Thursday, October 09, 2008

Ms. Guinea Pig

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!


Jeremy said...

Sorry you have to suffer through roaming hoards of frat boys. As if cancer and bullshit unemployment isn't enough to deal with, now you've got fratholes to deal with. Super.

And for the record, Jack Mackenroth TOTALLY deserved to win last season, but he has to bow out and instead they give it to the one that looks like he's having a constant yet mild seizure. Bitch, please.

Julie said...

I fucking HATE Kenley. "Oh, they sabotaged me on the runway, it had nothing to do with the fact that my dress looked like a costume from Eureka's Castle!" I'm on team Korto.

You are cancer patient extraordinaire my dear 'Bama, feel better!

Rusty said...

I've been a Guinea Pig before, but as a normal control in some very boring NIH studies, the most interesting of which involved an electric current being sent through my head that made me lose control of one hand. It had to do with ADD/ADHD

Glad to know that you are getting the kind of attentive nurses that you totally deserve. Clearly, your previous ones did not know the kind of awesome warrior woman they were dealing with.

Megan said...

About time you got a break spinning the Wheel-O-Side-Effects. I hope it helped to be watched so closely and have more information (and hopefully also more sense of control) about your own damn body. I wish I believed more in prayer, but there are a whole lot of very sincere wishes and thoughts heading your way from a total stranger - can't hurt, can it?

Geekbride said...

I just said another prayer for you. Good luck with the trial. And see if someone can tell the frat boys to shut it. You need your rest and it sounds like they're being pretty rude!

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