the picture.

I'm trying to be optimistic about the fact that the test results were positive, but it doesn't get me any closer to feeling better. My biggest fear is that I'll be passed around from doctor to doctor while my condition remains a mystery. The worst words I could hear from a physician right now is, "Well, I can't find anything wrong with you."

What a Difference a Year Makes: Easter Edition

2008-03-25T21:17:00.003-04:00

Easter 2006 (pardon the teensy pic.)

Easter 2007

Easter 2008

Mix Tape Monday: To My Unrequited

2008-03-24T15:11:00.005-04:00

We weren't meant to be together, except perhaps with the intervention of a certain mischievous imp servant of The Fairy King. So I honed to perfection that purest form of love, and for many years after, it was the only way I knew how to care about another person. These songs are for what was and what never could have been.

1. Pop Song 89- R.E.M.
2. Just Like Heaven- The Cure
3. Pretty in Pink- The Psychedelic Furs
4. La Vie En Rose- Edith Piaf
5. 1234- Feist
6. The World at Large- Modest Mouth
7. Stories I Tell- Toad the Wet Sprocket
8. La Valse D'Amélie [Piano Version]
9. Circle-Edie Brickell and the New Bohemians
10. Never Seen Blue-Tori Amos
11. Pictures of You- The Cure
12. Nearly Lost You-Screaming Trees
13. Keep on the Sunny Side of Life- The Carter Family Singers
14. Unbirthday Song from Alice in Wonderland

Good Friday

2008-03-21T14:48:00.001-04:00

Here was a man

A man who was born in a small village the son of a peasant woman
He grew up in another small village
Until he reached the age of thirty he worked as a carpenter
Then for three years he was a traveling minister
But he never traveled more than two hundred miles from where he was born
And where he did go he usually walked
He never held political office
He never wrote a book
Never bought a home
Never had a family
He never went to college and he never set foot inside a big city
Yes, here was a man
Though he never did one of the things usually associated with greatness
He had no credentials but himself
He had nothing to do with this world
Except through the devine purpose that brought him to this world
While he was still a young man the tide of popular opinion turned against him
Most of his friends ran away
One of them denied him
One of them betrayed him and turned him over to his enemies
Then he went through the mockery of a trial
And was nailed to a cross between two thieves
And even while he was dying his executioners gambled
For the only piece of property that he had in this world
And that was his robe
When he was dead he was taken down from the cross
And laid in a borrowed grave provided by a compassionate friend
More than nineteen centuries have come and gone
And today he's a centerpiece of the human race
Our leader in the column to human destiny
I think I'm well within the mark when I say that all of the armies that ever marched
All of the navies that ever sailed the seas
All of the legislative bodies that ever sat and all of the kings that ever reigned
All of them put together have not affected the life of man on this earth
So powerfully as that one solitary life
Here was a man

-Johnny Cash-

The Book of Seder

2008-03-19T20:52:00.004-04:00

Or One of the Many Reasons My Husband is My Soulmate.

Soon to be part of Whoa, Camel!'s annual Easter postings (or at least until he tires of seeing it published) is a bit of my husband's brilliant satire. I find it wholly amusing that he, a completely nonreligious person, would take such offense at the hypocrisy engulfing the modern American church in its efforts to market Christianity to the masses. As part of his disgust, he views church-sponsored Easter egg hunts as blasphemous towards Christianity's most holiest of holidays. A few years back, out of frustration with the cloying manner in which Easter is now regarded in most Protestant and non-denominational churches, he penned The Book of Seder, a hitherto missing Gospel wherein Jesus sets the precedence for the revered tradition of egg hunts and chocolate gorging:

And so, as the Seder feast approached, Jesus called unto his disciples and said, “I have received news which is my Father’s news, and that is to be given unto you. That you are to collect the eggs of hens throughout all the land, and bring them to the temple on Seder-eve. There the eggs will be emptied without breaking, and brightly colored so as to show the love of my Father.”

And so the disciples set out upon the land to collect the offerings of hens. And it was so, that they rejoined unto each other on Seder-eve at the temple, each with his measure of eggs. And Peter asked, “Lord, how are we to drain the eggs without breaking them?”

Jesus replied, “Does not the ewer empty with even the smallest hole? We shall prick tiny holes in each end, and blow with forceful breath upon one end, that the yolks shall flow forth. And we shall collect the yolks in great urns, so to bake treats for the children.”

And they began to drain the eggs, with Jesus draining many times his measure. But the disciples were discouraged, for their eggs broke. And they asked unto the Lord, “Lord, our eggs are breaking. Soon there will be no more eggs. How can we present broken eggs in the temple?”

Jesus considered this and replied, “Not all eggs need come from hens, though those that do not must be rich indeed. Peter, look in that urn, and bring forth what you find.” And Peter peered into the urn, and drew forth strange material, shiny and smooth. “Lord, what is this treasure you provide us?”

“Plastic.” And so they continued, filling the plastic eggs with small treasures, baked goods beyond measure and coins bearing Caesar’s image. The eggs of hens were brightly painted to capture the splendor of the Seder feast, and the plastic eggs were filled.

And on the morning of Seder, Simon went to fetch a hare for the noon-day feast. And Jesus said unto Simon, “Cook not the hare, for he represents the work of my Father on this day. Nay, praise the hare, and place an egg before him, that you have painted. And when you see a hare before Seder, say unto any who stand near, ‘Happy Easter’, for the Lord my Father has brought the beasts of the land upon the East winds, so to feed his children the Israelites.” And he asked of Luke, who had thus far sat quietly, “Luke, go to Mary’s house, and request from her that which she has been keeping for me.”

And Luke went to Mary’s house, and retrieved Jesus’ bunny-suit. Then Jesus did say, “Let us go to the mall, and pass out our eggs, but hiding several for the children to find. And afterward, let us dine together, as a family might.”

And so Simon went to fetch an ox, which was not protected by the word of God, and they feasted heartily. And afterward they ate chocolate.

**Oh and in case anyone was wondering, we are sending Little A to Saturday's church egg hunt. Because in the face of a toddler who loves to hide and find all manner of things, we become total hypocrites. And unfortunately, my recent healthcapades have left me with little energy to organizing a Good Friday service like I normally do. I feel like poo that the death and resurrection of Christ won't have gotten my full attention this year. Maybe eating a Cadbury Egg will make me feel better.

There's Nothing More Sexy Than a Woman With Darth Vader's Control Panel Strapped to Her Chest

2008-03-18T14:30:00.006-04:00

I survived.

Except now I feel a wee bit under the weather (or as my mother would call it, "peakid"), and the blame probably falls on the irradiated isotopes that are coursing through my bloodstream. Yep, folks; I'm irradiated. Like Spiderman. Except instead of climbing up walls or having super sensitive hearing, I have the chills and managed to puncture my frakkin' tire coming out of my driveway this afternoon AND snap at my kid. Yeah, I'm an awesome superhero.

The testing was weird. With confidence I can attest that I was the youngest patient there by at least twenty years. This resulted in more than a few sideways glances and "What is she doing here?" looks in the waiting area. My first test of the morning was vascular, like an ultrasound for my legs. The results were mixed; I don't have any clots in my veins, but I am indeed, for reasons yet unknown, retaining fluid. After this fairly painless venture, I was whisked into a cubicle where I was instructed to remove my bra (GOOD TIMES). A nurse came in a few minutes later to stick an IV in my arm and shoot me up with the aforementioned isotopes. In this same little room was a posted sign warning of travel by train or plane for three days after testing. Apparently, the levels of radiation in my body could be enough to trigger alerts at safety checkpoints. (AWESOME)

Once enough time had passed allowing the isotopes to reach my heart, I was escorted to a half-breed MRI machine. I laid down on a small bed, was covered with a blanket, and instructed to hold my arms over my head. Then what can only be described as a giant Pac Man attached to a robot arm floated over my chest and took some pictures. I kind of dozed off and on, but I think the whole thing took about 15 or 20 minutes. These were images of my heart at rest, and so logically the next pictures would be of my heart after exertion.

I was taken to a curtained area with a treadmill where a cheery, chatty nurse attached a bunch of electrodes to my bra-less chest. (Nothing like flashing your tits in the face of a stranger. I almost asked for some beads.) She took my BP, and in a rare moment of good news proclaimed that my pressure to be right at 110/60, just slightly above corpse levels. All wired in, I got up on the treadmill and proceeded to walk briskly as the nurse slowly increased the incline. Only a few minutes in and I was already having an episode: shortness of breath, chest pounding and tightening. The nurse was practically squealing with joy at the amount data coming so quickly from my electrode-studded chest. Meanwhile, it's 10:00 a.m. and I had not eaten or drank a single thing. Compounding my palpitations is the fact that I am on the cusp of having a blood sugar episode, potentially resulting in a face plant on the treadmill. Thankfully the torture lasted only a few more minutes (Another nurse came over and shot me full of some more irradiated goodness while I was still jogging.), and I was rewarded with a bottle of orange juice. Then I was off for some more time with Robotic Pac Man. As I laid out underneath the slowly moving Pac Man mouth, the thought, "I took out all of my earrings for this?" ran through my mind.

Final stop on the Cardiac Testing Train was to get outfitted with a Holter monitor. Yes, one of these. But at least I got to put my bra back on. The Hollter monitor was a wee bit bulky and the tape was itchy, but it wasn't too terrible. I had five electrodes stuck to my chest which were connected to a box that hung around my neck. I had to wear this charming device for 24 hours, including while sleeping, and keep a log of my activities and when I felt symptoms. I was totally bringing the electrode hotness, hence the title of this post, a quote from my dear husband regarding my robotic appearance.

Well, there's the story in a nutshell for those of you interested in my medical (mis)adventures. I go back to the doctor next Thursday to discuss the test results which will either show a biological issue with my heart or that my ticker's A-OK and the cause of my palpitations is something else, more than likely hormonal or chemical in nature.

Thanks again, dear readers, for your kind words and prayers of support. I can't describe the sheer awesomeness of having a this network of people flung about the world who care about me.

You are all Teh Rock Saurs in my book.

Five For Friday

2008-03-14T15:27:00.002-04:00

Five Concepts That Are Universally Accepted Amongst Women But Are Also Universally Puzzling To Men

1. Period underwear.

2. Pairs of black shoes are like Lay's Potato Chips. You just can't have one. Or five. Or twelve...

3. Yes, we may bitch about our wide asses or chubby tummies or fat thighs, but dammit there are just times when a girl has to stand in the kitchen and gorge herself stupid on Oreos/cheesecake/ice cream straight from the tub/semi-sweet chocolate chips. We are well aware that it's counterproductive, so don't give us that raised eyebrow of scorn.

4. While we might be married or attached or otherwise off the market, there are times when we just want to get all dolled up, go out for overpriced drinks with the girls, and revel in the thought that we are being ogled.

5. (Contributed by co-editor, ahamos) Late in the evening, when our significant others' brains are addled with fatigue, we feel the need to have deep, thoughtful discussions, particularly about weighty topics like the health and stability and future of our relationships.

Maggots, Michael, you're eating maggots

2008-03-12T21:57:00.003-04:00

The best way I can describe the sensation experienced while viewing the trailer for the fecal abomination known as Lost Boys 2: The Tribe would be that intestinal flu where you feel like you are going to blow chunks and have nasty diarrhea all at the same time.

I don't often give in to the "Raping of my Childhood" hysteria when it comes to remakes, but in my book Lost Boys is sacrosanct.

Behold, the power of an absolute cinematic VBF:

First of all, since when is Lost Boys considered a "cult phenomenon"? Aren't cult films supposed to have achieved notoriety long after initially bombing at the box office? As I recall, Lost Boys was pretty damn successful when it was released in '87.

The original Lost Boys cast contained some credible talent: Dianne Wiest, Edward Herrman, Jason Patric, Keifer, and say what you will about the Coreys but they were good child/teen actors (Don't take my word for it; rent Stand By Me and Lucas.). This new cast looks like a bunch of homogenized extras from One Tree Hill. According to IMDB, the Frog Brothers make their return (i.e. The actors need some cash.) and The Haim, despite all the hand-wringing and weeping on his goofy reality show, managed to weasel his way into a reprise of Sam.

While the makers of LB 2 have blatantly lifted scenes and even specific shots from the original (Did you catch the replay of that moment from LB when a wounded David shrinks from the light after the Frog brothers' attack on his colony?), they've also added a few new elements, namely lots of steamy sex and some illegal street racing action. I wouldn't be surprised if the vampires didn't break out into a hip-hop street dance off in an effort to appeal better to the tastes of the retro-worshiping halfwits that make up its target demographic (None of which were even stars in their mothers' eyes in the Eighties.).

Here's a real kicker, that blonde vampire that looks vaguely like a bargain bin Keifer? He's Angus Sutherland, half-brother to a one Keifer Sutherland. Sigh.

My lawd, they even remade "Cry Little Sister"! Who is responsible for this travesty and where can I send him a flaming bag of poo for his doorstep?

This dreck better go straight to DVD. Otherwise I'll be down at my local multiplex heckling all the jerkoffs in their American Appareal electric blue stirrup pants or fake vintage Target tees queuing up to see this hot tranny mess on the big screen.

It's just so sad.

Nobody better be messing with The Goonies. Or I might just have to pack up Little A and his throwing stars and take a trip to Hollywood. We'd put a hurtin' on some studio suits the likes of which no one has ever seen. By the time we finished, those jokers wouldn't even be fit for zombie consumption.