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Whoa, Camel!



Manda's random rants and ruminations.



Updated: 2018-03-05T16:21:01.716-05:00

 



34 Comments

2009-03-26T00:57:42.114-04:00

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Barbara Bush is my Neighbor

2009-03-04T23:31:55.537-05:00

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

2009-03-02T23:33:27.485-05:00

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. Gr[...]



Hospital City, USA

2009-03-01T10:21:37.234-05:00

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 [...]



The Coronation of The Sun King

2009-01-20T21:13:47.939-05:00

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.

2009-01-16T10:42:31.360-05:00

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!

2009-01-14T23:03:08.772-05:00

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...

2008-12-26T18:15:13.805-05:00

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.

2008-12-24T13:08:21.500-05:00

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 [...]



Pop Culture Cancer

2008-11-18T12:03:01.826-05:00

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

2008-11-10T15:36:54.812-05:00

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

2008-11-08T15:13:02.700-05:00

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

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The good life @ Yahoo! Video



Space Invaders

2008-11-05T13:30:21.029-05:00

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, figh[...]



Wake me when it's over

2008-11-04T15:31:45.898-05:00

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

2008-11-03T14:38:17.472-05:00

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 sup[...]



My butt's numb

2008-10-30T12:51:05.338-04:00

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

2008-10-27T21:26:10.912-04:00

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

2008-10-26T23:03:58.063-04:00

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

2008-10-21T09:21:19.769-04:00

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

2008-10-16T17:53:44.318-04:00

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

2008-10-16T15:32:53.787-04:00

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

2008-10-16T21:42:05.295-04:00

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

2008-10-13T23:28:41.960-04:00

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

2008-10-09T14:33:54.087-04:00

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[...]



The Hits Just Keep On Coming

2008-10-07T10:07:42.399-04:00

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[...]