happy.sad.mad

7/7/09

2009-07-07T18:52:00.000-07:00

Long time, I know. Funny how life catches up when you stop paying attention to it.

Well it's been a big week for KD so far and it's only Tuesday.

He started back at work on Monday. Yep, he was a bit nervous. It's been six months. He wasn't sure what to expect. To start off with, his digital time card rejected him. Not a good sign, right?

It was interesting how many people didn't recognize him without his signature long black hair. He does look totally different. To be fair he was also NOT wearing a black t-shirt. He had a checked cotton button-down shirt instead. Jeans, and brown shoes even. Not bit of black on him at all. I know right? Must be the medication!

The other big deal was today at the clinic, they actually took out his PICC line. This is the tube that went up through his arm and ended in a major artery near his heart. Ideal for taking blood, giving injections, and having chemo drips. Well, that sucker is gone :-)

There's a two week down time before he goes in to see Dr. May, the original admitting doctor who's been overseeing KD's progress from a distance. By then they will know from his blood counts how well his body is bouncing back. If it's spectacular, he may go right into maintenance. If it needs a little help, they'll have him finish the last month of this chemo cycle.

But the long and short of it is that KDs a squeak away from being officially in maintenance, which is like a half-way house for cancer. If he goes another 18 months on maintenance without a hint of relapse, then he's officially cured (more or less).

Now he's looking for books and blogs on life after cancer. But there seems to be only two attitudes out there. The 'survivors' who are always clinging to their cancer as something that defines who they are, and the silent who want nothing more than to move on and forget they ever had it.

Can't there be a middle ground? A balance? It seems to me that getting through cancer has a lot to do with having a balance throughout. Some serious, but some silly. Some acceptance of the shortness of life, but more determination not to go gracefully. The ability to embrace the experience as inevitable, but also the strength to not get pulled down under it.

Sure, there were bad days and scary times to wait for news and moments when even good news was crappy. But overall KD survived cancer, and survived chemo, because he was able to keep his balance. With grace, strength, and and an irreverent humor about the whole process.

A few more updates as we clear these last few hurdles, and then I may have to hang up this blog. It will be nice to not need this anymore. :-)

6/1/09

2009-06-01T20:33:00.000-07:00

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

2009-05-19T06:36:00.000-07:00

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

2009-05-11T19:21:00.000-07:00

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

2009-04-28T16:00:00.000-07:00

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

2009-04-27T20:53:00.000-07:00

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

2009-04-22T19:57:00.001-07:00

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

2009-04-18T15:49:00.000-07:00

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 :-)

4/16/09

2009-04-16T20:18:00.000-07:00

Yesterday was KD's latest lumbar puncture. Yes, that's a friendly way of saying 'spinal tap'. Yuck! I still can't think about it.

Fortunately they dope him up before hand, so not only is he relaxed, but his short term memory is trashed. They must have given him a bit extra because he was still quite buzzed by the evening. Needless to say he slept the rest of the day, and is sore and tired today.

Except for a few more lumbar punctures, he's pretty much cruising through the rest of this treatment cycle. Just pills and a few IV drips. He's doing amazingly well. It's a few months away, but crossing into 'maintenance' seems like a short jump away. Scarily so. It's almost hard to believe. Or hope for.

There's a girl in the clinic that comes in the same days he does, about the same age, and she's relapsed. It's tough to see the older patients there not doing so good, but to see a peer having a relapse is especially depressing to him. It's hard to think that getting better and then getting worse is so unpredictable and uncontrollable.

Even more critical is a family friend who has been fighting cancer for some time. She is in 'transition' which is where they stop chemo entirely because it's not helping. She's in hospice care now. Even though KD has been dealing with leukemia himself, he still doesn't know what to say to his friend and his family. Who decides which cancer patient recovers and which doesn't? Is survivor guilt a life-long issue now?

He keeps saying that he's living on borrowed time from here on out. Which is more true now than ever. As a newborn he had rheumatic fever and nearly died. Not to drag out the old cliche about life being too short, but hey... let's face it. Life IS too short. Having been with KD through this whole experience has brought that single fact home to me.

Sure, a lot of people believe in reincarnation. I do. But that doesn't mean life (this life) is any more disposable or any less important. On day one I realized the only way to get through to the other side was to open my embrace, close my eyes, and step forward into life. (Anyone who knows me, knows what a control freak I am and that this new philosophy is an aberration.) For every sudden loss of altitude, there was an equally brilliant moment of hope. And most important, these moments were happening whether I accepted them or not.

Surviving was about giving up control and taking the moments as they were. Because frankly (another cliche) that's all we've got. The horizon became a distant, unimportant, vast, and changing foreign country. We started looking instead at the nearest scenery. And the people around us. Life became richer. Life came alive.

Yes, I know. I'm running off at the keyboard here again. You come here to find out if KD's still alive and well, and you get me rambling about the other side. The spiritual, emotional, metaphysical sides of cancer. But with cancer fading into the background, becoming a part of our history, we're still shell-shocked and processing what the hell has just happened.

4/13/09

2009-04-13T18:23:00.001-07:00

I know .. it's been ages since I've posted. Nothing terrible has happened. (Okay I had a mini insanity break and rejected all unnecessary responsibility briefly, but I'm back!)

KD is actually doing quite well. Today was his LAST radiation treatment (for the foreseeable future)... can I get a hip-hip-hooray!

It's pretty crazy getting radiation zapped right at the old brain box, but everything went well so far. They say he can develop side effects for months and months, but we'll deal with that if it happens. They also said all of his hair would fall out and that's just not happened. His scalp is quite itchy but that's about it. He had a headache today and has been a bit tired. Other than that it seemed pretty routine and dull.

I told you that when he went in the first time they made this mask customized to his face to keep his head still? Well, since he was done radiation they let him bring it home. I am totally creeped out by it. I hope he doesn't plan on keeping it in the house. Or if he does, I may insist on locking it in a box in the closet. It looks like something out of a discount horror film.

Of course the week doesn't end for him here. He's got to schlep all the way to Jacksonville Tuesday to renew his green card. (That's a tangent I'm just NOT going on here, but let's just say it totally sucks.) And Wednesday he goes back to the clinic for another lumbar puncture.

Now that I'm back to being responsible, I'll try to keep up with important posts again. No promises though :-)

4/7/09

2009-04-07T20:40:00.000-07:00

Just a quick update since I'm tired and KD is already in bed (and it's flipping cold for no damn reason!).

KD has his famous tour of the Shands cancer facilities today. We almost didn't get there because there was some crazy accident in front of the University that involved someone lying on the street (super bad looking), and you know traffic around campus at that time of day is already a disaster.

Anyhow, I dropped him off for his labs and to see who got to poke, prod, or zap him first. The clinic had him already so they got dibs. He had his lumbar puncture in the late morning. I met him at the Cancer Pavilion down the street (sounds festive, right .. pavilion?) after lunch for the radiation. He was still stoned out of his mind from the Ativan from the LP. So of course the radio-therapy (another festive sounding phrase) went just fine.

When we got home I had to literally scrape him out of the car with a giant spatula though. He was totally worn out. He slept the better part of the day, with the cat curled up under the blankets with him of course. And then he spent the evening sitting in his chair like a zombie (cat in his lap now). He did manage to eat a little bit, an improvement over last time he had all of this stuff on one day. But that was an up-hill struggle on my part. I almost had to do the whole airplane-with-the-spoon bit you do for a kid. Thanks for the soup Mo! Just what he needed.

Now it's just radiation every day for the rest of the week until Friday. He goes to the clinic and they'll probably want to give him more blood and put him back on his neutropenic diet. We're used to the roller coaster by now. More info when something 'interesting' happens. As if every day isn't full of 'interesting' stuff already :-)

4/6/09

2009-04-06T20:13:00.000-07:00

Today was just radiation (yes, 'just' radiation, how bizarre is that?). Tuesday is a full radiation and lumbar puncture day, with a side of blood/labs and probably more pills or IV depending on the results. How desensitized have we become? I'll tell you.

Apparently KD's found some supportive forums and blogs to read up on this process. And he's discovered that once chemo is done and people go onto the maintenance cycle, they actually become depressed. Often to the point that they need anti-depressant meds. Really. How terrible is that? We're so busy healing the body that we forget to heal the mind?

I know, let's just get through the radiation part first, and cross that bridge when we get to it. So radiation therapy... yep, KD's been going for a week now. He's definitely tired. And his belly has been rebelling a bit. Not classic nausea. Just lack of appetite, general tummy aches, and of course rampant burping (which is a good thing).

The schedule calls for daily radiation the rest of this week and Monday of next, finalizing with another super fun and exciting lumbar puncture. They give these things out like party favors at this part of the treatment cycle. He should be pretty worn out and rolled thin by the time this is over. Fortunately the schedule lightens up a bit except for some pills and a few more of those crazy lumbar punctures.

And no, he's not loosing the last of his hair yet. We're waiting and looking and checking but the fuzz is still there. What's left of it, at any rate. And with this cold spell coming on, he's going to be back in hats again. I think he's come to terms with the hat thing finally. Now that he's got a lovely selection of stylish and trendy hats to choose from :-)

4/4/09

2009-04-04T18:20:00.000-07:00

Yes I've been a slacker about blogging lately. This also the first year in ages that I'm doing my tax return in April. I'm the anal retentive type that normally mails that sucker off at the soonest possible second.

'Normal' being the operative word, I guess. Normal is not normal anymore. My computer's screen saver is photos from our lives (since I got my first digital camera), and it rotates through three years of family events, outings, birthdays, random dog and cat pictures, and those weird pictures you don't know why you took but don't want to delete in case you want to see them some day.

I came in to check my email earlier and a photo of KD was up on the screen. Probably from two years ago after swimming at the springs. KD was just sitting there, smiling off camera. And he had this thick black hair! It freaked me out. I was seriously like "WTF?" (yes, too much time online lately... starting to think in 'chat'). I'm not used to that stuff anymore. I'm used to his fuzzy head now. It's disorienting.

Normal has definitely changed around here, yes. There was actually a two day gap between chemo cycles where KD was off every single pill. He had a hard time getting up in the morning, having breakfast, and NOT TAKING PILLS! OMG!

So far the radiation treatments have been simple and straightforward (a little creepy because of the weird machine). But KD has definitely felt the side effects. He's increasingly tired. And his tummy is totally upset. Not classic nausea. Just upset. And not at all hungry. Which for him is totally bizarre.

Next week is daily radiation again, and on Tuesday another lumbar puncture on top of that. It's incredibly awkward that he's also got to drive all the flipping way to Jacksonville to renew his green card on the same day he's scheduled for a lumbar puncture. Talk about having to weigh the priorities. (Yes, we can juggle the schedule, but you know how hard it is to add something more when you're juggling too much already.)

KD was bored enough to venture out into the real world Friday though. He went to lunch with friends from work before his radiation appointment. It was nice for him to hang out with normal people (not TOO normal of course). It seems like there is a real life to return to after this circus has packed up and left town. There is life after cancer.

4/1/09

2009-04-01T21:01:00.000-07:00

Yesterday KD got quite an icky tummy from the radiation or the lumbar puncture or the Ativan. He said he didn't remembering eating as much as came back up. Yuck, yes... throw-up humor doesn't quite work.

Anyhow, he was bright and chipper this morning and ate a good breakfast before heading off for radiation appointment number two. The rain made the day even more depressing and ominous. I was almost expecting to see Dr. Frankenstein on top of the Cancer Center, waving a long metal rod and laughing up at the lightening.

When KD woke up from his long afternoon nap afterwards, he looked a little like the Swamp Thing. The area below his ears, behind his jaw, was totally swollen up. As if he was going to grow gills while we watched. Very strange. The swelling has gone down a bit since, but it's still weird. Hopefully the doctors don't just say it's interesting tomorrow and send him on his way.

Although he's supposed to loose what's left of his hair from this, he should keep his eyebrows at least. Don't ask me why. It makes no sense. And his goatee which was growing in fluffy and thicker (I mean now it's about 42 hairs instead of the original 16), should also hang around.

Let's hope the gills don't develop overnight. Or any other body part. But a super power might be nice. X-ray vision? Levitation? The ability to fill out an IRS income tax return in five minutes? Fingers crossed!

3/31/09

2009-03-31T16:14:00.000-07:00

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

2009-03-29T20:09:00.000-07:00

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

2009-03-28T18:12:00.000-07:00

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

2009-03-27T18:39:00.000-07:00

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

2009-03-25T19:13:00.000-07:00

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

2009-03-24T17:46:00.000-07:00

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

2009-03-23T16:30:00.000-07:00

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

2009-03-22T18:55:00.001-07:00

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

2009-03-20T17:47:00.000-07:00

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

2009-03-18T18:47:00.000-07:00

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

2009-03-17T18:36:00.000-07:00

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 :-)