4/18/09

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

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

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

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

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

4/16/09

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

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

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

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

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

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!