3/31/09

Well today was fun. Please note sarcasm here. 

(Yes I didn't post yesterday. Let's face it, I was sick of making up stuff to entertain everyone :-)

They scheduled KD's lumbar puncture for today instead of yesterday. This is on top of Day One of radiation therapy. So I dropped him off at Shands first thing (I had my own dental relay race to run unfortunately) and he stopped in the clinic for his vitals and labs. Apparently only one person there knew he had to leave right away for his radiology appointment. And this person was not involved with his visit at all. So he had to be pushy about getting things done so he could race down to the shuttle stop for a ride down the street to the Cancer Center for his radiation treatment. 

Then he had to hop the shuttle back to the clinic and explain once again why he magically disappeared on them. He had to wait a bit for his lumbar puncture (and Ativan shot). By the time I got there to pick him up, he was sleepy and drugged and giggling. Now he's tired, with a raging headache.

Oh and he's convinced he's turning red. I don't know why. He looks a bit tanner but he's been getting outside more so it's hard to be sure. 

Anyhow, this is Day One of this 12 week cycle. Two weeks of daily radiation. Weekly lumbar punctures for five weeks, then switching to weekly pills. And daily chemo pills for 70 days. These people sure know what they're doing. This schedule is incredibly precise. It's been working so far, so we're going along to see what happens. 

If you're trying to get him on the phone or online, have a little patience. I suspect he'll spend a lot of the next few weeks sleeping or wishing he was sleeping. In the mean time, good wishes and prayers are always welcome. He's hit a little bit of a low spot by now. His life hasn't been normal since around Thanksgiving because of his illness. He's far enough from 'normal' now that he feels like he may never get back to real life. His health is doing well. It's his spirit that's feeling the pressure of the cancer right now.

3/29/09

This was KD's last day to relax and feel normal before this next crazy phase of chemo begins. We went downtown to the art festival for a while. It was a gorgeous day. (And it was my trick to get him to walk around a bit and get exercise.) Plus it was impossible to park within a two mile radius.

Then we over-indulged in pizza because who knows if he'll actually get sick from the radiation treatment or not. It's pretty heavy potentially, so we're just going into this with the belief that there will be an end to whatever is about to happen. 

Not that he's getting too depressed about it (much). He's had a pretty charmed experience with chemo and treatments so far. Either his luck will hold and this will be one for the textbooks, or he will eventually get a bit sick. Whatever happens, he's had a great time of it so far (compared to what it should be like, I suppose).

So FYI in case you want to call or email in the next few days... Monday is a lumbar puncture and we review his treatment schedule for the next 12 weeks. Then Tuesday he goes to radiology for his first cranial radiation treatment. It sounds less B-movie hoaky to say 'cranial radiation'. 'Brain zapping' seems silly. But that's it basically.

Two weeks of brain zapping might solve the rest of his problem. After that, his treatments seem to ease up in frequency and intensity. And hope of all hopes ... by August we might actually hear the magic words "maintenance cycle", which is where he's not doing actual chemo. Just some preventative stuff while they watch him for 2 years to see if he really is cancer-free.  Then it's party time!

3/28/09

As Dashiell Hammett said, "The next day brought happenings."

Not exciting happenings, but something to do at least. Super early clinic appointment for KD to get blood. Two units. There were a few others in the clinic because it was Saturday. Patients only get scheduled on the weekends if it's something that just can't wait. 

He came home and had a long nap. Since he had no coffee this morning, he spent the rest of the day in a daze in front of the TV. I'd like to say the TV was actually on, but it was not. 

Hopefully the blood will have him perked up tomorrow. Well, I mean, hopefully for him. When he's perky enough, he starts causing trouble. We'll see what happenings tomorrow brings :-)

3/27/09

A decision is finally in. KD has agreed to do the cranial radiation. Scary but at least it's a decision. The list of possible side effects is a long one. But frankly, the stuff he's already been having also has a huge list of possible side effects. So what's the real loss, right? It's only a brain.

Looking at his schedule, this next cycle of treatment (12 weeks long) is probably the most invasive and grueling so far. In fact, only the first 30 days of it seem to be the tough part. He's got two weeks of daily cranial radiation (yes radiation directly to his brain box!), and lumbar punctures every week for 5 weeks. With the lumbar punctures, they don't just remove some spinal fluid for testing. They also inject methotrexate (look it up on Wikipedia if you want a headache and a lot of technical info about that one). This is on top of a regimen of chemo pills.

He went back to the radiology department today to have a fitting. They customized a pillow for his neck and made a light-weight mask molded for his face. He did NOT like that experience at all. He's due back on Tuesday to start the fun. The radiation itself only takes fifteen minutes or so. Every day. For two weeks. 

Oh and he's got to go the regular clinic for a lumbar puncture Monday. Oh, and Saturday (yes, tomorrow) he's got to go in to get a blood transfusion. Who is alert and mobile at 8:00AM on a Saturday? Not me :-P

He was thrilled to receive a package today of cool hats. I don't mean temperature, I mean stylishness. Of all things he's suffered so far, I think he misses his utter coolness the most. Now he can wear the Misfits and Dead Kennedys hats to restore some of that. Both at the same time if he's desperate. 

At the moment he is neutropenic, which is where he's on the special diet of no fresh fruits or veggies, and has to be careful around sick people, animals, and anything with bacteria. This goes hand-in-hand with the need for blood. His immune system dips below safe levels because his bone marrow is suppressed. It'll probably rebound once he gets blood. Until then, keep your germs to yourself :-)

3/25/09

I have to admit I seriously kicked ass today. KD's been groaning and complaining about aching muscles for a week now but he won't do anything. His exercise consists of pacing back and forth in the back yard. I told you he won't take a walk in the neighborhood because "people might see him."

Well after I took the dogs for a walk this evening, I took KD on a walk. I didn't put him on a leash, but I did threaten to. He was a cranky, surly baby about it. He was grouchy the whole walk. I'm sure he'll complain about it for days.

Let's face it though, he was getting kind of lazy. Yes, I know he has cancer. Believe me... I KNOW that. But he's still turning into a couch potato. So whether he likes it or not, he's just signed up with a trainer named Radha who will be dragging his lazy behind out for real walks.

As for the bigger dilemma about the radiation therapy, that still hangs in the balance. I'll let you know once a decision has been made. We've got a few more days to argue about it and pretend like we know what we're arguing about. 

In the mean time, he's almost done the seasons of Weeds we have on DVD. Anyone have suggestions for something else for him to try next? (Funny is best) He loved Scrubs, and got to like The Office. Any suggestions would be welcome...

3/24/09

It was a long and mostly pointless morning at the clinic today. KD got his Vincristine IV and his labs came back looking really well. But we had hoped to talk to his PA about the cranial radiation, and she wasn't in today.

The debate is still raging on about the radiation therapy. There doesn't seem to be a good side to either choice... it's all about trusting the statistics at this point. I mean really, when it comes right down to it, REALLY they have no idea what causes cancer. They can't tell you what throws that switch. They just don't.

So it's a numbers game. They know a few things that are 99.999% sure of inducing some kind of cancer. Like radiation or benzene. They know variables that increase the risk. Like the Philadelphia gene. But that's it. So how can anyone say what cures cancer? (Yeah all of you voodoo doctors, hippies, and naturopaths sit down. It's just as random either way you treat it.)

Now it's a matter of figuring out what risk is acceptable and what risk is pushing the limit. Not about the quantity of life but the quality. Radiation therapy might reduce the risk of leukemia relapse over the next five years. Studies have shown that. But what about the brain tumors that may start popping up in twenty years as a result? Risk now that his thirty-year-old body has the strength to bounce back on its own, or risk that his fifty-year-old body won't be able to recover from minor brain tumor surgery?

There's no real answer. There's only the choice he makes. There's only the hope he has, and the fear he has to live with for years to come. The waiting to see what happens after the choice is made. Maybe holding his breath at every doctor's visit. Worrying about every headache. Wondering if he's just tired or the leukemia is eating away at him from inside his bones.

Yeah... pedantic. Round and round in circles. There's no answer. I could go on for pages and pages like this. That's how it is. Round and round. 

Fortunately he's discovered my DVD set of old Loony Toons ... classic Buggs Bunny, Elmer Fudd, etc. Had him laughing out loud :-)

3/23/09

Well, this may be one of the first tough moments of the road we're going down. We met with the doctors at the radiology department about radiation therapy. Cranial radiation to be exact. It's definitely recommended, and part of his regimen, but it's not forced. And it has it's issues.

Yes, it is radiation directly to the brain area. All of his hair will fall out. He may have some temporary or not-so-temporary damage to his cognitive skills. There is a chance of getting another kind of cancer as a result of this therapy. I think the rate is that 5% of patients get minor, treatable tumors at the surface of the brain, and a much smaller percentage get more complicated tumors deeper in the brain area. Small chance of cataracts. 

The overall rate of relapse due to NOT having radio-therapy is about 43%. But the study quoted from that didn't say if the leukemia relapsed in the bone marrow or in the spinal fluid (which is what the radiation therapy would be targeting). 

And to be fair to the statistics, there just isn't enough information on KD's age group. The overwhelming number of people with ALL are younger than 6 or older than 50. And those two age groups have wildly different recovery rates for the different kinds of treatment. And much different side effects. There just isn't a whole lot of information that applies to KD's age group.

I know, that's a lot of numbers and not a lot about what is going on yet. We are going to talk to our regular doctors at the clinic tomorrow to see if they have statistics focused on KD's type of cancer and/or age group. At the radiology department they treat all kinds of cancer so don't have all of the data memorized for his case. Maybe we'll be closer to a decision tomorrow. 

Basically he's damned if he does and damned if he doesn't, but which way will he be more damned?

3/22/09

Gosh, did I skip another post yesterday? Is this becoming a bad habit? Nah ... I take it back. I'm merely saving everyone from having to read yet another boring post about how KD is doing okay, eating a lot, and getting into trouble.

Okay, the truth is that I went out Friday night AND Saturday night so instead of sitting here typing at the computer, I spent three hours each night in front of my closet yelling, "I have nothing to wear! Everything looks stupid on me! I'm going to die!"

Meanwhile KD is still taking it easy and eating A LOT! He's finished his The Office marathon and has switched to Weeds. He's restrung his guitar. He is doing laundry and listening to old old old CDs he found. He's learning to cook and totally rearranging my kitchen (grrrrrrrr....). 

Tomorrow is our consult appointment with the radiology department to talk about his next cycle of chemo which starts at the beginning of April. This should be interesting. By 'interesting', I mean 'scary'. Yikes! I am NOT picturing something out of one of those old black and white Frankenstein movies, I swear :-)

3/20/09

Yes, I skipped another day blogging yesterday. I had to go to bed early for some dental work this morning.

So I'm sitting there in the chair (way too early) with all twenty of the dentist's and assistant's fingers in my mouth, as well as several large tools, and Dr. G is trying desperately to put a few stitches in my gum with so little space in there. My face is being pulled off my head. The sutures are tearing my gum. I taste blood. And I cannot help but cherish the irony of the song that came on the radio right then... Shania Twain singing 'Man, I Feel Like a Woman'. 

Totally jumping topic ... It must be this insane amount of pollen screwing up KD's fragile system, but he's had a few nose bleeds in the last few day. And now he's developed a funny little rash on his forearm which could be from where the cat curled up with him last night. 

The problem is, if this keeps up and he gets another nose bleed, it could mean his platelets are too low to handle the bother to his system. That mean an impromptu visit to the clinic for an unscheduled unit of blood.

Other than little things like that, everything is hunky-dorey over this way. KD is bored out of his cotton-picking mind. He's been sorting through old CDs and (gasp!) cassette tapes for lack of anything interesting to do. I may have to start sending him to daycare to keep him occupied.

3/18/09

KD is still having trouble accepting his bald head. He swipes his hands along his head and acts like he's pulling his pony tail back tightly. Then he looks puzzled. As if his hair just disappeared.

Sometimes I come into the room and he's slapping the top of his head gently not unlike an orangutan. He pats it and pokes it and scratches it and sneaks up on it to swirl his fingers over the stubble. But it's just not there. Can you imagine? He's been letting his hair grow out since he was about fourteen. Almost twenty years. And now it's just not there.

Actually it's trying to grow in a bit. Not evenly. and not anything like it used to be. Half of it fell out completely, and of what's left, nine out of ten hairs are just sitting there like hippies at a rally. But that last one out of every ten is really trying to gain altitude. These guys are wispier than his sturdy, glossy Mexican-Indian hairs. But they're growing. And instead if growing outward from his head, they're all growing straight up.

Yeah, yeah, you say. Enough about his hair or lack of hair. What else is going on with him? Not much really. The chemo regimen he's on is a total of seven months, with an additional two years of 'maintenance' where they just check up on him. We're in the third month which was almost the same schedule of chemo treatments as the second month. It's just not that interesting because we've been through this song and dance once already.

Next month is cranial radiation (you have to imagine me saying that in a spooky voice because it looks weird when I type it in a spooky voice :-)

3/17/09

What was supposed to be a routine day at Shands just never quite remains routine. Something ALWAYS happens.

Today was an IV drip of chemo and a shot of another kind of chemo. The Vincristine drip was fine. His labs/blood looked fine. They were ready to give him the L-Asparaginase shot. Now like I said, they have these procedures to check things. Even if they've checked them a hundred times, they still have to check again. And it's a good thing.

Before they give the L-Asp shot, they test for allergies. They draw a circle on his arm with a magic marker and inject just a tiny bit under his skin there. Then they wait. If it swells up or gets bumpy (or turns black or whatever) they know not to give him the rest of the dose. 

KD's had this before. Last month he had L-Asp shots a few times. No problem. Today he swelled up inside that circle. They couldn't give him the shot. Apparently he's developed an antibody to the L-Asp. Wacko!

No big deal I guess. L-Asp is intended to starve the cancer cells. All cells need an enzyme (asparaginase) in order to replicate. Normal cells can make their own. Cancerous cells need to draw it from around them. The L-Asp prevents the cancer cells from absorbing it. So they can't replicate and eventually die. Yay!

We'll see what the docs cook up for the next visit to make life fun :-)

3/16/09

Spring is in the air and a girl's thoughts turn to shoe shopping. 

KD is also feeling better and returning to his old self along with the weather. I now have to harass him to drink water and eat real food. If you're friends with him on Facebook, you'll have noticed his lunch of coffee fudge ice cream. Very healthy!

I suppose this adventurous spirit of his is a good thing but it means more work for me. I have to chase him down to be sure he takes his pills. And he's getting quite uppity about going to the clinic appointments. I suspect it will come down to a fight one morning soon. 

It's too bad because he really needs to go. He's had a little reaction to the bandage that is taped over his PICC line site on his arm. He's got these yucky blistery things around the edges. They tell him to put hydrocortisone creme on them to keep the swelling down, but anyone who knows KD, knows he has little tolerance for anything itchy. I'm tempted to make him sleep in mittens so he doesn't itch the blisters raw and then gnaw off his arm in frustration.

Tuesday is a long day at Shands. Not looking forward to it. But then, neither of us are looking forward to next month and the start of the next cycle of chemo. It's the cranial radiation one, and it's kind of intimidating. Yoinks!

3/15/09

Besides being an Iron Maiden song, and the day Julius Caesar was stabbed to death, the Ides of March is also the anniversary of quite a few musician's births:

Mike Love, Beach Boys

Dee Snyder, Twisted Sister

Phil Lesh, Grateful Dead

Bret Michaels, Poison

Mark Hoppus, Blink-182

and more....

And not unrelated, also the birthday of Jimmy Swaggart who, aside from the tiny problem with prostitutes, was also dead set against Christian rock and metal music. Again with those beautiful examples of synchronicity :-)

All in all, it's probably a good thing if we can all get past March 15th without anything bad happening. It was quite peaceful here at the McClellan homestead.

Mostly it was peaceful because I slept in very late. Okay, I had a teensy tinsy hangover. You may have noticed I didn't blog last night. We went to a friend's birthday party (happy 48th, Duke!). There was wine to be had. And cake. So I did partaketh in the bounty and got a bit tipsy. 

Anyway, the point was that since KD is not allowed alcohol because of his medication, he was a natural designated driver, and he got a nice quiet morning today without me rattling around the house at the crack of dawn cleaning and making a racket.

Quite a few friends at the party last night hadn't seen him in person without the infamous hair, so there was some rubbing of his head and some teasing. Everyone had suggestions on what to do to compensate for the hair. Nose rings, giant earrings, tattoos, etc etc. 

Maybe it was too quiet today, because I wandered out to the kitchen at one point to find him cleaning the fridge. No really! I'm not joking. He took everything out of it (not much in there actually) and had the thing all sparkly and white and clean. I think it was a hint that I needed to go shopping and fill it up again :-)

Tuesday is the next clinic day where he'll get labs drawn, a Vincrisitne drip, and a shot of L-Asparaginase. Woo-hoo and a load of fun! He's just starting to appreciate the bald head with the weather warming up. On the days it hits in the 90's, he splashes some cold waster on his scalp and it cools him off instantly. The upcoming chemo might slow it down, but his hair has been valiantly trying to grow in a little. Well, the fuzzy bristle is a little longer that it was the day he got out of the hospital.

Feel free to drop him an email, or give him a call. Or track him down on Facebook or MySpace. I think he's got a little cabin fever. :-)

3/13/09

It was jam-packed in the clinic today, so I heard. They had over 30 patients to see before the doctors left for a conference thingy at 1:00. So it was madness. If you weren't actively gushing blood or other bodily fluids, you were poked a bit and sent on your way. KD got out of there fairly quickly.

Then we drove out to Alachua to take my Grandmother to lunch. She's visiting from Philadelphia and hadn't seen KD yet. She loves him with no hair. He says it really brings out his beautiful smile. You can imagine that KD was quite pink from blushing uncomfortably :-)

Not to plug a business, but we went to the New York Pizza Plus that opened in Alachua. We live right near the Gainesville one and already love the pizza. But I had to really yum it up today over their non-pizza dishes. And as usual, KD ate like there was never going to be another plate of eggplant parmigiana ever ever ever.

Of course, all the eating and talking wore him out so he had a nap once we got home. He just wears down faster than ever because his body is working so hard to recover on the inside. The real test is tomorrow for another friend's birthday. Hopefully he can have a good time without completely draining himself again.

3/12/09

KD is probably one of the few cancer patients in his stage that is willing and able to eat. But this is just unhealthy if you ask me. He's become addicted to trawling YouTube for cooking shows. The good, the bad, and the ugly... he's been watching them all.

I came home to find out we were going to buy a food processor soon since all of the cooks had them. Which came to the usual debate over the pros and cons of sweet potatoes (I love them but he is suspicious of them). And of course from there came the even bigger debate about insects ... I think they are not and never should be food, where he says he would probably try one for the hell of it. Yuck!

But at least he's able to eat. No one can tell us why he's not nauseous like 95% of the other chemo patients. He eats like a horse some days. As if he really can't feel that sensation that says he's full. I worry he might burst like a goldfish one day. Again... Yuck!

One more day of chemo and then a three day weekend. Woo-hoo!

3/11/09

Another no-so-exciting day behind us. 

At the clinic this morning there was a kid (about 12?) in a wheelchair, that threw a tantrum and didn't want any of the nurses to touch him. It unnerved KD. It unnerved everyone in the clinic. But KD made one of his rare comments revealing how much he hates this process he's going through. He said everything the kid was yelling was how he felt. He was sick of being poked and touched and jabbed. He wanted to just go home and never come back to the hospital. KD agreed with it all. 

He had a sick belly after the chemo today also which sort of builds up on these every-day-treatment weeks. By Friday he's usually completely a zombie. 

But by the evening the nausea faded. We went to Las Margaritas (yay! love that place!) for dinner and KD was a human vacuum cleaner with the food. Ate everything in front of himself, and then whatever was left on my plate. It was also Mariachi Night (and sort of empty) so we were treated to a live show at our table. I am insecure enough eating in public with my braces. I did not need a mariachi band crowded around watching us eat while they yipped and ay-ay-ay-ay-ed. Thanks for that KD :-P

Two more days of chemo, then a three day weekend. Next week is only two days of heavier treatment. Can't wait until his consult appointment with the radiology department to see what that's all about. It's amazing to think that three months ago the biggest thing going on was trying to get through the Christmas season. I would almost rather try to go shopping at the mall the week before Christmas than have to go to radiology. Cranial radiation therapy seems pretty close to the looped holiday music at the mall anyhow. I'll keep you posted once we find out which is worse.

3/10/08

Okay, today in history... March 10th 1876 ... Alexander Graham Bell made the first phone call ever. (He called Thomas Watson to say "Waasss-uuuuuup?")

March 10th 1982 ... 'Syzygy' - all 9 planets were gathered on the same side of the sun in almost a straight line.

What do these two events have in common, and why are they on the same day? If you read the Davinci Code, you might be able to piece together the clues from the deeply complex and subtle circular nature of events both under the control of human function and outside of our influence.

Yes, syzygy is really a word (awesome idea for Scrabble next time you have that hand of tiles that really sucks). It is when three or more planets are lined up along an axis, usually including the sun. And actually Alex called up Tommy to see if he wanted to go grab a pizza and a movie. 

But the deeper meaning of this strange coincidence of both of these events falling on this day is even more astounding. Lean closer and I'll tell you... closer... I have to whisper it ...

It means "get your sh*t together ... and call KD ...."

Hmmmmm...... Okay I am not Nostradamus... that's just my interpretation. But KD is bored and could use a little entertainment (in short bursts) from anyone wanting to cheer up his days. He's moved from watching The Office on DVD to wallowing on YouTube now. This is a bad sign :-)

More chemo tomorrow. More chemo the day after. And the day after. It makes his tummy funny and he burps wicked crazy all day. Other than that, he's got good energy and is mooching around, always on the verge of getting into trouble. I think he's starting to miss work and friends and friends at work etc etc. 

Just remember this word 'syzygy' (pronounced siz'i jee) and see if you can casually use it in conversation this week. If you are successful I suggest rewarding yourself handsomely ... buy yourself a pint of beer or a pint of Ben & Jerry's (maybe their next flavor should be Beer Goggles, hm?).

Alright, that's enough silliness for the night. Just remember ... Alex & Tommy and syzygy ... get your sh*t together and call KD.

3/9/09

Tomorrow starts another round of daily chemo, so although KD has enough energy to cause trouble, he'll probably be sleeping the rest of the week. We're back to the daily injections for this week. Next week is the Tuesday & Friday only. We've also got an appointment with the radiology department to consult for his cranial radiation therapy which starts next month. I can tell KD is a bit nervous about that.

When we first checked him into the hospital, he felt so ill that he barely cared what they did to him. The 8-hour wait in the emergency room while they did all the paperwork and blood tests seemed like torture to me but he hardly remembers it. I remember everything about that room, from the public service announcement posters on the walls to the pink press-on fingernail on the floor next to the trash can. Anything to avoid looking at KD hunched on the bed looking green and shrunken and fragile.

I don't remember feeling the fear then. I felt confident that 'they' would know how to fix him. I can remember the fear now. I suppose it's the same way that you can't tell the Earth is round when you're standing on it. You're so close and it's so huge, you can't see it for what it is. 

Now with his bone marrow at 0% saturation of cancer cells, and the end in sight (yes, actually about 5 months away), it's almost possible to feel like this is real and it's going to be okay. Maybe I can start breathing again. 

But I still wait for that next clinic visit, the next blood test, the next nurse that walks into the room with the worried look on her face. Because it's not over yet. It won't be over in five months. It might be over after the two years of 'maintenance' treatment. Maybe not. There will probably always be that fear of this coming back. Even when the cancer is gone, the fear will remain.

So then what? Isn't that the point of life? At any moment, it may be that time. You get the big phone call from God? So what changed? You don't live like that. In fear. You exist. But you don't live. After cancer, after chemo, after the body is healed, there's so much more healing to do. I think that's why people who have survived these sort of things call themselves that.

"I'm a ...... survivor." (fill in blank)

Because every day you have to celebrate that you didn't die. Instead of hiding under the blankets, you have to jump out of bed, beat your chest at the universe, and shout, "You thought you got me with cancer, but I'm stronger than that. What else you got? I'm ready!"

3/8/09

Although KD was a slug-a-bed this morning, he bounced back and was in full form again by the afternoon. I can tell he has energy when my face hurts from rolling my eyes at him too often. He's such a brat when he has energy. I almost want to dope his food with some of his anti-nausea medication, but that would make me a bad person. So I probably won't do that.

He's back to pacing up and down the hallway as a form of exercise. It drives the dogs insane. They were already irritated from having a bath, so by the time he got to pacing, they were all for my plan of drugging him. 

Oh and yes, I did suggest he take an actual walk through the neighborhood instead of wear out my tile floor. Do you know what he said? "But people will look at me."

Really. This is a guy who often gets on stage willingly and plays music loud enough to get the cops called on the party. And he's afraid of people in our neighborhood looking at him. The most annoying part of this is that I am absolutely not surprised by his attitude. Yes, my friends. You think he is some kind of rebel metal-head rock star. But the truth is not so glamorous. 

I won't waste your time with babbling tonight because the time changed and we're all going to be screwed up for at least a week. I can't tell if I'm supposed to go to bed early or late so that I don't feel like death-warmed-up in the morning when I crawl into the dawn light to jog. Urgh ... why do we do the things we do?

3/7/09

KD is going to be exhausted tomorrow. A friend stopped by for almost four hours today, so KD skipped the nap he badly needed. Then he absolutely had to go to a party this evening (happy 40th Sean!). All of the activity would have been normal before, but these days he gets so tired, so quickly. He actually told me when he was ready to leave the party (well before 11PM) instead of me being the one nagging him from 1AM to 2:30AM about "please I'm tired, can we go?"

It's an adjustment for him, especially on the days he feels relatively normal. It's an effort to watch everything he does and not push himself like he used to. No, can't party all night. No, can't eat acidic or spicy food. No, can't drive sometimes. No, don't avoid that nap if you feel tired. Learning how to take care of yourself and listen to your body is a normal part of growing up (and growing ... well okay, middle-aged). But instead of learning to slow down over a decade, it was like he had to jam on the brakes really fast and come to a screeching halt in a matter of a few weeks. Who wants to be hit with 25 extra years practically overnight?

And to add to the misery, instead of drinking a few beers with the guys out on the back porch tonight, he spent most of the party sitting with us girls on the patio talking about child birth, housekeeping, and how much our husbands annoyed us. 

3/6/09

TGIF! At least it's never boring at the clinic visits. Something always happens to make it memorable. Today was supposed to be a shot and some labs. Yeah, not that easy.

It all started when they decided to change the dressing on his PICC line site on his arm. This is the (urgh!) spot where the tube comes out of his arm and gets securely taped down. They use these clear latex patches to make the area as waterproof as possible and some tapes to keep it all secure. As if the things ever stick. Within 12 hours they're peeling up around the edges and collecting fur and lint.

Anyhow, they peeled him loose today (a few days early) and found his skin all red and swollen and ... yuck. That actually is what both the nurse and the doctor said. Yuck. Not a good sign, right? Well rather than risk an infection, since the other end of the tube is mere millimeters from his heart, they hooked him up to an IV of high-octane antibiotics. 

Yes, it gets more fun. He had a reaction to the antibiotics. Probably because his system is all out of wack already. He got all puffy and red and ... you know that pointy curvy bit on the center of your top lip? ... his lips swelled up there for no apparent reason other than to make him talk funny.

So of course they doped him up with benadryl. By the time I got him home he was a zombie. I made him eat something (he hadn't even had breakfast), but the whole time I kept having to check on him because he had a fork and was practically falling asleep into his plate. Can you imagine me having to take him to the ER to remove a fork? I would never hear the end of it from his nurses for arming him with a pointed object in that state!

They also gave him a prescription for super crazy antibiotic pills. I am not making this up... the 14 day prescription would have cost $2,500 without our insurance's help. I kid you not. A total of 28 pills. In case you can't do the math in your head, that's about $90 per pill. I assumed they were made from illegal but fragrant and toxic plants on the highly endangered species list protected by a treaty signed by 194 of the major developed nations in the world. I had to look closely in case they each bore the signature of the master craftsman that hand assembled it over a period of three days in a Swiss watch-making studio ... but alas .. no tiny scrawl of Lars, Pedar or Claude were to be seen on the tiny pills. They were just freaking expensive.

He is currently exhausted and still zombified. I hope to at least get him rolling for a half-hour Saturday to go help celebrate (i.e. openly mock) a friend's big birthday. It is one of those big birthdays that end in '0' so there is bound to be drunkenness and over-eating happening. I won't try the guy birthday joke here (mostly because it's one that requires gestures), because I think my mom is reading this and she doesn't need any encouragement ... Mom! You know what I'm talking about!

3/5/09

I don't know how someone who has to visit the hospital this often can get addicted to watching Scrubs. He's been non-stop for days and days now. Oh, no .. I take that back ... just got back from getting my tea and he's run out of Scrubs and is now doing The Office marathon. Eeek! He must be missing work :-)

The Great Hiccup Episode finally ended after a 36-hour stretch of constant hiccuping. Needless to say he's got sore muscles from that. He's also shell shocked. Any time I even say the word, he gets a little panicky. 

Today was a non-eating day. I had to convince him food was a good idea. Not that he was icky-belly or anything. He just wasn't getting signals from his body to seek and absorb food. 

This also a sleepy day. He woke up late, spent the day in a daze, and is about to stumble off to bed finally soon. It's funny. I can tell sleepy from grumpy because of his hat. Actually quite a bit of his emotions are revealed in how he's wearing his hat. 

Sometimes he pulls it way down tight as far as the edge will go and I know he's not feeling well. If it gets pulled even further down to cover his actual neck, he's really not doing good and he's cranky. Or he pulls it all the way tight, then folds the edge way up which usually means he's alert and ready for trouble. If it's just kind of sitting there and all bunched up on the top like a Smurf, I can tell he's tired and wants to be left alone. The secret language of knit caps, eh?

One more day of shots tomorrow (and labs/blood). Then he gets a three-day weekend before doing all of this again. We've got to make an appointment with the radiology department next so they can check him out and set him up for radiation therapy appointments that start next month. I am imagining a doctor in a lab coat with a giant set of calipers measuring his head ... not at all like Frankenstein of course :-)

3/4/09

Synchronous diaphragmatic flutter.

In English, that's a hiccup. 

I woke up this morning to the sounds of KD trying to be quiet while hiccuping. It was a cross between a surprised pig and the vacuous giggling of a sorority sister. And it did not STOP!

Poor KD has been hiccuping on and off all day. I dropped him off for his shot and was glad for the silence. (Of course, I was promptly hassled by the campus cops for "following too closely" .. but come on.. at 20 mps, what could happen? Anyway...) Fortunately his mom was able to pick him up after and drop him home. And more fortunately, I stayed at the office until the evening. Not to be mean, but I really want to sneak up and break something just to scare him into stopping. It's hugely annoying.

Oddly enough he does stop hiccuping when playing his guitar or watching TV. But the second that TV gets clicked off, up comes that first hiccup. 

To add insult to suffering, the clinic nurses said it might be indigestion from what he's been eating. Which is only what I've been cooking. I'm not about to claim excessive skills in the kitchen. But after fourteen years of eating my cooking, if it was that bad ... well ... okay he's been diagnosed with diabetes ... and leukemia. So maybe it is my cooking that's driving him over the edge. Who'da thunkit?

In case anyone missed yesterday's post and is too lazy to scroll down for the full explanation, KD's bone marrow biopsy came back with zero percent cancer saturation. Which means all of this chemo is doing its job. His bone marrow is now fresh and clean and ready for action. They are next going to focus on the spinal fluid since the highest risk of relapse in his type of leukemia comes from undetected cells lurking there. That's the space around the spinal column and brain with all kinds of little nooks and crannies to hide in. 

Anywho, the house is quiet for the moment because KD went off to see some of the boys from the band. I hope the hiccups are gone soon or I may have to soundproof his room and lock him in there. No! Of course I wouldn't do that! Hee hee hee

3/3/09

The good news and the bad news...

The good news is that KD's bone marrow biopsy results came back and were really good. Last month the test showed a 2% cancer cell saturation. This time it came back at 0% saturation. As in--no significant detectable cancer cells in his bone marrow!

Before you whoop it up, the bad news is that this is not over. People often have relapses, and it is often because there were cells hiding in the tricky areas around the spine and brain in the spinal fluid. Which is why they do a lot of spinal taps (lumbar punctures). The idea is to keep stomping to see what else comes out from hiding. Like cockroaches hiding under the 'fridge.

So this month is a chemo cycle similar to last month where they zap his bone marrow one last time to make sure they've gotten everything. Then starting in early April is another cycle of chemo lasting 12 weeks that focuses on the spine and head to shake the last possible cancer cells loose. 

That's the cycle where he actually gets radiation therapy right to his head. He's hoping that he develops an enlarged brain like something out of Star Trek, and possibly powers that go beyond simple spoon bending. With luck he'll be able to play his guitar with his mind power alone. Heck, if he gets good, he could play his guitar AND his bass with his brain waves, and finally be able to learn the drums just so he can start a real one-man band. That would be spooky. Opeth eat your heart out. Can you imagine the marketing on this? 

Well, before he gets to the spoon-bending phase, he still has a pretty rough month of chemo for March. This week and next he's got daily appointments. Today he had a lumbar puncture, an IV chemo drip, a regular chemo shot, and pills. The Ativan they gave him for the lumbar puncture is still making him walk like a drunken monkey. He's eating well though, which is great because he's technically supposed to be really really nauseous right now. I say 'eating well' with a slight hint of sarcasm because he's eating everything I put in front of him plus whatever he can scrounge in the kitchen when he thinks I'm not looking.

Aside from the lack of barfing, he's responding exactly right to the chemo. In fact he's one of the few patients ever to respond like this. Classic text book stuff. He's perfectly on schedule and his cancer is disappearing like it's supposed to. Apparently this is very rare to be doing so well. I think he's really itching to get back to work, is what it is :-)

3/2/09

Oh Monday,

How do I hate thee? Let me count the ways....

Yes, I hate Mondays. No, let me clarify that. I have this evil vortex of bad juju that spills down across my life and anything I touch on Mondays. I don't know why. My usual plan is to keep my head low, duck and weave, and hopefully make it to Tuesday without too much mayhem and carnage. I don't dwell on the whys and wherefores.

Against my better judgement I accompanied KD to the hospital today because... well I'm on pins and needles waiting to find out about his blood tests and bone marrow test. No results on that. His blood test showed his white cell count was slightly back up so he's at least off the neutropenic diet and back to normal food. But the bone marrow test will be back first thing Tuesday. He's due to start the next chemo cycle Tuesday but they don't want to do that until the bone marrow biopsy is back in.

Good gravy. Well we still had to sit around because he needed that second unit of blood. I guess the hospital has worked out where mistakes have happened and have all this protocol in place to stop it from happening again. So when they're about to give blood, there are two nurses there going through steps like a couple of British navy men doing cannon drill. (If you've been out to the fort in St. Augustine and watched them set off the cannons, you kow what I mean. Except there wasn't a loud bag after of course. Duh!)

It was packed at Shands today because of Monday. In the waiting room was a young-ish guy and his girlfriend looking like it was their first day as out-patients. KD thinks the guy was across the hall from him in the in-patient ward. I'm sure we looked that nervous and reality-challenged our first day in again after KD's release too. They say he was discharged but that sounds too much like puss or phlegm so I don't call it that. Eeeew, why did I have to say that?

Most patients go to the "infusion room" for treatment. It's a big room with reclining chairs around it, each with a curtain divider which no one ever closes. So you basically get to see everyone getting blood or an IV drip or chemo or whatever. They have this big thing that looks like a fridge but it's actually a blanket warmer. KD likes those. A toasty blanket puts him right to sleep :-)

Anyway, in the infusion room, it's a little like AA or group therapy because you talk to the other patients and their families because it's dull watching an IV drip for hours. So when a regular has a problem or a setback it's kind of depressing to everyone else. 

There's this one big guy who looks like he was a football player in his distant past. They discovered he had an irregular heartbeat today and had the ER come up and get him. We all sat there for a half hour while they were arranging his departure. For a half hour we all sat listening to his heart monitor and the not-quite-regular beat of his ticker. Everyone was listening. We couldn't NOT listen. Everyone felt it. The bump-bump-BUMP-wait-for-it-bump that was the man's heart .. his actual heart... not functioning right. I mean .. his heart! Can you imagine that? You only have one of those, and if it stops working right, you're out of luck.

He was doing his best to look calm so his wife would stop pretending (badly) to be calm. But you could feel it much louder than the heart monitor. Everyone felt it. Not just for the guy with the heart beat broadcast around the room. And not just for the wife in her sweater set and slacks, clutching her purse. And no, each person wasn't worried just for their own hearts either. I'm not lying. You could feel it in the room. Each person was worried about everyone else in the room. Even after that guy and his wife took the trip to the ER and someone else was in his seat. You could feel it. This is the good stuff. This was real love for fellow man.

So before I get even soppier, I'll stop with the original poem by Elizabeth Barrett Browning. I still hate Mondays, but this is the real stuff that people feel about each other when they forget to be petty and self-involved.

How do I love thee? Let me count the ways. 

I love thee to the depth and breadth and height

My soul can reach, when feeling out of sight

For the ends of Being and ideal Grace.

I love thee to the level of everyday's

Most quiet need, by sun and candlelight. 

I love thee freely, as men strive for Right; 

I love thee purely, as they turn from Praise. 

I love thee with the passion put to use

In my old griefs, and with my childhood's faith.

I love thee with a love I seemed to lose

With my lost saints, I love thee with the breath,

Smiles, tears, of all my life! and, if God choose, 

I shall but love thee better after death.

3/1/09

Wow, did I not post anything yesterday? Could that be because I actually have a life beyond KD and work? Not possible! (Okay so I got home way after the witching hour when my carriage turned back into a pumpkin, and was not in the mood to type ... and no I was not drunk whatever the tabloids say!)

Saturday and Sunday were typically busy for me and dull for KD. Since his immune system has been almost zero, I have to really keep up on the housekeeping. Lots of laundry, which was hard to do in the windy weather these last few days. I thought some of the sheets were going to end up on a neighbor's roof. 

And being back on his neutropenic deit (this is the one restricting him from fresh fruits and veggies, etc), he's been sulking and grumpy. "Well, what CAN I eat?" is a common pouty question I get from him. So I'm back to cooking more of his meals again. Never mind he just had a gorgeous meal of pasta with spinach, and cheesecake and ice cream for dessert. He still acts like it's bread and water rations.

He did get out this afternoon and visit Joey where he was indoctrinated into the cult of Guitar Hero .. or was it Rock Band? His leg is sore from playing the "drum" haha ... so all of you real drummers out there, feel free to mock him for that. Trust me, he likes it :-)

Tomorrow (Monday) is probably an all-day trip to Shands. It's the start of the new chemo cycle, and we'll hopefully have a few more answers about that sudden drop in his immune system. The results of the bone marrow biopsy will take until later in the week. I suspect they'll schedule a lumbar puncture though regardless since he's due for one. At any rate, it'll be nice to have a rough sketch of what this month will look like for treatment.

Anyway, let's call it a night, okay? I have coffee flavored ice cream in the freezer and a box of Girl Scout cookie calling me. Don't get me wrong. I like y'all. But I LOVE ice cream and Girl Scout cookies. There's just no competition :-)  Mwah!