1/31/09

Yay! Another boring day. We like boring days around here because there's been far too much excitement lately.

KD has been getting exercise since he spent a month laying down and has no muscles left. That's a lot of pacing up and down the hall or doing circuits around the back yard. This confuses the dogs to no end. And the cat is pissed because she's used to him sitting still so she can lay on him.

I think the biggest excitement of the day was that he started on a different medication. He's off Levaquin which is a strong, general antibiotic. Now he's on one that mostly targets pneumonia and similar bugs. We've got a chart and a box of bottles and it's sometimes hard to keep track of what pills he should take at any given time. I think they're pretty ... some cobalt blue, some pink, some shiny black ... but then, I'm not the one having to swallow them all. He practically rattles like a maraca. 

Hm... not to get off topic but I adore Wikipedia and had to look up maracas. I don't know if it counts as synchronicity, but apparently Bo Diddley is famous for having a maraca player in his band. Local celebrity and guitar player. Maracas. Okay okay .. back to topic. Sorry about that :-)

I know you've all seen pictures of KD without his legendary hair. It's pretty much gone. He looks like a kiwi fruit. And even that is starting to fall out. 

The other famous side effect of chemo is thankfully absent. He's not been nauseous very much at all. I can hear him mooching around in the kitchen right now in fact. I ran to the store earlier for provisions and he requested a whole cheesecake. So I think his tummy is fine. 

It's hard to imagine that exactly a month ago today we were in Dr. Stechmiller's office after the bone marrow biopsy and we still hadn't heard the word 'cancer'. We were listening to the nurses in the hall talking about getting out of work early so they could get on with their New Year's Eve plans. It feels like a thousand years ago to me. 

1/30/09

Today the house was ghostly quiet, interrupted only by the random and sedated sounds of KD snoring. He was up and around long enough to eat breakfast, then back to bed. I could only inspire him to get up for dinner by making a pizza (I don't mean I made a real pizza... I am not that adventurous.. I mean I put a frozen pizza in the oven).

Apparently the chemo he had on Tuesday kicked in with a few symptoms today including sleepiness, dizziness, and a tingling sensation in the fingertips. After reading the other symptoms he could have also been suffering, these aren't so bad. Some of the warnings read like scenes from a horror novel, just shy of projectile vomiting and speaking in tongues. So a little sleep and tinglies aren't so bad.

We are slowly plowing through the pile of DVDs we've been lent. And there is a stack of books and magazines next to his bed that is developing its own gravitational field. And then there's the laptop plugging him into the entire internet. So he's got tons to do. Unfortunately he can't stay awake to do it all.

I've left him dozing in his chair with a mug of hot cocoa and the newest issue of National Geographic (with an awesome, gruesome article about Sicilian mummies). Hopefully he feels better tomorrow.

1/29/09

Some days the boy is not hungry, and some days the boy is HUNGRY! Today was an eat-everything-in-sight day. Especially bananas, although I promise I am not making any connection between his bald head and a monkey. That is all an assumption on your part :-)

It seems like the problem with the extended leave disability payment was something KD got his wires crossed on. The Family Medical Leave Act covers one range of legal requirements, and the disability payment insurance offered by Invivo covers a different range of time. So I think it's going to get sorted out somehow. Like I told him, only worry about the big ass problems. This other stuff will work itself out.

And the other good news is that with many false starts, we've finally got him a laptop that works. I'm sure if he hasn't been bothering you by email or on MySpace/Facebook, you'll soon see him out in cyberspace proving to everyone that he's still alive and kicking.

God! And is he kicking. He must be feeling better because on no fewer than three occasions today I had to hold back from slapping him. He's back to his old ornery, cantankerous self. You should have heard how much he complained when I gave him a red paper bag for his lunch at the hospital today. You would think I asked him to wear a black leotard (a la Justin Timberlake/SNL, eeew). 

Anyhow, I've got him home now until Monday when he goes in for another bone marrow biopsy. And the rumor is that on Tuesday they're starting the next cycle of chemo. So next week he'll be not feeling so well again. At least he gets to watch the Super Bowl in some semi-normal state, albeit without his magical, infamous hair on. :-)

He's back emailing so if you want to get him directly, he's at kdism2@yahoo.com or of course Facebook and MySpace. Please someone call and entertain him! He's going to drive me nutty!

1/28/09

Well, not much to report today. Which is a great thing :-)

He's started taking pills to get him more phosphate. Seems like they make him tired and groggy for a while afterward. Either that or he ate a big lunch and needed to sleep it off, not unlike a boa constrictor digesting. The nurses did say that he was also to drink chocolate milk to get his phosphate, so that's probably the best prescription he's gotten so far.

Between the patches of weird weather today, he got out in the sun and walked about a bit. He was actually sore today from all of the walking around yesterday. He's just go no muscles left at all. It seems mean, but I'm trying to drag him out to walk a bit so he can get some exercise.

Tomorrow is another day of out-patient stuff, which means drawing blood for labs and then waiting to see if they want to give him anything for whatever his blood is lacking. After the bone marrow biopsy on Monday, they'll be starting another cycle of chemo. This means another drop in his blood strength, and probably a dip in his immune system again. With any luck, the results from the biopsy will come in quickly and show that the cancer cells are all dying off or dead. 

In the mean time, it's a struggle to keep his spirits up. He tends to brood when he's got nothing interesting to occupy his time. And he's been brooding (and sulking a little) for a few days now. Not that he doesn't have the right to do that. But he tends to get himself worked up over little things he can't control instead of the BIG ASS BASTARD THINGS that deserve to get worried over.

1/27/09

Another grueling day of "out-patient" treatment. Mostly all day in the clinic again for chemo and more phosphate. And we had the bad luck to leave at 5:00 again which is just torturous. To be anywhere in the general vicinity at rush hour is aggravating. And to be there tired and hungry from the hospital was worse (and i had spent all day on dental work, so neither of us were cheerful chipmunks).

He's due to go back Thursday for more labs (they test his blood), and then on Monday is the dreaded day ... another bone marrow biopsy. Of all of the stuff they've done to him so far, this was his least favorite, so he's really dreading another one. The first one where they discovered the cancer was probably just as terrible. But he was so sick then, that he didn't have the energy to resist the process. Now that he's got some of his fight back, he's not feeling so complacent about it.

But the point is to look inside the bones and see if they're doing what they're supposed to be doing and if the cancer is leaving. So as much as this sucks, he's going to be a big boy and get this horrible procedure over. Hopefully the Super Bowl will get his mind off of it for a few hours :-)

1/26/09

KD had his first official out-patient treatment today which means he went in to the hospital for only *most* of the day. Same song and dance. Same poking and prodding. Hooked up to the same IV pumps through his PICC line. But just a different part of the BMTU floor.

The magic number, called the AGC, which pretty much measures how strong his immune system is, was up around 1400 today. It has to be above 500 for him to eat fresh fruits and veggies (yay, he can eat real food again!). It had been down to absolute 0 only four days ago. So that means his body is bouncing back like a super ball.

It may sound bad that his phosphate levels were low, but in him this is a good sign. Phosphates are used to make white blood cells, and because he's low, it means his body is working like crazy to make a whole mess of burly white blood cells that will protect him from invading hoards of bacteria. 

He got an IV drip for that and got to watch some horrible daytime cable programming. Then he got to experience the crunch of getting out of the parking garage near rush hour which takes a long long time. A note from Auntie Radha, gentle readers ... just don't try to get out of Shands and head up 13th St at rush hour even if you have to. It doesn't happen. You may as well walk. Even if you have cancer.

Oh and the only other thing worth mentioning is that KD is eating enough for ten normal people. And burping for twenty (heehee, don't tell him I said that). He's still weak and cranky. And the bristle of his buzzed hair is falling out. And apparently he's actually 6 months shy of having his full ten-year employment record at Invivo/Phillips so they may cut his disability period much shorter. But this is how we roll. One day at a time. One crisis at a time. And we survive. 

And we still make cancer-patient jokes because you can either laugh or cry about it.

1/25/09

The highlight of KD's day was a trip with me to CVS for supplies. That's how exciting this is for him. But it's out of the hospital and people aren't drawing blood or measuring his "output" anymore so that's good.

He's been sleeping a lot, and eating fairly good meals. He even had a late lunch outside in the weak sunlight and the fresh air. Mo brought some excellent coffee since it's recommended to help settle the effects of the lumbar puncture. He's still having pressure and headaches, and periodically has muffled hearing issues.

We're going to his first out-patient appointment on Monday morning. I hope we get more of an idea about his treatment schedule then. The day we checked out, the doctor showed us the general time frame for his treatment cycles and it was kind of comforting that this was printed in a real book that she carries with her, and that the book is really old and scuffed. As if this is nothing new and they have the whole process down and set and proven successful. 

Actually I hear him mooching around in the kitchen now. I'd better go see what he's up to before he breaks anything else or gets into trouble. You know what he's like when he's bored. 

1/24/09

It was KD's first full day home and he managed to only get into a little trouble. Besides breaking a few things, and almost breaking himself once, he made it through in good shape. What else can you say when your life is measured by the gaps between meals and pills, the the major highlight of the day is taking a shower? 

He's still eating like a horse, but he's trying to keep it under control since his body's not quite able to signal properly about being hungry or full. And he'd like to get his blood sugar levels back down for the diabetes. Other than that, he's looking forward to Monday's clinic visit where they might lift his dietary restrictions and let him eat fresh fruit and veggies again. He's been dreaming about fresh papaya. Yummy!

Now I realise it's Florida, but it is also still January. Is it too much to expect to be able to go shopping and actually find a warm hat to buy? Apparently we're supposed to be buying sunblock and beachwear now, but I doubt KD will want to wear a bikini wrapped around his bald head to keep warm. He's self-conscious enough appearing in public with a mask on. I did manage to find one hat and paid way too much money for it because I was desperate, so if anyone sees simple knit hats for sale anywhere, please let me know :-)

If you want to give him a call, you can still get his cell phone any time (except during naps which happened randomly) 352-871-6263. Or the house line 352-264-9662. He's not quite up to sitting at the computer here, and it'll be Monday before we get him the laptop. But eventually he'll be online again. If you don't have his email address yet, he's at kdism2@yahoo.com, or you can find him on Facebook or MySpace too.

1/23/09

Talk about controlled chaos! Today was an insane rush of last minute cleaning, schlepping, and running around. I got the word at 9:30 that there were going to actually release KD today at 1:00. Yikes! I thought I had another week to get the house ready, but no... so i called in the Mom Calvary and they came over to Mom-bomb the place while I went to spring the guy from his medical prison. 

Yesterday when they said they were thinking about letting him out early, I only half-believed them. You know how hospitals are. They can go for days *thinking* about it. But nope ... I showed up and they were getting ready to kick him out of the nest. Can I tell you how much stuff I had to drag out of the hospital and load up into the car? Well it was a lot. In the end, I even had to make him carry his own guitar because sadly I still only have two arms.

As we made the long march down the BMTU hallway, we were expecting to be tackled by a nurse or two before we made it to the big double doors. Surely this was a mistake! But as we rounded the bend and nervously crossed the threshold past the nurses station, they made an announcement over the PA... "Attention, Krishna McClellan is being discharged."  A wonderful round of applause from the nurses and others loitering in the halls ... and then we were free!

Well, not so fast. Yes, we have to go back. But this is the first milestone and one of the most significant. KD's blood-work showed he is rebounding at a meteoric rate. Much better than average. He still is. That's not to say he's better. He still gets out of breath from walking around the house. He still is very tired and weak. And his white blood cell count is still so low he has to wear a mask in any public place. He's still on all kinds of pills, and a restricted diet. He can have visitors here at home, but no one who is sick or has been recently exposed to things like chickenpox. Yada yada. So there are still rules :-P

We go back Monday for the first day of out-patient treatment. The schedule is a series of chemo cycles that last for a total of seven months. And then two years of maintenance and checking to be sure it's gone for real.

If you'd like to visit, let us know. (We're up on the northeast side of town near Satchels and Bishop Middle School.) KD got his cell phone (352-871-6263), or you can get the house line at 352-264-9662. When he feels up to it, he'll be getting online again. He would like to say thanks for all of the support, and I'll add a big sloppy wet kiss to that ... *mwah*!

1/22/09

Okay folks ... I think this is the part where we all have to hope and pray in unison. KD is doing so well, they're talking about letting him out early. Like tomorrow (Friday). No really ... Friday, the 23rd. I swear. That's the rumor. 

We won't hear until the last minute of course. His white blood cell count is still pretty low. But they feel he's doing so well that he can actually come home and do the rest of the treatment as out-patient care. How cool is that?

In the mean time, he was flooded with visits from friends from work today. So many people wanted to sign the get-well card that they had to get three cards to fit everyones good wishes. And they took up a collection which was a wonderfully generous (and practical) gesture. Many many thanks to everyone. 

When I left him tonight he was just staring up at his wall covered in cards and pictures, and he had this misty, sweet look on his face that had nothing to do with the medication and everything to do with his heart being lit up like Las Vegas in his chest. 

If all goes well and the doctors and nurses agree, KD may be home with me by this time tomorrow. If not, it may be Saturday or Monday. But regardless, now more than ever it's a good idea to call ahead before going for a visit, in case he's just not at Shands anymore. He's not out of the woods yet of course. There's still weeks of treatments and watching and waiting and testing to see if things keep going the way they're supposed to. But maybe being out of the hospital will make the rest of this process a lot easier to handle.

As always, KD wants me to pass along thanks to everyone. With any luck he'll soon have a computer and be able to get in touch with the real world again. You'll probably each be hearing from him then during his long boring days stuck at home. 

1/21/09

The big news for today is that the test results from the lumbar puncture are in, and he's got beautiful spinal fluid. But we already knew that about him :-)

This means that the cancer cells did not spread from the blood to the spinal fluid, which is a known issue with this type of cancer. This means that extra stretch of chemo is not necessary, which means he's right on schedule.

The other big news is that the nurses finally talked him into buzzing his hair because he was shedding like crazy everywhere. Bzzzt! All gone! He's trilled though. He's been bugging me to do it to him since we checked him in, but I couldn't bring myself to take that final plunge. So yes, he looks like a Hare Krishna now. (I have a similar picture of him at 11-years-old like this but if he found out I posted it, he'd be mad, so I guess I won't.)

Also Kar and Radha stopped in and gave him the card and video from the Friends of KD hockey game they set up in Monday. (You can see the big card taped up behind KD above.) Lots of written and video'ed good wishes from friends and family ... very sweet. I think it's one of those things you rarely get while you're alive. People usually don't usually take the time like that until a funeral, and then it's too late. KD is in the rare position of getting a very pre-houmus eulogy.

Although his numbers and blood counts are all very low, it's all how it's supposed to be. His headaches from the lumbar puncture are still wicked, but getting slightly less so every day. His weight is down enough that the nutritionist is putting him on Ensure to hopefully jump-start him in the right direction. 

Other than that, we're just counting off the last few rounds of chemo and hoping he's ready by his departure date. It'll be here before you know it. Then four to six weeks of out-patient treatment, a few months of watching him bounce back, and they might actually declare him healthy again :-)

1/20/09

Well he's got a few more cycles of chemo .. he's on day 18 (i think) and there's 27 days in the full schedule... but they're already using terms like "release date" and "outpatient"! He's doing really well and they're all very optimistic about getting him launched from the BMTU soon. Like a happy little canoe :-)

He had an IV chemo and a sub-dermal chemo treatment today. Still having headaches from the lumbar puncture. And no sleep last night. So he's a bit out of sorts. When I left him tonight, he had an Ambien so maybe he'll get some sleep or something that resembles it.

I brought him one of his basses, and Kunti brought him lasagna, so he hit the jackpot today. Oh and he got pudding which makes him happy in the belly.

As far as I know, the out-patient treatment is still a busy and intense process too. It just means he's at home instead of in the hospital. He will not be at all ready to return to work yet, or even leave the house without a mask on. And from what I understand, they're going to want to do at least one more bone marrow biopsy to see if he's progressing well and the cancer isn't coming back on strong. He's not looking forward to that. 

Do I really want him home 24/7, bored out of his mind, and slowly getting his energy back? Yes, I want him to get better, but will I survive that part of it without sending him back to the hospital so I can get some rest?

1/19/09

KD's still having headaches and back and neck pains. Today he approached it from the no-pills, just-water-and-sleep angle to see if that helped. He seems less groggy but more cranky than yesterday. 

Thankfully no chemo today. Just fluid IV drip. And he's still eating a lot, so that's a good sign. No more nausea. But he is starting the shed his hair a bit more than usual. Don't go in there expecting a shiny cue-ball head, but it's going to get pretty thin :-)  I'm still rooting for a scalp tattoo while he has this opportunity, but he's not seeing it my way yet.

The boys dedicated the hockey game to KD today. One team was FOKD (friends of KD) and the other was Freekd (free KD) ... and quite a gang showed up. Thanks Kar for being the driving force behind that. More info on that soon. I stopped by briefly about an hour into the game and hung out with those too out-of-shape or afflicted-with-children to play. KD doesn't know the details yet, so let's keep it quiet until we find out if the video can be edited and sent over as a surprise! (Let me know about that guys.)

Drew liberated a laptop for him, but was thwarted by password protection, so maybe in the next few days KD will have a real link to the outside world! Yay!

Even though he gets tired walking to the communal kitchen to microwave his dinner, KD's still in good spirits and cheerful about everything. He's struggling to get good sleep, so if you call and he doesn't answer, he's probably trying to catch up. He's best in the afternoons. But please do call and say hi, even if you don't have much else to say.... 352-871-6263.

1/18/09

I suppose Valentine's Day is coming soon because I found the whole BMTU ward decorated with hearts today when I came in. (hint! hint! to all of you guys out there with significant others... don't say you weren't warned that you have less than a month to come up with something terribly cute or romantic)

Anyhow, Sunday seems to be the slow day in the hospital where everything is an hour behind. Breakfast usually arrives at the crack of seven-thirty (who can eat that early?), but poor KD had to wait on his hospital pancakes until after eight. It's good that he's this hungry again after yesterday's icky-belly.

Still having lots of headaches from the lumbar puncture (eeeeewwwww). And he gets out of breath and worn out from walking up the hall to get his lunch from the communal 'fridge. Although I have to say he's getting quite skilled at rolling his IV pole all over the place. He's hooked back up to that thing to get fluids for a while (and I suspect the nurses like knowing where he's at).

I don't remember if it's Monday or Tuesday, but in the next few days he's due for more chemo. Sill no hair loss, but he does have pretty funky bed-hair some days :-)

Phone calls are still awesome. And visits too. I've never seen someone so interested in news about the weather. He's jonsing for the smell of real air. Complete reality-withdrawal at this point. Any help you can be in keeping him sane is greatly appreciated. If he had more energy, I'm fairly certain he would have made an escape attempt by now. 

1/17/09

Today KD was feeling the after effects of the lumbar puncture. Taking spinal fluid puts that whole system out of balance, so he's been having headaches and localized head and neck pains. They've given him low doses of codeine and caffeine to target the pain, and it all goes away if he lied down flat. 

The only other news is that he's lost a bit of weight. He's down to 122 pounds, from 130 when he came in to the hospital two weeks ago. We've got to find some healthy fattening foods he can eat. Good old stick-to-your-ribs kind of cooking :-)

Everything else is going well. He's had more visitors and that's kept his spirits up. Now that his immune system is pretty much gone, they're getting strict about how many people can be in the room. No more than two visitors at a time, so plan ahead or face down some of these nurses when they give you *the look*.

Now he's asking for one of his basses. Apparently one guitar isn't enough music. I suspect it's because he can actually play it in this larger room. (If you don't know, a bass is slightly longer than a guitar, so space is an issue :-) I'm betting he'll ask for his mandolin next. The other patients might have a problem if he asks for his concertina next because there's no volume control on those things.

Although he's feeling okay now, this next week is when he's supposed to start feeling weak, sick, or just plain bad, so please please please call ahead if you want to visit to make sure he's up to it. I'll keep you posted on it if he starts feeling too bad for visitors. But generally afternoons are better than mornings. And please do call just to say 'hi'. He's lost all connection with reality and would appreciate an update on the weather and what day it is.

1/16/09

Today the first ickiness of chemo seems to be setting in for KD. He had another set of chemo and got a headache, so they gave him a low dose of some codeine-based pain killer. That did not go over well (if you hate that feeling too, you know what I mean). It made him a bit sick. On top of that, he's got some ear disturbance and can't hear so well, so he's a little out of sorts. So he's on sudafed for that.

They've also hooked him back up to an IV drip so he's back on a leash to his "pole". But he's enjoying the bigger room and the luxury of taking a shower whenever he wants (and having a bathroom door!). If you go see him, it's now room 4252... down the side hall at the very end.

Now that he's O.D.'ed on Indian food, he's switched to Italian ... or rather, and i quote ... "anything like that with tons of cheese on it" ... but nausea and Italian food don't go together so well, so I may hold off on the lasagna or pizza for now. How horrible would that be, to burn out on pizza because of chemo? Could you ever give up pizza? No way!

If you have a few minutes and want to tell him a joke or something, he could use a phone call or something to cheer him up. He's been talking to some old friends, which got him brooding about his wild (and stupid) teenage years. Getting cut off from the real world is making him a little squirrely now I think.

Google some jokes and give him a call... 871-6263. He's due to get sicker soon, so now's a good time to call or stop in to see him before he goes bald and gets crabby about it :-)

1/15/09

This is Day 10 of treatment for KD and he finally got the lumbar puncture they've been threatening for a while. He says it was painless (I'm an in agony every time he describes it though). The worst thing about it was the muscle relaxer they gave him before hand. He was still limp and dazed when I left there tonight. 

I still can't believe he asked to see the needle after they jabbed him with it! Eeeeew!

Anyway, the nurse said his spinal fluid was crystal clear and that was a good sign. Just more waiting on yet another test now I guess. They have to make sure no cancerous cells leaked into the spinal fluid ... eeeewww!

He also got another dose of chemo. On top of all of that and not being able to sleep much, he was a cranky bear tonight. He even consented to letting the nurse give him a sleeping aid. Miracle of miracles. He just won't complain about anything. I had to ask for another blanket for him because he was cold. He's so stoic about it all. (Can I have a chorus of "I'm going ot the garden to eat worms"? Anyone else know that song?)

Well his numbers are almost down to zero. Which is the goal. It also means he'll need to get another transfusion of blood. He was almost back to that pale greenish color from the day we checked him in. Why green? I don't know. Does that make him Vulcan or something? Not to mix nerd-metaphores, but he did look a little like Yoda today (don't tell him I said that :-).

He still needs a visit from a few of y'all (you know who I mean, so get your butts up there). And go ahead and give him a call if you have a few minutes. He looks forward to the little connections from the real world ... 352-871-6263.

1/14/09

The big news for today is that KD finally got moved to a better room. Yay. He's living in the penthouse suite of the BMTU now :-)

It's a bigger room with a bathroom like I said, but it's laid out the mirror oposite of his other room so he has to get used to doing everything different now. Getting out of the other side of the bed, etc etc. I guess all those years of me randomly moving all of the furniture in the house has prepared him for being flexible about these things. Either that or he'll get up to have a wee in the middle of the night and find he's out in the hall.

But it does have a great veiw, and yes you can actually see a real live tree and a patch of grass. But you can also see across the roof to other rooms (and they can see in) so I had to show him how to work the blinds :-)

So if you're going to pop in and see him, you have to go to the nurses' station and turn down the side hall now. It's the last door on the right, room 4252.

He's got more DVDs than he could watch in a year, and books and magazines coming out the wazoo (I know, I know, enough of the medical jargon, Radha!). And I switched out his electric guitar for his accoustic. So the guy is pretty set for things to occupy his time. Still the most appreciated thing right now is a phone call or a visit. He's quite disconnected from the real world up there.

Many more thanks to the most recent visitors and callers, and thanks for the wishes, prayers, cards, food and more that's been sent his way. He's keeping positive and doing great so far. More tomorrow when we find out about the lumbar puncture (yipes!).

1/13/09

Yes, there was another round of chemo today, but not the lumbar puncture (eeeewwwww!). And YAY! The DNA test came back looking great so the recovery rate statistics are on KD's side. He's got a wonderful chance of fast and full remission.

Many visitors and callers today so he was cheery and bouncy all evening. Okay, he was literally twitching and pacing around the room tonight like a caged ocelot. It's good though because his energy is up and he's really positive about this whole process. 

And especially thanks to Kar and Radha who brought a huge quantity of halava, samosa, pakoras and chutneys which is exactly what he was craving all day yesterday. And they also brought a collection of Tintin, Asterisk, Amar Chitra Katha, and Matt Groening books :-) Is it just our generation? Our strata of third-culture kids that find these comics so comforting?

There was a little emotional roller coaster today though (I'm not referring to the drama between a few of the nurses on shift who don't seem to like one of the other desk staff). This afternoon he was told he was being moved to one of the luxury rooms that just became available. The kind with a real bathroom and a shower, etc. And then some of the nurses got their wires crossed and moved another patient in there instead. Apparently it's all based on seniority on who gets moved to better rooms and KD was next in line. But he got jumped!

Not so bad after all because another patient is scheduled to leave tomorrow and he's got what the nurses call the "penthouse suite", which means KD's going to get the best room in the ward. They say it's the biggest room, and has the best view ... if you stand at the side of the window and squint down in the right direction you can see a real tree and some actual grass :-)

So if you plan on stopping in tomorrow (Wednesday) double check to see if he's moved yet or not so you don't end up in the wrong room chatting with someone's Aunt Fay or old Bubba Joe instead.

But on a serious note, and I've typed it before, but KD asked me to repeat over and over how much he appreciates everyone's support. I don't think it ever occured to him what a large and wonderful network of family and friends he's grown with through the years. He likes to imagine himself as the rebel outsider musician, the last shreds of his teenage-hood angst, with a little "nobody likes me, I'm going to the garden to eat worms" feeling sometimes. But now with nothing more to do but think and reflect, and get showered in love and support, he's actually becoming a cheerful little ray of sunshine. A regular Pollyanna ... okay, maybe not that! 

It's not the cancer that's changed his life. And not the fear of death. It's been the love from the people around him that is redefining who he thinks he is and what he wants to be. It seems like an insignificant twist on similar motivations, but I think it matters so much.

Okay okay okay enough Oprah, touchy-feely, huggy, happy-ending stuff... I'm too tired ... so just take this sage piece of advice ... 

Confucius say, "Never play leapfrog with a unicorn."

1/12/09

Well today was a full day off the IV drip and "pole", so of course KD was looking for trouble. He's doing great, lots of energy, and spent the better part of the day mooching around the ward. The nurses couldn't keep track of him and will probably retaliate by putting him back on his drip tomorrow just so they can find him when they want him :-)

Tomorrow (Tuesday) he will probably have another dose of chemo. The variable is if/when they're going to do a lumbar puncture ... for those who don't know what that is, it's a spinal tap ... eeeeewww! owwwwie! I am cringing just thinking about it. Unfortunately it is common with this type of cancer to have some cells transfer to the fluid around the brain and spinal column. So they draw some fluid to see what's going on up in the old noggin.

If the test is negative, he fine. If not, he's got another type of chemo to undergo to catch that stuff floating around his precious brain box ... yikes! I am still cringing about that test.

Still no word on the DNA test, but Dr. May says that could take a full week so absolutely this week sometime we should know one way or the other.

He's been eating like a horse, supposedly a side effect of the steroids they have him on. And he's having vivid food fantasies and starting to request odd things. Like halavha and samosas, and his grandmother's baked ziti. He gobbles whatever I bring him and then lays there like a stunned snake digesting. I could probably paint his nails pink and do his hair in little braids and he wouldn't move a muscle :-)

Oh and he wanted to make sure everyone knew he's not wasting away in the hospital. It's not like TV where he's a withered, sickly patient who can hardly talk. He's actually much better than when we first checked him in because he's getting properly cared for. I'm posting a picture at the end here so you can see he's doing good. 

And if you want to bother him, ask him if he's gotten into trouble with the chocolate milk yet :-)  He'll know I said something about his crazy/bored plan to get into trouble. 

1/11/09

It seems like Sunday KD finally got caught up on sleep and medications. He had a fairly slow day (starting with hospital pancakes) and culminationg with the whole group of guys from his band PSA showing up to visit. By now the nurses are not the least surprised by the variety of visitors coming to see him.

He won't have another treatment for a couple mor edays, so this would be a great time to call or visit if you want to. He's even drinking enough water and they're thinking of taking him off his IV drip so he can wander around without his "pole".

Special request to be more specific about his diet so here's the general rules ... his immune system is down, so anything that might contain bacteria or germs is not allowed. This includes: fresh fruit and veggies, anything prepared in a deli or restarant where it might have sat out or been exposed, yoghurt or aged cheese with live cultures or heavy amounts of fungus (eeew), pretty much anything that isn't home cooked under carefull conditions or prepackaged and pasturized. And since the medications already cause issues with his blood sugar levels (and he's diabetic already) he's trying to avoid anything with lots fo sugar or high fructose corn syrup. 

That doesn't mean he's not eating. He's got a great appetite and has been getting lots of food. He looks so much better now than when we first checked him in exactly a week ago. If you want to bring him something to eat, just let us know so we can co-ordinate it. He's got access to a lot of food and the nurses are constantly trying to get him to eat more, so with any luck, he'll leave that place weighing much more than when he went in. 

Thanks Damian for bringing in the portable DVD player and movies :-) Now KD has something to watch besides daytime cable which was making his brain melt. If anyone wants to bring him DVDs just keep it light .. he's into comedies to keep laughing. Nothing too heavy or serious. You might want to mark or label anything you lend him so we can make sure it gets back to the right person since his room is quickly becoming crowded with stuff from all over the place.

KD loves the bread Loka made (he finished the scones right away and looks sad every day that I don't bring them now), and also wants to thank Mo for the cookies and crackers (yes, Kashi is a good brand), and Kunti for the veggie pasta :-) We all know he likes to eat!

Oh and one more piece of news ... KD is next in line to be moved to one of the nicer rooms. He will soon have a private bathroom in his room with an actually door he can close when he uses the potty. How exciting! This whole experience has really redefined the meaning of "luxury" for all of us :-)

And I personally want to send a shout out to all the people at the hospital who sit eating their Burger King take-out under the "Please don't eat in waiting room" signs .. and those die-hards that take their cigarrette breaks in the "Please - No Smoking in this Area" sections :-) Fight the Power! ha ha .. I guess you gotta find the humor wherever you can find it in a hospital...

1/10/09

[From original email]

Late Friday night they gave KD more blood so they kept him awake all night checking his vitals until 6AM. He was quite tired and cranky by the time I got in to see him. 

He had a few visitors which wore him out the rest of the way so by the time he had his next treatment, he was ready for a long long nap. This was an injection, and they had to give him a tiny bit, then wait an hour to be sure he didn't have an allergic reaction. They even circled the injection site with a magic marker so they would know right away if he developed a blister or something funny. He's got so many needle marks and stuff by now, he looks like a junkie (hence the need for the PICC line which will remain for the rest of his treatment).

Other than that, nothing exciting to report. His white blood cell count is down to 400, which sounds big until you Google it and realize normal counts are between 5 and 10 *thousand*. The goal is to get to 0 of course which means his bone marrow has completely been bombed. Like shaking an Etch-a-Sketch upside down I guess. Complete reset.

On that note, I want to remind everyone that if you want to bring him anything, think about germs and bacteria. He cannot have fresh fruit or vegetables, or anything prepared in a restaurant where it could be exposed to yuck. And unfortunately he cannot have flowers of any kind. He does have some snazzy balloons now, and even though he pretends to be a grown-up, I know he likes them :-)

Same time tomorrow for an update from the KD fan club office :-)

1/9/09

[From original email]

Another uneventful day for KD today. He fortunately figuring how to sleep around the crazy hospital schedule. And he's constantly being fed by his many admirers. So he spends most of his days in a food induced haze :-)

He's due for another round of chemo Saturday... so please please please call before you go visit him. It makes him a little sick or sleepy during and after. I know he would love to see anyone who stops by, but it drains his energy and he would like to be alert so he can appreciate your visit. Even if you call from the lobby to let him know you're coming up, it would give him a minute to shake himself awake ... 352-871-6263

Still no results from the DNA test. Hopefully Monday we'll find out about that and have a more clear idea of how long his treatment would take. 

His emo haircut was bothering him so I tried fixing it today but his hair is so used to being long, that the shorter it gets cut, the more it stands out from his head. When he was a young teen and he had short hair, his grandpop used to call him a burr-head :-) I don't suggest calling him a burr-head now, but I'm beginning to understand the battle with hair like his and why it's more practical to let it grow long. Well, he really wants it buzzed into a mohawk right now but I can't bring myself to do that. 

Anyhow, now we're just settled in to wait. He's really cheerful now and even wants his POD (a portable recording device he can hook up to his guitar) so that's always a good sign. If he wants to play and write music, he's in a good place. I'll keep everyone updated as the chemo starts to do its job.

1/8/09

[From original email]

Day three was nice and quiet for KD. He just got another dose of chemo, played his guitar for a few hours, and is watching the football game now. He's doing great, and is in great health and spirits. And according to the dozens of people who come in to constantly check on  him, he's responding exactly right to the therapy so far. 

We're still waiting on the DNA test of course to give a better big-picture for recovery, but should know by Friday or Monday on that.

Except for a bit of icky-belly nausea yesterday, KD's got a great appetite ... we all know he loves to eat ... and was almost too full to eat anything by the time I got there tonight. But he did give in when he smelled the scones Loka made, and scarfed down two right away. Which is good since he needs to put on a few pounds in advance for when he's sick later on. Scones will definitely help with that :-) Very yummy!

Thanks for reaching out to him as you can. With the weekend coming, if you want to stop by and visit, maybe give a call ahead of time so we all don't end up there at once? The max number of people allowed in the room is four including him because of the air filter system, and the nurses get quite snippy if they think you're breathing his air :-) They are very protective, and frankly I bet any one of them could kick my butt in two minutes flat, so I wouldn't mess with them...

1/7/09

[From original email]

Just a quick update since not a whole lot happened today for once...

KD got another dose of chemo which is making him a little nauseous from time to time now. He got his PICC line put in yesterday (a big semi-permanent IV line that goes through a vein in his arm and into his chest), so now he has the luxury of bathing whenever he wants. We took the plunge and cut off his hair today too since it was mostly in the way. He looks like an emo kid now (if you don't know what an emo kid is, you don't need to know :-) but I swear I will go at it again and give it some shape so this isn't permanent. 

Oh, and I cleaned one of his guitars and brought it to him so he's got something to do. He's the coolest guy int he ward right now. All the nurses think he looks like Lou Diamond Phillips already :-)

Thanks to all of you who stopped by or called already. He really appreciates the support and some connection to reality after being stuck in that room for days and days. If you want to call him to just say hi or whatever, his cell number is 352-871-6263.

1/6/09

[From original email]

Hi all ... this emailing list is growing (if you're getting this and don't want to, just let me know. I've added a few people at others' requests).

Welcome to KD's official Day 1 ... he finally started chemo today! Yay! From here on out, they count him in days since he's on a complicated cycle of medication.

So this also starts the cycle of him have almost no immune system and feeling pretty crappy. There is one more test they are waiting on, checking his DNA for specific known "cancer markers" which will tell them if he's at a high risk for relapse. But if that looks good, then his in-hospital treatments should last just under one month from today. YES! in the hospital in the bone marrow ward for one whole month. Then another month for out-patient care which means sitting at home (yes, I will have to clean the whole house several times a week... yikes!) and going in for treatments. Even then he will be tested and have more treatments over the course of a full two years before they will declare him in full remission.

Where was I? Oh, yeah .. so if you want to call KD, that would be awesome... 352-871-6263. If you want to visit, that's still allowed any time of day, but be aware he is in a special ward and there are some rules. (wash your hands when you come into his room, no kids or sick people, no fresh flowers, etc) He's also on a restricted diet, so if you want to bring him food or treats, check with me on the bizarre rules there :-)

*If* the first round of chemo doesn't work, the next step is a bone marrow transplant. Which is tricky since he has no direct siblings, and he's Mexican-Indian so getting a good enough DNA match could be a problem. If only he really was Cherokee like everyone thinks! :-)

Anyhow, this is the beginning of the rollercoaster and the worst of it will be the next two weeks while they basically firebomb his bone marrow from every direction. I'm facing an almost equally challenging task of sorting through paperwork and insurance and medical leave and disability applications, etc etc etc, so this will be a very busy time. I apologize if we miss you by phone or email. Keep trying and we'll connect somehow.

Thanks for everyone who's already visited, called, or reached out. It really matters more now than ever to him.

1/5/09

[From original email]

Hi all ... if you don't want to get this mass email, let me know. Just trying to save my lazy butt some typing :-)

Monday at Shands was kind of boring. Just tests and more tests. They are being cautious about planning treatment which is okay by us. They took tons of blood from KD, but that's okay because they gave him some also and that really perked him right up by the end of the day. Tonight he wanted to try talking the nurse into letting him walk outside, which is a huge improvement from last night. His blood was just that poor. He's actually got some color back and looks less greenish-purple like he did for the last few weeks.

He was weighed and measured, and was properly gratified to find out he was 66.6 inches tall... very heavy metal... the mark of the beast :-) We also got to see an echo scan of his heart and it looks a lot like a sheep yodeling and a frog dancing. It must have been a  good heart because the tech was impressed.

Everyone is impressed by how healthy he is. Even Dr. May who is the main Grand Poo-bah of the deal. Hopefully tomorrow we'll actually find out what the treatment plan is. Then we'll know better about how long he'll be in the hospital and how long in home recovery care (I'm starting to learn all the hospital-speak, like i've joined some cult)

In the mean time, phone calls and visits are still welcomed. If you need his cell phone number, let me know. If you need help finding him at Shands, it's really easy ... park in the East visitor's garage and follow the signs for the East Lobby past the ER. They're really helpful at the desk at the far side of the lobby. (Just don't bring any bacteria with you if you stop by :-)

Once I know what's going on with treatment and time-frame, I'll be asking certain people for certain kinds of help, since I'm already exhausted and apparently need to learn how to ask for help. ha ha ... So just remember.. you asked for it!

1/4/09

[From original email]

Hi all... again with the mass email! I know .. but too tired to type more than once...

We spent ten hours in the ER at Shands (at UF) getting KD admitted today. Lot's of nice people helped, but there was still a lot of red tape and paperwork to deal with (and of course they wanted many many samples of whatever bodily fluids they could get from him).

We won't seen the actual doctors until tomorrow (Monday) so there's no specific news. He's in the bone marrow ward, which is appropriately heavy metal for him :-)  From rough guesses so far, he will be there for from two to five weeks while he gets chemo. Because of the special ward, and because his immune system will be at 0% as chemo goes on, there are limits to guests (no more than 2 because of the air purifying system; no guests who are sick or exposed to illnesses), and lists of things he cannot eat or be exposed to.

For now he does have his cell phone, so you can call him. Or you will be able to call him through the hospital once we find out the land-line number. He is in room 4210. He is very tired of course so although he would appreciate calls and visits, please keep it to the minimum, and keep it cheerful :-)

Let me know if you have any questions, suggestions, or commands :-)