6/1/09

So far, so good. The end of this chemo cycle is next week. Then there's a big ol' two week gap before the last chemo cycle begins. What a luxury!

They actually build this gap in to the plan. Most often, people get off the schedule because of reactions to medicine  (or non-reactions), or treatment problems, or whatnot. It's pretty rare to actually be ON SCHEDULE! The doctors were a little non-plussed today when talking to him about the next cycle because they're not used to this whole 'on time' thing.

Anyhow, KD has this two week gap, then he starts the last real chemo cycle which lasts 8 weeks. The first three weeks is kind of rough because he has a few IVs and shots and pills all right in a row. Then it mellows out a bit. After that 8 week cycle, he'll go into 'Maintenance' for about 2 years, which is where he takes some pills and gets tests once in a while, but they're basically just watching to make sure the cancer doesn't come back.

And .. (drum roll please) ... he due to go back to work on July 6th! It probably won't be full time because, well let's face it, he just doesn't have it in him to work a full day yet. But he'll be back in action and causing trouble in no time. Yes, he could take longer and go onto long-term disability, but if he does that, company policy is that he would be technically terminated and have to 're-apply' for his job later on (which they would be holding for him). I don't understand it all but it's basically the simplest route to retaining his job and benefits with the least amount of red-tape and arguments.

Don't get me wrong. Phillips/Invivo has be absolutely fantastic about his situation, and even the health insurance company we have is remarkably workable and decent. And all of the doctors have been incredible. The only way this whole thing could have gone any better so far is if he had not gotten cancer to begin with. Really amazing.

For now it's pretty much down to the hum-drum of waiting. A little chemo here, a blood test there, sitting in the clinic for a few hours, feeling tired from a night class, and having to avoid all foods with tomatoes in them. Otherwise we're just waiting for the 'M'-word. By the end of August sometime we may get that last crazy announcement.  "Now you're going into the maintenance cycle." I know it doesn't sound that exciting on its own, but it will be a huge accomplishment deserving for fireworks, a brass band, and at least one B-list celebrity speaker.  We'll see what we can do for a party :-)

5/19/09

Extreme boredom and funked-up taste buds has driven KD to a crazy change in diet. Probably not for the best. He really cracked the whip last year when he was diagnosed with diabetes. He went to a totally healthy, whole-grain, no-sugar, real fruit and veg diet, and not only shoved the diabetes back into the dark, but dropped some unhealthy weight.

Throughout chemo he's been encouraged to eat, eat, eat. It's usually so hard to keep food in the belly while getting treatment. And some of the foods he's been encouraged to eat do not fall into the category of 'healthy'. 

So now that he's doing much better, really on the upswing from this, he's gotten back into bad habits with food. And the pills he's taking have totally destroyed his taste buds. He actually gets grossed out by the thought of eating pizza. Bizarre, I know. Unthinkable actually. Come on! Pizza! But alas it is true. 

He's almost feverish in his quest to find something that actually tastes like it's supposed to, and he'll try just about any grubby, greasy, sugary, messy food he can find. So long story short, his diet is totally shot to hell. I'm constantly amazed when I come home and look in the kitchen at whatever the craving-of-the-day has delivered upon us.

5/11/09

Been a while ... this is the part where everything starts catching up. Where there's no crisis numbing you and making it possible to put off everything until some fictional 'later' time. So yeah, now is later, and real life is still going on. Bills, cats going to the vet, oral surgery, car brake job, etc. 

That's not to say KD's done. He's still tired. He still has aches and pains. He's got a weird taste in his mouth after eating. He takes fourteen pills one day a week. Yes, every Tuesday he takes fourteen little pink pills and rattles like a maraca. This is on top of the other pills he takes. He's going back to the radiology department for a check up soon.

But he is picking things up and trying to find the threads of normal life. He started school again tonight. Pre-calc class two nights a week. He took his mom and her mom out to dinner for Mother's Day. He goes grocery shopping and to the library. He's getting around. Even if he is still self-conscious about the complete lack of hair.

Now with the cancer disappearing and healthy blood ebbing into his bones and veins like waves into tidal pools, he's crossed the tragic coast towards higher ground. But now there's so much to gather up and sort through. Picking up the debris around a bomb blast. Figure out what's worth salvaging. Now the hard part starts. Another hard part that has nothing to do with pills and injections and radiation. 

It's one of those stupid inspirational posters you see in dull offices around the country. Something getting climbed or rafted down, and the phrase "It's not a problem, it's an opportunity." As much as those things make the common man want to gag, the base truth can be just as obvious. Because if something like this doesn't make you pick up your life and shake the box to see what's in there, then nothing will.

4/28/09

Today was interesting to say the least. Poor KD had trouble with the lumbar puncture. He's been jabbed so many times in that one spot that they just couldn't get him right today. Every time they poked him, his leg twitched like a dog getting his belly rubbed. They had to spear him in a different spot. 

This will be the last one for a while though. Now he just takes his pills daily and goes in tot he clinic once a week for labs/blood drawn, and to take another kind of pill. The stuff that they've been injecting into his spinal fluid ... this will now be a really cool and fun pill! Yay!

While KD was being set upon by needles, I was having terrible luck in my car. On the way to the hospital to get him, I got a speeding ticket ... no, I'm not going to complain ... I was doing 49 in a 30 m.p.h. zone. But still, that's a pricey ticket that I can't afford right now.

And good gravy! I almost witnessed a homicide in the parking garage not long after. It takes forever to get out of the garage (I'm sure I've mentioned this at length before), and the guy in front of me was trying to use some kind of parking certificate instead of paying. But his certificate was for the West garage not the East garage. He made a huge fuss and made the toll attendant call her supervisor and everything. It's $3.00 for the love of god! The cars were backed up waiting for more than five minutes and it was flipping hot (so it felt like five hours). 

Two different drivers from back in the line got out of their cars and came up, yelling and cussing at the guy to pay the damn $3.00 and quit holding up the line. Swear to god, I was sure someone was going to go ape-shit. Finally the guy paid and left. I can imagine if it was $10 or something bigger but you can't even get a loaf of bread for this much and it was really self-involved to stop the universe for something so trivial.

Anyhow, I finally managed to get out of the garage, pick up KD from the front entrance (still stoned on the Ativan), and shuffle him home and into bed. He is now parked in front of the TV, groaning and mumbling. At least he can eat. He's experimenting with tabbouleh recipes (yes there's a slight burnt smell in the air from the kitchen). He's not at 100%, but if he eats light meals, he's doing good.

Oh yeah, and he claims the hair is growing back on his head. I see no evidence of this but he says it feels fuzzy :-)  He definitely has a scraggly goatee going on and refuses to trim it. If only I could find the darn camera and catch a picture of him without him flailing his arms in front of the lens....

4/27/09

Tuesday is possibly the last lumbar puncture for a while for KD. Fingers crossed! Last week he was told he's got some scar tissue now so it's a little difficult to do the spinal tap quickly. Yucky yucky yucky. I know I'm supposed to be supportive and nurturing here but I still can't even think about this. 

We'll also be finding out about the rest of this chemo cycle which goes on for eight more weeks. From the paperwork they gave us, it looked like it was supposed to be relatively easy. But he said they said something about it being difficult. Of course, he was so wacked out on Ativan last time that they could have raced him all over the hospital in a wheelchair and he wouldn't have noticed a thing. 

So that is why I am going to talk to the nurses and the PA tomorrow to get the real info on his next few weeks. I'll keep you posted.

Yes, yes... in the mean time my apologies for taking so long to post! I know! Rotten old me. See, I'm a little cranky. I've got a stomach ulcer and have quit coffee for a short (VERY SHORT!) period of time in order to help get that under control.

Cranky doesn't describe it. Seen those pictures of wet cats? The look of irrational, primal blood lust in their eyes? That's been me for the last few days. Between headaches and spontaneous naps, of course. 

Do not fear though. I have not taken out my mood swings, headaches, fatigue, or general lunacy on KD. He's been living in his chair quite peacefully, switching between mooching around online and watching endless movies. I took him out to eat tonight (and good lord did he eat!) because he's usually kind of icky-tummy for a few days after a lumbar puncture and probably won't feel up to it. He is complaining about getting a bit heavy around the middle actually. Which is great if you think about it. (I'd take a picture and post it, but he keeps the cameras out of my reach for some crazy reason.)

4/22/09

Apparently a cold, wet dog nose feels weird pressed against the top of your bald head. I would not have guessed this :-)

The prophesies have come true and KD is down to the last stubble of his hair. There is distinct glare in the sunlight off his dome. Well, almost all gone. He's got this funny little mustache at the back of his neck just dark enough to look like he turned around too fast ... like Daffy Duck leaving his bill around the back of his head.

He had a lumbar puncture Tuesday as scheduled. Which means for the last two days he's been a zombie. And not the cool Hollywood kind of zombie that wears dark sunglasses and has snappy one-liners before killing people. At least he's back to eating again (no, not brains!), which is always a good sign. The medication they inject while doing a lumbar puncture makes him a little woozy and it's hard for him to feel when he's hungry.

He is sleeping a lot still. The one cat has always slept on him but she's a furry bowling ball and is little trouble. The other cat recently decided his new 'spot' is on the shelf next to KD's bed. This is a BIG cat. He snores. He wakes up meowing. He licks and grumbles often. He's up and down a dozen times a day eating and patrolling the windowsills. So needless to say this new roommate does not thrill KD. I am envisioning an eviction notice for the furry squatter. 

4/18/09

It's been a bit somber about the house lately. KD's been tired and unfocused from the chemo.

Also, the family friend with cancer that I mentioned last post ... she passed away that night. This is not the first in our extended family and community that we lost to cancer recently. But this is the first since he's been diagnosed. It has an entirely different meaning from this side of the playing field. Death is still a tragedy, but surviving while others do not is somehow much more difficult to accept.

And in a twisted way, since KD is doing so well, things seem to be getting worse. Merely by comparison, I know. But when you're in a crisis, it's easy to shrug off late mortgage payments, and worries about work, and mowing the lawn. Now that he's functioning and capable of participating in the mundane drudgery, all of these silly things still feel silly and bothersome instead of real issues that need to be dealt with. 

On the other hand, we still have to laugh at daily absurdities. Like our ongoing argument about whether his hair is finally all falling out. First of all, there's just not that much to begin with, so what does it matter if it all falls out. And secondly, they've been telling us it would fall out totally since the very beginning. Every new treatment, they would warn us that this was the time it would all go. And still not much to be scared of. It's been buzzed off, sure. And it's sparser than ever. But it's there and he can't stop playing with the fuzz. 

Oh my word, with his energy back, he is a non-stop cacophony of sounds. From tapping and slapping his head like a honeydew melon, to burping and hiccuping uncontrollably, to breaking things and constantly moving stuff around (restless energy and cabin fever are making him a little strange). He talks to the dogs and cats. Talks to the TV. Plays his guitar. Paces around the house and yard aimlessly. He's constantly cooking or washing dishes or opening and closing the fridge and cabinets.  He even mowed the lawn while I was out the other day (you damn well know I wouldn't let him do that if I was home, right?). The only time it's quiet is when he's asleep now. Not enough energy to go back to work, but way too much to sit around at home. I wonder if he's too old to enroll in an after school program or summer camp :-)