Sunday, June 21, 2009

The Bible says nothing about elves

If I stick my leg out of my bed to the right, I would be able to touch the door to my bathroom. Still, yesterday morning it took all the energy that I had to get to that door. It's probably three movements in total. Getting there was important since everything I ate, or tried to eat, essentially went right through me getting runnier, noisier and more violent as it continued from my stomach on down. I had to make that trip eight times that day. But enough about poop.

Since I last wrote, I've been in pain. The chemo settled in alright. In fact, if any cell grew on my body, the chemo slaughtered it like it was a scene out of the Old Testament. Before even getting to my belly, I would be able to follow the path of any morsel of liquid or solid food stuffs because it laid a passage of needling pain. My tongue felt like someone cut if off, another vague Biblical image I might add. And while I don't have any mouth sores, my mouth is still really, really sore. 

My belly would give me sharp pains throughout the day as a response to not having any blood cells to fight an infectious disease. My feet and hands feel like their grazing the tip of a knife. I would say they feel like someone is pounding stakes into them to continue this biblical theme but that would be overstating it a bit too much even for the sake of continuing a theme.

And boy have I had fun with side effects. I keep getting red all over my body. So it feels like I got sunburn all over. In Houston that would take, ah, a trip from the Pizza Hut to the car in the parking lot. My bald dome is filled with zits ( as a result of a virus) and can drive me nuts with itching. One night a doctor (I'll bet it was really a PA) said that there was nothing to give me besides Benedryl (that all-purpose drug again) and so I spent a night with a wet wash cloth on my head.  

Through the days and nights, I never puked. I've been close even earlier today but a combination of science (nausea drugs) and Michael science (munching on cereal all day even if it hurts to swallow) might have done did the trick.

My time has been spent like this: get out of bed and into a shower about 9 am after not sleeping most of the night; take shower, sometimes sitting; get out of shower and onto a chair for an hour; try to go for a walk around the ward and think about ordering lunch; don't order lunch; go to an "Exercise class" which is basically a class that gets you to move muscles; get back and nap; stay in bed rest of day and night. Now, generally, I would find this routine to be the most satisfying of anything I could possible do only there's that bit of cancer. Cancer can even ruin some good off-time.

On only a few occasions did I just lay and feel miserable. Usually, I tried to keep my mind occupied with kiddie porn and elf sex. Okay, not elf sex all the time. Actually my dad came down and now my beautiful and brave wife is here. Everyone keeps telling me that I'm courageous. She's the hero. She has to be Dad and Mom to two kids, while pregnant, fly to Houston to play Dad and Mom to me, keep the house in order, schedule babysitters and kid routines, fight with insurance companies and assorted medical personnel and oh yeah, keep it all together. That's more hero than most people I've ever known and certainly more admirable than my situation. I'm just sitting here feeling miserable and watching elf sex. 

Right now, the pain is subsiding a bit and my energy is picking up at least enough to write this. As you can guess, I'm probably over the rough stuff.  Even though I'm almost continuously on pain meds now, I'm not as pained when on them. I still can't sleep because now they have me on a new steroid as well as a whole new bucket of pills. We got stuff for my liver, more stuff for my stomach, stuff for my mouth, stuff for my hands and feet. They just bring them in. I swallow. 

Saturday, June 13, 2009

Day -5: Celebrating with the Rolling Stones

One of the most effective weapons in the mighty arsenal of the US Armed Forces isn't a weapon at all. It's music. Every once in a while you'd hear this story about the Army or Marines ready to do battle somewhere and they'd blast music through their loud speakers. They aren't be psychic-ing themselves up. They're playing it for their enemies. 

Don't think it's a Miley Cyrus song either. No, when you're about to commit unbelievable terror on a bunch of strangers with guns, what is the appropriate tunage? From what I heard, it usually has something to do with Ronnie James Dio. A scared Arab fella might have heard a Miley Cyrus song or two or at least one of the millions like it. But he's never heard the horrific noise of a Dio song. Forget "Arab fella". It can scare the crap out of any of us. 

So at about three o'clock today, right at the time when this not-going-outside-the-floor, body-withering, nausea-and-crappiness cocktail thing is starting to get to me, I decide it's time to inflict pain on someone else. Now, the nurses here are very nice. At least that's what I can tell when I understand them. Many are from another country. And while my doctor doesn't really say more than three sentences to me and just the other day was so annoyed at my questions that he literally walked out of the room while I was in mid-sentence, he is saving my life. So they're all out. 

I couldn't go outside to find a stranger. I was left with one choice--the cancer. Yep, the nodes were gonna get it. But I had no Ronnie James Dio. Most of you would consider that a welcome trait, especially if you've ever heard him. I don't think he'll be coming out a Christmas album soon. Some of you (okay, only Glenn), may disagree. So I did the next best thing. I pressed shuffle on the iPod and what would you know, Sympathy for the Devil came up. This was the live version. Enough noise to disturb the cancer especially when you turn it up to eleven, which I did. It was a beautiful moment. Take a little of this. 

Other than that, life here is the same. It's the same because it is as controlled an environment as anyone can create without a revolt from the inmates. A hurricane came through Houston last year. You would think it was sprinkling outside if you were in here. In the meantime, my own body is purposely heading south. At least I'm humming. 

Friday, June 12, 2009

Why sleep?

It's almost 5 am. The Prednisone and constant itching have kept me up all night even despite two Bendryls and a Lunesta. I have another dose of chemo at 5:30 so it looks like I'm up for the day. 

I'll see the sunrise soon although I can't say I'll enjoy it. Even when I'm not getting a blast of chemo, I think sunrises basically suck. If you see one, you've either stayed up way too late or got up way too early. Neither has anything to do with a pleasant feeling. 

Chemoheads see a lot of sunrises, as noted whenever you see the bags under their eyes. If it's not because of the drugs that go in their body, it's because of the thoughts that occupy their mind. I remember staying up all night a few times the first go-round with chemo. It seems like a long time ago but was only less than a year. 

The last time I was up all night was a few months ago after I came home for the weekend. I can't say I can blame this one on any drug. This was purely angst. The first person to get up was McKenna. She was half asleep, her hair was all over the place and she just said, "Daddy." All that angst the now previous night went away with one word. It was worth staying up all night to experience. Some sunrises don't suck. 

I've lost the sense of taste. That's supposed to happen. The tastebuds aren't regenerating any cells. Next I'll be getting mouth sores. At some point after that, they'll feed me through an IV as I won't be able to eat anything.

My wife leaves for home later and I'm on my own until Sunday when my dad arrives. We found out that I can leave the floor but only under certain circumstances. Certain circumstances include going to a Tai Chi class. There really aren't a lot of other certain circumstances. So, as Sher said, I'll get to "work on my center" in the next couple of days just to get away from the monotony of living in my room and floor. The big news around here is a couple of people are getting tested for swine flue. 

Enclosed is a picture of my current home. No bubble. Just a plain old hospital room. The hot chick on the chair is my wife. The light is from yesterday's sun. 

Wednesday, June 10, 2009

My drugs today

Here's a list of what I'm taking on Day -8

A steroid that helps with nausea but keeps you jittery.

A drug that helps with nausea but gives you a headache.

Helps you avoid mouth sores.

Ya know that drug that helps avoid mouth sores? It gives you rashes over the rest of your body. This drug helps get rid of the rashes.

Chemo drug. Kills cancer.

Chemo drug. Kills cancer.

I guess there is a slight chance of getting a seizure with chemo. Five of these pills keeps this from happening.

Keeps you from getting a sore mouth or sore gut. Bad for the liver. Like that matters at this point.

Coats the tummy.

Because the side effects from the other drugs can cause you to not be in the mood for bed, there is an option to take a sleeping pill. Sometimes I'll take it. Sometimes I won't. Still don't know about tonight. 

The funny part is, they don't want you taking an aspirin. All these drugs and you can't even take an aspirin. 

Fun in the dead of night

It's just about 3 am. I hear them preparing the chemo outside my room right now. They're supposed to start at 3:30 but may be running a little ahead. That's fine with me. Can't sleep anyway. 

The first IV bag is the anti nausea drug. The second bag is a steroid. The third is my first high dose of chemo, the lovely gemcitabine. I won't sleep for the night. The steroid will keep me up the rest of the way. 

It's now me versus the sickness. Six months of getting to this point, to able to have a chance to live. I didn't know it would come at 3:30 in the morning with a body that's beat and a mind that's dead tired. Ground control. This is Major Tom.

Tuesday, June 9, 2009

The calm before the storm. The boring calm.

I'm on Day -9. It's really boring and it's reminding me of prison, besides the butt raping and being stabbed with a shank. The room is as small as a cell block. You aren't allowed to go anywhere further than your own floor. There is no hard labor or guys asking you to be their bitch, but you do have chemo, which is worse. 

I'm even shackled. I'm attached to an IV pole and will be for three weeks. It makes doing anything a pain. They say you should give the IV pole a name because it's with you so much. I'm calling him Bill. He doesn't really say much. He's not spectacular. He's just sort of there. Sort of like a Bill (the exception would be Bill Hughes, of course). 

And like the overcrowded prison system, the stem cell transplant system is bursting. They put me on an overflow floor which is supposed to be used for gynecology radiology. But it's being invaded by stem cell transplant patients. Speaking of gynecology radiology, any single fellas out there want to me to find them a good lady who's been through a rough patch, I can do that. 

The pokie is scariest at night. So is this. Why, I already had a run-in with three nurses and two needles. Nobody could find a vein. Chemo makes the veins really hard and bashful. It takes a real pro to get a needle in. That's something that's universal with cancer patients and we all enjoy talking about our experiences like prison mates talk about theirs. It hurts like a motha. 

So here I am. Doing time. Working on the railroad. Listening to some Johnny Cash. Enclosed is a picture of one of the greatest prison movies of all time, the Shawshank Redemption. It's a close call between that and Papillon. 

Thursday, June 4, 2009

Now I'm a nuclear guinea pig.

Assuming everything goes right, I'll be getting radiation treatment starting around July 17th and continuing through mid-August. That's what I learned yesterday in between taking tests. It means almost the whole summer will be spent down here in scenic Houston. Ya know, it's so disgustingly hot already, I don't see the point in having a radiation wing at all inside. They should just tell people to take a walk down to the Taco Bell. 

Unfortunately, this timing could cause me to miss the birth of my third child. I guess I should be more upset about it but I figure it would be better that I take measures to stay alive for the rest of her life than to make it to her first couple of days. Plus, by her teenage years, she's going to hate me and this gives her a reason right off the bat. 

Until this point, my wife has only vaguely considered the idea of a stand-in for the birth. Obviously now we're going to have to look at that more seriously. I'm going to take the opportunity here to guess on some criteria she'll be looking for. The person should not be squeamish, know when to make fun of my wife for comedic purposes and when to shut up, promise not to pull any lamaze crap and should not show up drunk or on drugs (although leaving drunk or on drugs is acceptable). 

Today I took one last scan and met with the stem cell doctor. The good news is my scans show that the cancer is barely kicking, even in it's death-throws. The bad news is it's still there. Although my neck is still killing me, nothing cancerous showed up on the scans and I do as the docs do--trust the scans.

Treatment officially starts tomorrow. I'll be getting three hours of a drug that keeps me from getting mouth sores. Apparently throat and mouth sores are one of the biggest problems with high dose chemo. It's not the nausea. My doc says nausea doesn't increase with higher doses of drugs. It stays the same. Once again, I said apparently. I told him that I get pretty nauseous and then curled up into a ball and hid in the corner, mumbling how precious I was. Ironically, this drug, the one that keeps you from getting too many mouth sores, makes you nauseous. I can't figure this thing out at all. 

On Sunday I'll be admitted into the hospital, hopefully beginning a three week stint as Bubble Boy. The blogs may be getting even more boring than this one as my brain will be scrambled. I'd like my wife, dad or sister to fill in but I'm not sure if they will be able to understand the high-tech world of blogging.

Enclosed is a picture of the drugs that I use regularly. The collection will be getting bigger once the stem cell transplant process starts. This is just what I have before. 


Tuesday, June 2, 2009

I'm a guinea pig

MD Anderson has different plans for me. I am to enter a clinical trial this weekend. Because my particular lymphoma has a tendency to come back and be nastier even after a stem cell transplant, the doc decided it might be more beneficial to enter me into a trial that included higher doses of a different chemo drug. It's still a stem cell transplant. The difference is in the drugs and the dosage amount. I'll be in the hospital for almost all of June. 

I got lucky. The other patients in the trial received higher doses and went through a lot more pain. They even stopped the trial to reevaluate things. I'm getting a lower dose, although still high enough to do some ugly.

This is, at first, quite alarming. It can remind anyone just how bad this cancer is and in some ways, how dire the situation is. After all, you gotta be pretty sick if the doc thinks you're better off in an experiment. But it also is reassuring that I'm at the right place. They're trying to give me better odds. It may be tougher, riskier and more painful, but I'll take it. This is assuming, however, that I pass all the tests. 

The first one was today.  The planned bone marrow aspiration turned into a double bone marrow aspiration and then a double biopsy. They stuck a needle into the bone in my hip, sucked out the marrow and then chipped off part of the bone for the biopsy part. Then they went to my other side and repeated the process.  I mixed in hairy butt jokes with a liberal use of naughty adjectives to get through it. Instead of getting a sticker or sucker afterwards, they showed me the bone chips and told me not to take a shower or bath for two days. 

Tomorrow I go for a bunch of other tests: PET scan, lung test, heart test. I'm in the middle of a protein-only diet tonight.  No carbs at all. No sugars. Just steak and fat free jello. 

My neck is worse. Now the nodes under my chin are enlarged. That may not be bad as it could just mean I have a cold. The PET scan will tell but I won't know for a couple of days, unless the tech says something like, "Holy crap. Look at those nodes!" Then I'll know. 

Enclosed is a picture of Alice from the Brady Bunch. The answer to Sara's question, "Which episode did Alice hurt her back?" is, quite simply, an easy one. Amateurish if I might say so. That would be the Hawaiian episode. She threw out her back because she was doing the hula. Sara, a better question would have been, "Vincent Price appeared on that episode. Name at least three other stars to make cameo appearances in Brady history." A hint for one is he got really drunk on national television last year. 

Monday, June 1, 2009

Too tired to write full sentences

Bad day today. Neck is really messing with me. Very sore. The muscles are twisted. Now my throat is sore too. Every time I feel my sore neck, I worry about my sore neck. And that's all the time because it's always sore. Doesn't bode too well for the stem cell transplant if something is still growing somewhere inside there. 

Face a bone marrow "aspiration" tomorrow, which is where they stick a needle down into your hip and then suck the marrow out. Very painful and mentally tough to get through. Have to outlast something similar every day through Saturday. Gotta find it. 

Found out someone else on my Hodge message board died last week. He helped me out when I had a couple of questions. Very nice guy. Only a couple of months ago he seemed okay. Not a good day when you find others with your disease go down so quickly. 

My dog Nala came to the back door this morning with a dead bird in her mouth. She then ran over to some tree bark and buried it. A little later, she dug it up and then buried it again. I feel like that bird. I hope the monster is not in my neck.