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Tuesday update

Where do I start?

Do I start with the headaches that are churning my brain into applesauce? Do I start with the fever I’m chillin’ with? Do I start with the Rays: a source of great joy and greater sadness in one evening? Do I start with the allergic reaction to an antibiotic, which has turned my clothing into an “aggressive interrogation” device? Do I start with the nurse who said I couldn’t get my own snack from the fridge (bought and paid for with a friend’s money), then took three hours to deliver the goods – despite semi-hourly reminders? Do I start with the ache that travels up and down the long bones of my skeleton, caused by drug induced, hyperactive marrow in the middle?

Maybe it’s time for dwelling on the bad to end.

What has been good about today? There was the constant supply of Vicodin which came my way when the nurse got tired of seeing me curled up in a fetal position for most of the morning. There was the constant supply of Benadryl that my doctor approved when he saw me around lunch time. There was the obvious dissing of a doctor, when mid-question, the nurse in the room stuck a thermometer in my mouth. Mind you, this wasn’t one of those high tech devices which finishes before you get the chance to close your mouth. This was an old school, you’re lucky if it’s done in two minutes, thermometer. There was the blessedly patient, caring, helpful, and reassuring nurse I had this afternoon. There was the phone call from a good friend at work, followed almost immediately by a phone call from my sister (the doctor).

There was some medium grade news today which bears mentioning. My white cell count has almost doubled in the last two days (400 to 700). My doctor thinks the fevers and chills will take care of themselves (sort of) once my white cell counts rebound a little further. The bad part is my counts are coming back a little slower than he thought they would, and I’ll be in the hospital until at least Saturday; with no guarantees that it will be anytime shortly thereafter.

Even in this, there’s a silver lining. One of my team of doctors tells me that the low white cell counts following the chemo, combined with the slow comeback, suggest that more of the cancerous cells were killed – which makes full remission more likely, and follow-up treatment (shudder) less.

That’s a big fat, heaping helping of hope.

The Saturday setback

One of the criteria for going home (from the hospital) is being fever free for 48 hours. Two days ago I had a very low grade fever. Personally, I wanted a second opinion on that one, but I was ready to let it go… because it was now two days ago. This evening I developed the full bore fever, complete with chills.

Damn.

What’s wet with this picture?

As you may know, I’m in the hospital. The chemo is done and modern medicine is doing its best to rescue me from cancer’s cure. Therein lies the rub… or more appropriately, the tub. In order to flush out my kidneys I’m on a near constant IV drip of fluids. Further, I’m on a regular diet; strongly encouraged to suck up as much of the wet stuff as I can.

Unfortunately, I am not a man of science fiction. I have no mystical reigns on the laws of physics; able to steer them at my will. Therefore, the capacity of my body to retain fluids is finite. You could hook up an IV directly to my bladder and inflate it like a water balloon… but without constant relief, it’s going to burst forth with a flow that one day will be remembered in song.

This is why I must pay hourly* homage to mankind’s unheralded achievement: indoor plumbing.

*Give or take 50 minutes.

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Not your father’s Friday

In the last 24 hours I’ve had two phone conversations with my children.

Beth hasn’t been sleeping at night and needed another run down of all the drugs I’m taking, how they work, and why they’ll make me better.

Beth is a happy child; everyone usually says so.

So it broke my heart to hear the anxiety in her voice, and not be able to take it away.

Adam has been telling everyone that my wife “is on her way to pick up daddy.” He asked me if I was picking him up after work today.

Adam is a lovable little boy; someone you can come home and just squeeze, and who can sometimes give as good as he gets.

So it broke my heart to tell him no, and not be able to do damn thing for the terrible understanding I heard in his little boy voice.

Right now… perhaps now more than ever, I need a really big squeeze.

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Sucks like an American vacuum plugged into a European power outlet

The Euros run more juice through their sockets, right?

No matter. Fact checking is for sissies (as they say on The Report).

The latest word from the good doctor is “wait,” as in, “we’re going to have to wait before we send you home.”

Here’s a few more words he used: “next,” “week,” “uncomfortable,” and the ever popular “estimating” (when used in conjunction with “uncomfortable”).

I don’t feel it’s appropriate for me to discuss how I’ve been feeling, owing to it’s graphic nature; but I’m perfectly willing to toss around some euphemisms, if that will satisfy any latent curiosity floating around. For example: my food processor has been having problems north and south of the border. What would otherwise be normal deposits at the nearby collection center feel like the battery is somehow leaking into the exhaust. And there’s a wild, half clean animal all wound up and skulking around as if he were chained down in a cage during mating season.

Like everything else, it could all be much worse. Tomorrow I can look forward to tooling around with the Reunion software upgrade I bought this evening.

Here’s to life’s simple pleasures.

The truly good news is that the chemo is done. It hasn’t quite finished having it’s way with my body’s rapidly reproducing cells, but the corner is nigh! Shots of Neupogen have begun, to try to boost the production of my white blood cells (they tell me a count of 200 is low). And, I learned a new word today: Thrush. (Truth be told, I had heard of a bird referred to as a “Thrush.”) In this case, Thrush is a fungual infection in a person’s mouth, made possible due to immunosuppression. There’s another place this fungal infection can attack (in the non-immunosuppressed), but I have a few sensibilities, and I don’t want to discuss it.

So there!

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Going Down

The other day, one of those “other days” which are now relegated to the blur of my defensive mind, I was exceedingly nauseous. I was having chills, my back was spasming, and I wanted relief. The good natured nurse came in to play twenty questions (she lost by the way), and I got her back out the door to fetch me the appropriate pharmaceutical relief. That relief came in the form of two magical pills – swallowed, not implanted. The nurse helpfully suggested that I nibble on some crackers first, so that I wouldn’t vomit up the pills. Unfortunately for me, these were the first saltine crackers I’ve had the occasion to label: damn near uneatable.

Anyway, the pills arrived and I geared up for 20 minutes of war with the reflexive nature of reverse peristalsis. I swallowed the pills and 90 seconds later all hell broke lose, subjectively speaking. In the next five minutes I couldn’t have held down a sleeping dog. It was all coming up until it all came; then for good measure, my body kept trying for another few minutes.

So I’m sitting on the edge of my bed, cradling my vomit pan in a two handed manner suggesting I had recently taken up a far eastern religion, when my nurse returned.

“Well good news, It doesn’t look like you vomited up the pills.”

“…” I replied.

“So we won’t have to take them again.” She added.

“Uuuuhhh,” I replied.

“Is there anything else I can get you right now?”

“Uuuuhh, sheets?” I asked.

“Oh yeah, I can do that.”

So it occurs to me, what the fuck? Twice over in fact.

First, how the hell did I keep down two pills I’d JUST swallowed when I’d barely been able to keep down my lower intestines. And Second, I was dripping in unmentionables… surely the need for clean sheets went without saying. I should have done some follow-up on the pill issue, but fatigue won the day.

Cheryl will tell you it’s another example of my not sticking up for myself, and she may have a point. But sometimes I think I have a pretty keen sense of momentum (the kind referred to in sports and pop-psychology – not as described by Newton), and in this case momentum was SO not on my side this day.

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Sunday Status

I don’t much feel like typing, but I feel even less like talking… so here it is. My apologies to those of you who’ve called and I haven’t answered.

The fever is lingering, but so far the blood cultures have been negative – so it’s increasingly likely the fever is just a side effect of the chemo and not because of some opportunistic infection. My nausea has stuck around… ratcheting up the violence yesterday. My back, which I put out the day before the dreaded ER visit has been an almost constant partner.

So what’s good? The pain medication has taken the edge off, and combined with the nausea medication I’ve been able to sleep through much of this – even if the symptoms haven’t abated. The most significant piece of good news is that the chemo will stop sometime early Tuesday morning.

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Setback

Around 4 a.m. this morning I woke up with nausea, a little dizziness, and a pounding headache. I took a quick check of my temperature, and it was 102 degrees (Fahrenheit… but you probably knew that… naturally ocurring boiling innards is pretty rare). My instructions from the oncologist were to call if I had a fever above 101, and luckily for me this qualified.

It’s now 15 hours later and I have a lovely private room at the local hospital, complete with a wireless hotspot… which made this entry possible.

Everyone entering my room comes in with a mask and gloves, which makes me a little nervous… like I’m some kind of bubble-boy.

This has been a time when I’ve been grateful beyond words for my supportive family. It’s really been the silver lining of this whole episode (if you can put such a lining on unbearable nausea and a head that feels like it’s been used as the ball in a soccer match). Unbearable might be a stretch. It’s not unbearable now… after three doses of Zofran.

You know what’s worst about all of this? It’s not the nausea (although it’s a close second), the fevers or the headaches; it’s that I have to spend the next several days tethered to an IV pole in a hospital. I don’t recall having spent the night in the hospital as a patient (I did it twice when my kids were born, that wasn’t quite the same). But every time I’ve visited someone in the hospital they’ve always looked so pathetic; like staying in the hospital was almost as bad as the illness. Staying in a hospital does something to one’s modesty – that disheveled look only adding to the effect… that look of miserableness.

Now I’m that disheveled hospital patient: ass hanging out of the infamous gown, hair in that perpetual “slept on” state.

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It’s not easy being green

No, this is not an homage to Jim Henson’s famous muppet, although little Kermie was my favorite.

I don’t recall how it happened, but my wife got on Al Gore’s email list, and we’ve had the pleasure of some one-way correspondence ever since. I’m sure we didn’t do anything special to get on the list. The only qualification was probably an address… and we’ve got that covered in spades. But the one-way nature of our exchanges ends today friends. Today I sent a reply.

You see, I am a flawed man. I come before you all today… addicted to ebooks. My Palm is my constant companion, my library in a pocket. Everything from reference materials, to policy documents from work, to favorite fiction, to multiple translations of the Bible (which don’t get nearly as much use as I envisioned they would)… it all travels with me, and is available at a moment’s notice. Have you any idea how handy it is to have the books you’re reading with you ALL the time? Quite simply… it’s damn near nirvana.

Of course, if you’re not a big reader… this is completely lost on you.

Anyway, back to Al. This morning I got his email reminding me that his book was released today. Right away I went to my two favorite ebook retailers (eReader and Fictionwise). Herein lies the problem with the electronic book format… not all publishers/authors have embraced the idea. In fact, some of them are down right hostile. (I think the main concern revolves around copy protection – doesn’t it always?) You guessed it. Al’s new book isn’t available as an ebook.

So I sent a message to Al to let him know about my concerns. He’s a tech savvy guy, right? He’s got a seat on the board at Apple, he saw some of the advantages of the internet before most of our leaders did, and duh… no resources used/wasted printing a physical book… I figure the ebook thing is a no brainer.

Alas, I suspect he doesn’t read all of his own mail. And yet I had to try. Sitting at home hooked up to the chemo drip gives one lots of time to compose harassing emails.

Maybe if I’m going to go to the trouble of harassing someone, I ought to pick a public figure I don’t admire first?

Maybe I shouldn’t do any typing at all on chemo and Compazine.

Here’s something I didn’t know: Compazine used to be used as an anti-psychotic. On the Wikipedia they say it’s 10-20 times more potent than Thorazine.

I can tell you from personal experience… that’s pretty awesome (albeit pretty damn tiring). It’s also a big reason why I’m sitting around goofing on the internet (half awake) rather than logging into the office to do work (I know too well how much trouble I could stir up there).

Buenas noches, luna.

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How do you spell “irritate?”

If my skin were a character on TV, it would have to be Archie Bunker. My skin is so irritable… oh who cares, we’ll just say it’s pretty fracking irritable and move on.

It turns out my skin is particularly irritated by some bandages. “Elementary my dear simpleton,” you may be thinking, “it’s the latex.” Here’s the rub, bub. Several brands of “latex free” raise the welts just as well as the latex laden. So now I find my self tubed and sealed, courtesy of Tegaderm (a clear, moisture resistant barrier to protect you against infection)… and the damn stuff is driving me CRAZY! I’ve got an itch I can’t scratch (lest I pull out the PICC line – which, in laymen’s terms is “a bad idea”), and I think I might sooner filet my forearm than stick another Tegaderm on my epidermis. My only hope is that the oncologist will save me from my adhesive inflicted hell. Surely there’s something else that can shield the insertion point of the PICC line than this infernal piece of 3M crap.

(Normally I wouldn’t have anything bad to say about 3M.)

In the mean time, pardon me while I go insane.