2/27/09

Ah! Tired.. tea and soul-less computer is about all I can handle tonight. We spent the day at Shands and now KD is totally passed out in bed.

It was supposed to just be one shot today, the last of this chemo cycle. Then next week we'd do all of the fun stuff at the start of the next cycle. But his blood labs came back looking kind of funky, so we got the full range of services offered by the hospital. As soon as they said bone marrow biopsy, he got really depressed. Sure, he was going to get one next Tuesday anyway, but that they rushed it forward wasn't a good sign.

And his white blood cell count plummeted since the last test, so he's back on his restricted diet (no fresh fruits and veggies, no restaurant or deli food, no yogurts or anything with live cultures, no fresh flowers or plants). There's also two more antibiotic pills to add to the list. Which sucks because these tend to be the expensive ones. Yes, I've heard we can get one for free at Publix, yay!

The reason for the bone marrow biopsy today is that they found 'new blood cells' in his blood. These are immature cells that shouldn't be present yet. Whenever something abnormal shows up in the blood, they want to look at the marrow to see what's going on. So KD got some lovely Ativan (lorazepam), and got jabbed with a few hugely overgrown needles.

And he was also low on blood so they put in a few quarts. When he gets blood, they give him benadryl. Along with the anxiety from the tests, and the other meds they gave him, he was toast by the end of the day. He'll probably sleep Saturday, and his leg will be sore from the biopsy. He's alos probably going to be very cranky. He was cranky tonight even though I made him pancakes.. who can be cranky after pancakes?

Gosh, I'm rambling now. I'll bugger off before I write five more pages about life in the BMTU. Nighty night!

2/26/09

Take away the right to say "fuck" and you take away the right to say "fuck the government."  --Lenny Bruce

Ah ha ha! Freedom of the press! I will not be silenced! :-)

KD took the opportunity to get out of the house while I was distracted today (I swear I am not keeping him prisoner!). He stopped by his work and got teased by all of his co-workers which I'm sure he missed. The teasing I mean. How else do you explain it? I know for a fact he loves starting arguments with people just to tick them off. Everyone at Invivo has probably been saving all of their bald, cancer, and sick person jokes just for when he next showed his face there.

My above hissy fit about censorship is that KD discovered there are actually people that read this blog (I am still uncertain). He ordered (ORDERED!) me to watch what I put here. Ha ha ha! He should know better by now. Fourteen years with a stubborn redhead should have taught him that issuing orders only fuels the fire :-)

So I am selling secrets and embarrassing stories about him. The more money you offer, the deeper and darker the secret ... bwa-ha-ha-ha!

Okay, okay, I won't kick the guy while he's down. (I prefer cash, by the way.) And he was really down after getting home. He couldn't have been gone all that long, but he got back and crawled into bed for a two hour nap to regain his strength. It must be frustrating to do something that you once considered slacking off, only to find it exhausting now. As long as he mooches around the house, he feels normal, but one trip to the store and his mortality comes rushing back into the picture.

Tomorrow is the last day of this cycle of chemo. The next cycle should start next week. Pretty much the same as this last one. So two weeks of daily shots which make him nauseous for several hours afterwards. And he'll be tired from it all too. Then two weeks of twice-weekly chemo again.

I am going to make sure to ask his PA tomorrow about drinking. Not that he wants to go out and get trashed listening to live metal music. But a social pint of beer or glass of wine shouldn't be too strange, right? There's a handful of birthdays coming up (Samba turning 37? Ashley turning 20? Sean turning *doh* i won't say it!). He actually has a social calendar to attend to this March, even if he can only make a half-hour appearance at any event.

Anyway, drunk or sober, he still manages to break things and do damage to the house. Ask him about the Coffee Incident. That's a good one :-P

Seriously .. make me an offer. I have a collection of blackmail-worthy info about KD. And I could use the cash to feed my shoe shopping needs...

2/25/09

"How are you doing?"

We ask that a lot around here lately. KD asks me, I ask him, people ask us... never ending. It's easier to respond with symptoms or schedule complaints or mundane issues. Or just a nondescript "Okay."

There's no way to start talking about how strange life has become lately. And no way to tell if the person asking just wants general confirmation that you're alive and plan on continuing to be so. Or if they want a philosophical treatise on spiritual realizations on the journey through the shadow of death.

And beyond that is the desire to keep private a little bit of yourself. What KD goes through with dozens of people at the hospital interested in everything from his brains to his bowel movements, to the molecular contents of his blood... he must want to protect what little privacy he's got left. We all know KD's never been a chatterbox (unless he's had a beer or two more than necessary). 

That guy in the black heavy metal t-shirts and long rock star hair is not an enigma wrapped in a puzzle wrapped in a conundrum really. It's just one of the sides he shows. I know the other sides of him. I won't go there because he gets cranky when I talk about him (yes, i get the irony of that statement in a blog ABOUT him). But the point I'm getting at is that when life changes like this and suddenly you're in unfamiliar territory without a map and in a car that won't get out of first gear, you have only the stars to navigate by. He is only able to come back to "Okay" by the points of light guiding him. And yes, by points of light I mean his family and friends (I know that sounds soppy).

I cannot say strongly enough how appreciated it is that people still reach out to him .. call or email.. and ask that question "How are you doing?" You probably get a mundane answer to the question. Maybe you only get "Okay." But from where he's standing, "Okay" is the best place to be, and the only way to describe in less than ten thousand words how he is really doing.

So for sitting through my monologue on something having nothing to do with cancer itself and everything to do with being a human being, here's a picture of another side of KD not many people have seen. It's one of my favorite portraits so far:

2/24/09

Today KD was agonizing about the day when they take his PICC line out. Not that it's going to happen any time soon. But he's not looking forward to that because it will probably hurt.

If you don't know what a PICC line is .. well you're lucky so far! It stands for peripherally inserted central catheter. It's basically a semi-permanent tube that is inserted into the arm into a major vein, and slid up into the chest until the end sits close to the heart. The exterior part has several heads where nurse can draw blood, give injections, give chemo, hook up IV lines, etc etc (all color coded of course). Once it's settled, it doesn't hurt much. As long as you can forget that you have this thing inside you! Yuckers!

But that he's thinking about the day they remove it is a good thing. This is a guy that is going to get better god damn it! :-)

Today KD had his Vincristine IV drip and an L-Asparaginase injection. It's the Vincristine that makes him achy and sore like he's getting the flu. He gets one more L-Asp shot on Friday and that's the end of this cycle of chemo. The next cycle is pretty much the same as this month. Two weeks of daily treatment, then two weeks of twice-weekly treatment. (We're still arguing about whether he has to get another bone marrow biopsy and lumbar puncture at the beginning of the month. If we can find the schedule we'll know, but until then the debate continues...)

I watched CSI (at CBS.com) tonight while I ate dinner and am so grossed out I can't think of a joke to close with. I mean, eeew! Why do I do that? I usually have to watch the icky parts with my eyes closed anyway. And here I am EATING food and watching them poke around in human tissue. Ewwww!

2/23/09

Another boring day. It's probably good we don't have cable because KD would probably be addicted to daytime TV by now. As it is, he totally fixated on Dexter ... someone gave him the first two seasons on DVD and it's been non-stop. He just finished the last episode tonight and is completely lost without it. And of course he thinks about serial killers all the time too (Google the TV show if you want to know what I'm talking about :-)

Tomorrow (Tuesday) is another all-day trip to Shands. He has a Vincristine IV drip again and of course a shot of L-Asparaginase (yay! I think I've finally learned how to spell it!). Also he's been kind of tired and droopy for a few days, so they'll probably want to give him blood or something. 

Even though KD is facing this challenge with a great attitude, I don't want anyone to think that this is easy for him. Every day at the hospital clinic he sees people who are in the same situation he is in. Some of them aren't doing so well. Some are being taken back to sterile in-patient rooms and being put back on serious care. Some are suffering emotionally from the threat of this great scary thing taking over their bodies. Some are also on their last stretch of care and soon will be declared cancer-free. 

But there's no guarantee for him. It's all statistics right now. They say 80% chance of full remission. So in the back of the room where we pretend it doesn't exist, a little voice says that there's still a 20% chance of maybe not such a good outcome. As cheerful as he is, there's always going to be that little voice, which is so much louder than a shout.

I have a good quote to share first: "The manner in which one endures what must be endured is more important than the thing that must be endured."

We rarely value the ability to endure hardships, but it is a necessary skill both physical and spiritual. It is a strength of character that isn't about a your ability to conquer something outside of yourself. It is about being stronger than the things inside of yourself ... fear, anger, jealousy, ego, lust, pride.

Before I commit myself to get even more preachy, I'll just say that as the person who has been there for the terrible moments, and has been there for the lows of spirit, and has been there for the long dull hours of waiting ... I can say he has not wavered from his decision to endure this process with grace and acceptance. And laughter. 

2/22/09

Pancakes! It's got to be the best way to wake up in the morning.  KD rolled out of bed in time to be stuffed full of pancakes, and then he sat there for an hour trying not to fall back asleep with the Sunday paper. I've figured out that the only way to keep him from bouncing off the walls is to keep him full of food. (I am still having images of a fat boa constrictor laying in the sun, digesting.)

He was so happy to be allowed to drive himself to the pharmacy to pick up his medication today. And he got to drive my car which actually goes fast when you step on the gas (new high-performance tires too!), instead of his car which ... doesn't.

Except for his antibiotics pill which he takes only on the weekends, he's only taking Valtrex ... yes I know. I Googled it to and was surprised to find out it's usually used to treat herpes. Yoinks! But with a little digging I found it's also used with leukemia because it's an anti-viral. It can't stop you from getting a virus, but if you get one, it stops it from replicating itself and taking over your body. Very handy when you don't have a functioning immune system.

He's taken to pacing up and down the hall and also bouncing in place because he need exercise. The nurses say he's not to get any serious exercise. He was delighted to find out they approve of his recumbent stationary bicycle though, and he wants to go over to his apartment to get it at the soonest possible moment.  (Anything to stop him from standing behind me and bouncing while I'm on the computer! I think I'd get away with murder due to temporary insanity for that. No jury would convict me!)

Okay .. I'm back... I wanted to close with a joke because it's Sunday and I hate Sundays. But I got stuck reading lawyer jokes and laughing my arse off. If you want to do that, you can Google lawyer jokes. You don't need my help. Instead, I love this Rumi quote...

“All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that, and I intend to end up there.”

2/21/09

KD had a fairly relaxing day today. I think he got out of bed at the crack of 10:00 or something. It's like a modified rock star lifestyle. Sleeping in late and going to bed late. People managing his schedule and arranging all of his appearances. Chauffeurs to drive him everywhere. Women are still trying to get their hands all over him, except now it's the nurses instead of groupies. Drugs. Music. Food. What else could you ask for? Besides healthy bone marrow, I guess.

On the other hand, I spent the better part of the day unraveling the coded and complicated web of paperwork that has been showering down on us since early January. I finally had to gather ALL of the paperwork we've been getting and start a series of spreadsheets in Excel to track appointments, treatments, doctors, medications, fees, insurance, dates, etc etc etc. All KD heard from me today was my shouting about 81 cents. Somewhere, someone made an 81 cent error and it kept popping up, making me insane like something out of an Edgar Allan Poe poem.

But finally I have it all done and I can see what we're being charged for this very advanced and chaotic series of treatments. Some things are still a mystery. Like for the 20 days KD was in the hospital in his special room, there's a charge for "ICU" totalling over $42,000. Yes, that's the right amount of zeros. I'm assuming this has to do with the complete germ-free environment he was in for the duration. But I still had to double check those zeros again.

Don't have a heart attack (I've had a few so far and they're no fun). Once the insurance company is done their secret handshakes with the hospital, and someone has kissed the Don's ring, the final price to us is much less than that. I just hope this doesn't end up like Prizzi's Honor and I'm asked to go ice some guy one day in return for the favor I'm getting now. (Oh my lord, now I'm just hearing lines out of The Godfather, and it's no comfort.)

I'll leave you with good advice from Don Corleone himself then: "Do you spend time with your family? Good. Because a man that doesn't spend time with his family can never be a real man."

2/20/09

This is getting a little Mark Twain-ish lately. KD went to the clinic for chemo. He came home and ate. He slept. He's tired and bored. Day after day.

That's how it is right now, and later he'll miss these days of boredom. The most exciting thing of the day was our morning argument over the meaning of the word list and why when you're making a list, the things on the list need to be in a list. Yada yada.

He's down to one pill daily (very pretty blue color too), and an additional one daily on the weekends. Very simple compared to some of the more involved pill schedules we've had to navigate. 

I was originally trying to find some good cancer jokes online for everyone but they're all pretty bad. This is the best I could find. 

The history of human medicine:

"I have a sore throat." ...

2000 BC : "Eat this root."

1200 AD : "That root is heathen, say this prayer."

1500 AD : "That prayer is superstition, drink this elixir."

1800 AD : "That elixir is snake oil, take this pill."

1900 AD : "That pill is ineffective, take this antibiotic."

2000 AD : "That antibiotic is artificial - here, why don't you eat this root?"

2/19/09

Another quiet day of KD sleeping a lot. He was still in bed when I left for work, and not long after I got home he went down for a nap. Even now he's sitting in the living room like a zombie, half-asleep and cuddling one of the cats.

I was not a witness but the big excitement for the day was that he got to drive for the first time in about 8 weeks. He took his car out to La Crosse to see his dad briefly. Or so I hear. He may have been drag racing up and down I-75 for all I know (doubt it because he drive a PT Cruiser haha). It must have worn him out because, well, see above. He's been asleep since he got back pretty much.

We get to go in to the clinic Friday for another shot of L-Asparaginase (no I still can't spell it; still have to look it up). This is the one making him tired. He'll probably be a zombie most of the weekend. Then back to Shands on Tuesday for more L-Asparaginase and a Vincristine drip. But this is the easy part. The whole cycle starts again at the beginning of March with the lumbar puncture, then two weeks of daily shots, etc etc etc. Very glamorous lifestyle, eh?

2/18/09

KD slept a lot today. I left for work at 10:00 and he just barely cracked an eye to say good bye. Even the cat had gotten up and eaten then come back to bed at least. He's pretty tired, and the simple rule is to listen to your body right now. When you're hungry, eat. When you're tired, sleep. 

Oh, and listen to your body when it says it's probably not a good idea to play hacky-sack with a tennis ball in the dining room when you can barely stand up straight, darlin' ... you know i mean you! (I looked up in time to see a tennis ball go flying right past the light fixture and KD limping around in a circle, clutching his chest. Yeah, THAT was a good idea :-)

We got a package from up North of hats for KD's bald head (thanks Cathy!). Apparently there's a law about selling winter apparel in February in Florida. It might scare the tourists. The hats are kind of necessary now since what's left of his hair is falling out faster this week. Not that you'd notice because it's just barely there to begin with.

Hopefully we can make it through another few days without having anything major in the house broken because KD is bored. There's an appointment on Friday for anther shot, and if he feels up to it, he's going to try visiting a few people over the weekend. Anything to get him out of the house! He's starting to climb the walls :-)

2/17/09

It's nice to know hospitals are trying to be careful, but it sometimes leads to long days waiting around. Like if they ever need to give KD blood, they check his blood type first. Even if they gave him blood the day before and know what type he is. It's how they roll, I guess :-)

So today he had his IV drip of Vincristine. And the L-Asparaginase shot was to follow. Since it can cause an allergic reaction, they first do a test, which means they draw a circle on his arm with a magic marker and inject a tiny bit under his skin. After ten minutes, if he's failed to blow up like a balloon or sprout a rash all over his body, the are sure he's good for the whole dose.

Last time he was fine, but today the area inside the circle got a little puffy. Not enough to cause alarm obviously since they went ahead with the shot.

It took the better part of the day for these two things to happen. They always take his vitals and then draw blood for labs. Then they order the chemo treatments from the pharmacy since they are prepared only after the staff has physically seen that he's ready and waiting. Lots of waiting around. And then afterwards he had a good long nap and a big (healthy) dinner. It's amazing that that's a full day in the life of a cancer patient. 

Oh, and the great car debate has been put to rest. He's now allowed to drive short distances as long as he isn't taking meds that tell him not to, and also as long as his labs (blood results) confirm that he's healthy and functional. Which is really begging the question since they guy hasn't got many places to actually go. But neener neener, yes he is allowed to drive. 

He's got Wednesday and Thursday to recover and build up strength, then Friday he goes in for another shot of L-Asparaginase. This is the one that stops the cancer cells from being able to absorb the enzyme they need to grow. Which means a lot of cells will die off, causing his body to get sluggish while it cleans the dead cells out of the system. Kind of like what happens when you're taking a shower and someone flushes the toilet. Everything goes wonky for a few minutes because the water pressure is being diverted to something else.

If you want to call or stop by to see KD over the next few day, please do. I will also attempt to get books, DVDs, and other gear back to rightful owners soon before it gets absorbed into the general clutter of his room. Thanks everyone for all the support and help!

2/16/09

Tuesday KD goes in for a bit of chemo. An IV drip and a shot. I've been talking about it a bit because these ones have unusual side effects like tingling fingertips. And he usually gets tired afterward. So the rest of the week he'll probably sleep a lot.

Which is kind of sad because he's been feeling so much better these last few days. Most of the day today he had his guitars out and was playing, trying to grow back the calluses on his fingers and strengthen those muscles again. 

On the flip side, he's become addicted to Dexter since someone gave him some DVDs of the TV show. And he got to see the newest Rambo movie finally. He's had a lot of dreams of fighting and combat. Probably an emotional side effect of the cancer. Okay, I won't go there. But really .. how connected are we to our bodies on the cellular level? A lot more than we are conscious of, I think.

One more good thing that has come from this is that my mother has been spooked into finally going to a dermatologist and having her skin looked at. She has to do a facial treatment for a bunch of small pre-cancerous cells. Something as real as what is happening to KD seems to be rippling outwards and inspiring other people to take better care of their own health. Regardless of whether you believe in reincarnation or not, suffering a health crisis is not something worth wasting your time on (this time around or any life time) if you can avoid it. Right?

All right, all right, I won't go all new-age hippie again. So KD ... he's still doing good. Moving forward. Hopefully by August he'll officially be completely in remission and only on a 'maintenance' schedule for the leukemia. Sounds like a long way off, right? Well, it'll be eye-ball boiling hot around here sooner than you think and by August we'll be desperate for something to celebrate. So maybe we'll be throwing a Remission Party! :-)

2/15/09

We had a family lunch at a restaurant (that shall remain nameless since I don't care for the food much at all), and KD was feeling well and decided to go. This was the first real outing since he was diagnosed. He was self conscious about his lack of hair and went mental about wearing his hat inside while eating or wondered if that would appear rude. He straight out refused to wear a mask but I won't tell the nurses, I swear!

These last few days have been "eating days" where he just can't seem to get enough. After finishing his lunch (and this place does bottomless salads and bread sticks) he was still hungry. I was afraid he would sneak the rest of the kids' food while they were playing under the tables. He even did coffee and cheesecake for dessert. 

Hopefully he's got enough reserves for this coming two weeks of chemo since he switches from daily shots, to IV drip of Vincristine (weekly) and L-Asparaginase injections (twice weekly). By nature, the chemo should make him kind of yucky sick because the cancer cells are dying off by the thousands which increase toxicity in his blood as they all need to get purged.

The great car/driving debate rages on and I may have to remove his alternator or something drastic to keep him off the road, the crazy guy! This is the guy who routinely accuses walls and furniture of leaping out and attacking him. I can't imagine what it would be like to have him behind the wheel of a car (granted it's just a lousy PT Cruiser that gets up to 60 miles an hour inside of five minutes if the wind isn't blowing hard). Har-dee-har-har .. I slay me!

On that note:

I went to a bookstore and asked the sales woman,"Where's the self-help section?" She said if she told me, it would defeat the purpose.

2/14/09

KD is having a hard time adjusting to having no hair. I've discovered that it's very karmic though. For years he was evil about touching an ice cold bottle of beer to the back of my neck and laughing when I screamed. Now I can put my ice cold just-washed hands on his bald head and make him scream. I like this kind of karma... does that make me a terrible person?  :-) 

I have to have some fun at his expense since he's full of energy and getting into trouble lately. We even had an argument about whether he was allowed to drive or not. They say on all the paperwork that he needs the doctor's permission to start driving again, but he claims that they never told him NOT to drive so he should be allowed to. I am going to hide his keys so it's never an issue. 

It's almost easy to forget that he's got cancer some days. I'm used to the bald thing now. He looks healthier and his color is back to normal. And then he moves his arm and the ports of his PICC line rattle out from under his shirt sleeve, and I am reminded he's got this surgical tubing going into his arm and through his shoulder into his chest because he's got to be jabbed by needles all the time. It's almost like hearing the news all over again when I get reminded suddenly like that.

2/13/09

Yay it's Friday and the last day in the long two-week part of KD's chemo. He's so tired of it. It'll be nice to only have to go to Shands twice a week for a while now. He might actually get some rest and get a little bit of a life.

Today he was super hungry all afternoon, and craving junk food. So of course he had to splurge and order out for pizza :-) I don't know what's happening to his great diabetes diet he was doing so good with. But if he's willing to eat, I encourage that. He's only gaining back some of the weight he lost. He's still down about 10 pounds.

He was also feeling well enough to take one of the dogs for a short walk. I have to wonder what else he gets up to while I'm out of the house. Will I have to get a babysitter so he doesn't get into trouble because he's bored? 

2/12/09

Yes yes yes! I know I didn't post yesterday. Nothing bad happened so don't get your undies in a bunch :-)  I was just exhausted.

Yesterday we thought it would just be a quick appointment at Shands for another shot and some labs maybe. But no, they decided his hemoglobin numbers were down and they needed to give him a few units of blood. This would take hours, so I ran home and brought him lunch back and his iPod and book so he wouldn't be bored, and planned to come back to get him when he was done.

Not ten minutes after I left (to drive all the way to Alachua) they decided he had an obscure blood condition that meant they would have to go outside their blood bank to find a match for it. This could take a while and they said to just go away and come back the next day for both units at once. Of course I was gone so KD said he was pretty much stuck there regardless, so they scrounged the right kind of blood from somewhere (I don't even know if I want to know where from).

This of course dragged on all day. I was finally able to come get him just in time for rush hour which meant it took exactly 39 minutes to get out of the FREAKING parking garage. I am not exaggerating here. A full 39 minutes in the dang blasted parking garage going from level three to the ground level. Not that I'm still irritated by that or anything. &$#*&%@#!

Since they had the other unit of blood already, today was much smoother. Too smooth. I had barely dropped him off and gotten out to Alachua when he called to say he was done. So drive all the way back to Shands, drop him home and make sure he was settled, then all the way back to Alachua again. It's a good thing I don't mind driving.

The chemo shot makes him a bit sick and out of it, so KD's been kind of droopy and cranky this week again. Hopefully he gets time to recover since the last two weeks of the month are a different schedule of different shots. Once a week he gets a Vincristine IV drip, and twice a week he gets a shot of L-Asparaginase. These have their own fun side effects of course (like the Vincristine makes his fingertips tingle).

Those things sound kind of scary, but they're really not so bad. Vincristine is derived from the Madagascar periwinkle (family if Vinca, hence the name) and has been used historically as an herbal remedy. It's been used in cancer treatment since the '50s, which doesn't say much except they probably know it works by now, unlike other '50s miracle medicines that went down in infamy.

L-Asparaginase basically starves the cancer cells. Normal cells can make their own asperagine which is an enzyme, but ALL (his type of leukemia) cells do not make that enzyme; they use the floating enzymes in the blood. L-Asparaginase makes these cancer cells unable to grab the enzymes so they starve and die. Which is a good thing! Die you little bastards!

On that note, I'll leave you with a favorite portrait of the NEW & IMPROVED KD .... yes, that's a smile on his face!

2/10/09

It was a fairly quick trip to Shands for KD's chemo shot today. This is a shot he's got to get four days a week for last week and this week. So by now he knows that this shot makes him a bit funny in the tummy for a few hours after.

I tried an interesting anti-nausea measure today. I gave him a book to read. A food book. Like Water for Chocolate. Not only is it all about cooking and food, it's about Mexico, so it should grab his attention. And it's definitely made him hungry. I wonder if it would have been better to find him a copy in Spanish so he could also brush up on his language skills?

After this full week of that one type of chemo shot and daily pills, he switches to another kind of chemo shot and chemo IV drip a few times a week for the rest of the month. Then he goes back to the daily shots for March. Yes, it's weird. We have a little calendar they gave us with these things all mapped out and highlighted with different colors.

Other than that, he's having trouble adjusting to having no hair. I'm used to looking at him by now, but he gets all funny if he takes his hat off. When the sun hits it or the breeze, it makes him jumpy. Which isn't the worst side effect to be troubled by actually. 

2/9/09

For a change of pace, and because the weather was gorgeous, I dragged KD all the way out to O'leno State Park this afternoon. He's only been seeing the hospital and home, and maybe a fun trip to the pharmacy once in a while. So doing something outside and in a different environment helped cheer him up a bit.

He got to jump on the suspension bridge. And pretend to push a big rotten tree into the water. And he found an inch worm and let it crawl all over him. He was irritated that I had the camera and kept snapping pictures of him so he grabbed the camera and tried to take a picture of both of us. Typical though, raised as a spoiled only-child, he managed to take a good picture of himself and part of my ear. It went down hill from there until he couldn't keep a straight face for a single picture. I have dozens of outtakes from that camera to upload, but the best one is below.

Tomorrow starts another four-day marathon of hospital days for shots and stuff. By Friday he'll probably be exhausted again. For now he's relaxed and rejuvenated by an afternoon outdoors. And of course, much better for laughing and goofing around with the camera...

2/8/09

My back-up dog Sammy isn't the most aggressive or physically fit of the two animals, so when KD wanted to go walk the dogs with me tonight, he took Sammy and I took Bella. Sammy is a bit chunky and ... well frankly he waddles a bit. So I thought they would make a great pair for a walk. It was only a few blocks. Not even a half a mile.

It was brave of him to even risk coming with us. He did make it the whole way too. But he slowed down about 1/3 of the way from home. And when we got home he had to rest. Still, it was a good effort. (He'll be sore tomorrow, I bet.)

Not much else exciting on a sluggish Sunday. My sister brought a box of delicious goodies from Fresh Market to help fatten him up. While she was here, Ezra got to play with his sick 'Auntie' KD. And of course they're on the level with humor so KD had Ezra laughing so hard he was drooling. Which is cute when you're two. I've found that drooling while laughing as an adult isn't quite as cute.

He's still having drive-by headaches because of the lumbar puncture. They rush up and throb all up and down his head and neck for less than a minute, then leave randomly. And his hearing is muffled sometimes as well. He's due for another lumbar puncture at the beginning of March, and then the chemo cycle that lasts the full month of April really sucks because he'll have one every week. Not fun at all.

Oh gosh, now that he's feeling much better, he's returning to his old self. But with time on his hands, he's T-R-O-U-B-L-E. If anyone wants to babysit him or entertain him, please let him know. If he was quiet for a while, I used to assume he was asleep. Now I actually go and check to see what he's getting into :-)

2/7/09

Yay! Another boring day! Not much to report because not much happened. Yes, that's a good thing :-)

Let me clarify that ... KD didn't do much. I on the other hand did five loads of laundry, cooked, cleaned, did yard work, walked dogs, etc, etc, etc, ... but anyone who knows me will not be surprised about that. 

KD did get out the drill and fix one of the boards in our fence that popped loose. I think he purposefully waited until I went off with the dogs because I probably wouldn't have let him near power tools in the shape he's in. Yes, he's functional enough to be able to think his way out of trouble, so that's a good sign (for him, not me).

He spent a few hours hunched over his laptop. Apparently he has developed a taste for Doom Metal. If you have no idea what I'm talking about, you're probably a normal person and should pat yourself on the back. 

Hopefully Sunday is as quiet as today was so he can rest up for the next week of daily chemo shots. Then it's down to only two days a week and the pills. We'll see what happens. It's all just a day-to-day adventure.

2/6/09

Another day in the clinic for a chemo shot and blood drawn for labs. Yay, more sitting around waiting. 

The test results from the lumbar puncture came back as clear and beautiful as ever. This isn't going to be the last one though, and he's not looking forward to more. They're the worst thing about this whole process so far. He gets pretty bad headaches from it for days.

The bone marrow biopsy came back at 2% saturation or something like that. We don't have the original test paperwork from the biopsy done at the new year, and neither did the nurse, so we don't know what kind of improvement that is. We have to wait until they get a copy of the first biopsy from the lab to compare it to. Even then, he will probably get another biopsy done at the beginning of March. He's not declared officially in remission until the biopsy comes back at 0%.

The full chemo intensive treatment he is on is called the Larson Regimen, which is a series of cycles covering seven months. February is month two, so he should be done the active treatment portion by the beginning of August if all goes well. Then he enters the "maintenance" part of the schedule which is a clinic visit once per month, and a series of pills. 

KD's immune system is still holding strong, which means he can stay off the restricted diet, go outside, visit people (with a mask on), pet the dogs and cats, etc. If the weather gets nice, I'd like to take him to a park over the weekend so he can walk and get exercise in a different environment. All he sees these days is the hospital and the inside of my house. And sometimes I have to drag him into CVS to fill his prescriptions. That's excitement! If he had more energy, I'm sure he would be climbing the walls with his teeth and toenails by now :-)

2/5/09

I'm posting a bit early today because not much happened and we're both crawling into bed early to avoid our individual maladies.

KD spent the better part of his day at Shands. He was supposed to only have gotten a chemo shot. But when he got there he was feeling a bit funky so the rolled back the process to take blood and run labs to make sure everything was okay. Nothing out of the ordinary so they ended up giving him his shot and sending him on his merry way.

He's having killer headaches from the lumbar puncture. And a bit sick in the belly, although that could be the medication or my cooking. I won't try to defend myself on that one. It must have been bad because he actually ... hallelujah ... was actually willing to take his anti-nausea medication for the first time in weeks. Now I am just waiting to hear the melodious burping he will hopefully succumb to. 

Did you ever think the sound of someone burping would be this good? Well, any of you with kids probably have a similar feeling about bodily functions. Recently a friend (Damian!) was so proud of his new baby girl's first solid poop, he posted message to his mom on Facebook. A year ago this would not have been as momentous of an occasion in his mind. So here I am getting excited about KD burping :-)

Enough about that. Yuck! Right? On a less gross note, KD is doing very well otherwise. He's actually putting weight back on. A whole ten pounds! Yay! He needs another ten pounds before he's at a healthy weight, but he's getting there. And although his hair's not really growing much, there's still quite a bit of stubble there still.

Tomorrow is another day at Shands with labs and a shot. The he's got a "three day weekend" of not having to drag his butt to the hospital. He's still got chemo pills daily as well as all of the other pills. But that's better than braving the parking garage and sitting in the waiting room for ages at the hospital.

Oohh! There's a burp! Yay!

2/4/09

Okay, I am a masochistic person I guess. I really really really (really, really really....) hate needles. Like hypodermic needles. Yuckers! Well yesterday while we were waiting for the nurse in the exam room, I was sitting with my back to the sharps disposal box. This is a red, opaque container where the staff discard all needles and anything sharp with biohazard issues (blood and eeew). But mostly needles. 

So of course my neck is prickling like crazy. I know they just did a bone marrow biopsy on KD in this room the day before. And they're about to do a lumbar puncture on him that day. And they use these giant ugly needles to do these things. What do you imagine I did? Sit there and maintain my treasured ignorance? No!

Silly me, I figured if KD had to have these horrible things done to him, I could at least know a little about it all. So I crane my head around and look into the open mouth of this container. I am not kidding you when I say these things are huge. Really. Like as big as a No. 2 pencil, with a handle on the end so they can get a good grip I guess. 

But the thing is, I'm not the crazy one out of us two... KD actually wants one of the damn needles as a souvenir when it's all over. Eeeew! That's as depressing as the WWII vets who keep the shrapnel from their war wounds. I guess you have to keep something around besides the scars and the bad memories to prove you lived through something that some people didn't.

Anyway, it gave KD a laugh to see me practically writhing on the floor in mental agony at the sight of the needles. Arrrgh!

Well, today I was at the low (snot-bubble, hacking, coughing, disgusting) phase of being sick so he got his mother to take him to his clinic appointment for a chemo shot. We thought if I showed up (dripping and spewing germs) at the BMTU clinic with a room full of patients with no immune system, they would probably spray me down with floor disinfectant and drop me down the nearest elevator shaft. It's awkward enough here at home keeping a good distance apart so he doesn't get my germs.

KD's on the low side of a roller-coaster hump today. The only way I can tell is that he didn't spend most of his time foraging in the kitchen. He had that heavy dose of chemo a few days ago and by now the effects start to kick in (the cancer cells are lycing which creates a build up of toxins that need to flush from his body). With any luck he'll just be tired tomorrow and Friday. He's been pretty lucky avoiding some of the other heavy side effects.

To close on a good note, and for another dose of the magical medicine called laughter, here's a favorite new limerick:

There was a young woman from Leeds,
who swallowed a packet of seeds,
within half an hour
her tits were in flower
and her fanny was covered in weeds.

(I never said this blog was rated G, by the way)

2/3/09

I brought KD to the hospital today to get all kinds of stuff. After his shot of Ativan, he wasn't very concerned about much (see previous about how fun Lorazepam is). Lumbar puncture went well (still very eeew!). Then a shot of chemo. And a few IV drips of chemo. And he came away from there (very groggy) with a prescription for chemo in pill form too. So we are in full swing for this next cycle.

The pill he's got has listed side effects that include nausea and hair loss, so we may see a bit of that happening. He's on that pill for 14 days. And he's got the schlep in to Shands pretty much every week day also for a shot and an assortment of other pokes and prods and taunts. 

Kunti was able to bring him home finally this afternoon because I had to go to the office, and by the time I got home at 4, KD was capable of uttering about three sentences before passing out completely in his chair. I finally coaxed him into lurching off to bed so he didn't have to sit there looking like an uncomfortable mannequin. But one time I went in to check on him, I swear to god his eyes were mostly open and crazy looking. I actually woke him up to make sure he was still alive. Talk about heart palpitations!

He's pretty much a zombie tonight. I don't know how I'm going to roll him out of bed and talk him into going out in the cold to get yet another shot tomorrow morning. And I've been sneezing and snuffling all day and really shouldn't even be in the same room with him because his complete lack of immune system. I may have to put him in the truck when we drive anywhere so as not to infect him with my flu. Yuckers. It's like the Night of the Living Dead around here ... brains! brains! We want your brains!

Anyhow, you gotta laugh or you'll cry. An update on the jokes posted next to the 4th floor elevator:

What do you find shivering at the bottom of the ocean?

A nervous wreck!

**bad-dum-BING!**

Thank you ladies and gentlemen. I'll be here all week. Make sure to tip your waitress! Good night! You're beautiful!

2/2/09

Okay, so this is the one-month anniversary of the day we heard the big "C" word. Well first it was the big "L" word and it took a few minutes for the big "C" word to come out from hiding behind the "L" word. Why does leukemia sound less scary than cancer? And why is cancer the same for tumors as it is for one of the Zodiac signs? And is it harder to pick up women in a bar if you best line is, "Hey baby, what's yer sign? I'm a cancer!"

Enough of that silliness. Today was the big day of the bone marrow biopsy. KD was incredibly tense all morning which was why I scheduled it for 8:30; to get it over with. When the nurse offered something to relax him, he jumped at it. Let me tell you, within twenty seconds, that shot of Ativan had him giggling and relaxed as a teenager with weed. If you don't know what this stuff is, go look it up on Wikipedia under its real name Lorazepam. Suffice it to say, he was quite relaxed and happy until we got home and he crashed out for a few hours.

The bone marrow biopsy itself was easier than the first one last month. This nurse does them often and knows what she's doing. So it was much better than he was anticipating. They asked him to sign a release that if they drew more than they needed, they would be allowed to freeze the rest and use it for study later on. Of course he agreed because who knows what little bit would help others with this problem.

The bad news is that before they start chemo tomorrow, they're going to do another lumbar puncture (spinal tap). They have to keep monitoring the spinal fluid until a certain stage of treatment shows he's out of the danger zone. It is not a high risk, but more common than they like it to be that this type of cancer breaches the fluid and does serious damage to the old noggin.

We've also got a printed copy of the cycles of his treatment now, so we know generally what to expect in the upcoming months. There's one cycle where he's got to get a lumbar puncture every week along with mild "cranial radiation" while they stomp out any residual nasty old cells floating around. And of course it's pretty certain that he'll have a few more bone marrow biopsies to endure. 

I don't know. I like to think that all of this is in his best interest because it's a method and treatment plan they've been doing for years. I like to think that the alternative could be worse. But then I'm also not the one being jabbed and stabbed and poked and fed pills. So maybe KD is taking it with his usual stoic attitude and pretending it doesn't bother the hell out of him. I do know that there are some things I can't watch or even be in the room for.

(and now for the soppy tangent .. feel free to not read further .. it's late and I am just rambling now)

This blog is called "happy.sad.mad" because those are the rudimentary emotions. The kind kindergartners can identify. Most household pets can identify them too. From there you mix them up in different quantities and add memories and experience and expectations and hormones and you get the potent cocktail that is the human existence. 

But on day one, when we got the big "C" word, it was like being knocked down to the roots of emotions. You start with nothing. Shock. Like the h-bomb on your brain. And from there you start all over with the basics. Am I happy? Sad? Mad? Pick one that matches the feeling in the pit of your stomach. This isn't a test. There is no right answer. 

I won't bullshit you here and say I haven't felt a little bit of all of them. And I won't attempt to speak for KD about emotional stuff. And again, it's not me with cancer being poked and jabbed and fed chemo. Hell yeah, if I could go back and change it, I would make the cancer never have happened. Who needs that stuff?

Last month I was given the opportunity to see my personal beliefs put to the test. And I think I got it right. Happiness is being where you know you should be. Doing what you know you should do. Being in this moment. Being here now. Stealing laughs. Being goofy. Celebrating little victories. Being surrounded love and friends and family. And being allowed to love all of them without holding back. 

Ha ha, okay. Not to sound too much like a Robert Fulghum book (All I Ever Need to Know I Learned in Kindergarten)  or a Ram Dass book (Be Here Now) .... on the other hand, sometimes holy mantras and sacred texts are where you find them. Well, enough of that. Let's party! :-)

2/1/09

It's been another eat-everything-in-sight day for KD. I think he's storing up for next week when he starts another cycle of chemo. 

Tomorrow is the dreaded bone marrow biopsy. The point of course is to make sure the cancer is disappearing. It doesn't make it any more fun. I hope it's not an omen that Monday is also Groundhog Day. Now *that* would be an awful day to keep having to relive (If you haven't seen the movie, you absolutely have to!).

We'll probably be at the hospital all day for that. And he'll feel pretty lousy for days after. Tuesday they should start chemo again. Basically all of this coming week is going to kind of suck. So I guess I'm saying he'll need some good thoughts and encouragement sent his way.. and don't nobody stress him out, all right?

Because of the chemo, he might have to go back on his restricted diet if his AGC goes back below 500. I'll keep you posted on that. That means no fresh fruit or veggies; everything pasteurized or cooked or canned or frozen. Nothing from restaurants or delis. Yada yada. 

Not much else to add here. I may be coming down with something and might have to wear a mask when interacting with him. I hope not. Those things are not very stylish. Maybe if they had Hello Kitty ones :-)