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I’m having a bad time right now. I feel lousy. I want to be lying down. I want to be sleeping. But I can’t. Whenever I lie down to try to rest and get some sleep, all that happens is I toss and turn every few seconds to another position, which does as little good as the position before.
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| eBook author John-Michael Battaglia with venous catheter installed prior to bone marrow stem-cell transplant at Roswell Park Cancer Institute in Buffalo, NY in August 2012. |
My mind seems like it is fighting with my body.
My body says: "Let me rest, please. I’ve got a sore throat. I’ve been sneezing and sniffling today. I’m not hungry. Anything you stuff in me today turns to black liquid. I had full diarrhea three times today. So, pull-ezze, just let me lie down and rest. I don’t want things to get any worse."
But my brain can’t rest. It can’t shut down. It’s irritated with the body. It says, “No, we must get up. We must work on developing the website.”
But the body says: “Oh, give it a rest already, can’t you? You know you can’t even think straight right now.”
And my brain knows that that is true. It knows that it has to decide on which theme to pick for the overall look and feel of the website. It has to fit a banner at the top so that is conceptual with my story and with cancer and which make the pages look distinctive. My brain also has to decide on how to convert the pages from the Microsoft Word document where I created them (after importing much of the text from emails which I wrote at the time). It then has to labor on re-formatting those pages in HTML inside RapidWeaving, a great web design program in which I am still a newbie training myself to be a master, so that I can present the pages of the eBook in an attractive, yet easy-to-access format on the Internet.
So many questions about the design of the website have yet to answered, then implemented, before the whole thing is ready to be presented to the general public. My brain is working overtime to figure out all the details, while my body says: "Who the hell is paying you to work overtime?" it challenges. "Hell, who the hell is paying you to do anything, for that matter? Hah!"
Bodies can be so mean when they're hungry but their food tastes like metallic junk, or when they don't get enough baby sleep, or when they're not having proper bowel movements. They can be such irritating nags. And a body that argues with a brain as if that head is not connected to the rest of the body is the worst nag of all.
The brain, in self-defense, tries to ignore the body as if it is not connected to every little complaint that originates from down below and tries to get its attention. The brain thinks it has bigger fish to fry: its current project.
Should I present the eBook content only as one long PDF document?, wonders the brain. That would be the easiest on me, it thinks. Much less work, too. Or, should I present the eBook as individual chapters in separate PDF files, it ponders? Or, should I present the eBook, not as individual PDF files, but as individual HTML pages that appear as normal website pages to my visitors? Hmmm! Lots of food for thought there.
Doing that would not be a lot more work, but it would also require implementing a navigation scheme in a side bar. That's doable. But what RapidWeaver look-and-feel theme can best accommodate such an element cleanly and in a way that integrates aesthetically and functionally with the vision I have for the website as a whole, wonders the brain? But it has no immediate answer, because it not has thoroughly studied all the strengths and weaknesses of the themes available in the package I bought several months ago from a small RapidWeaver theme developer in England, called ThemeFlood, when I was researching the market for the most suitable set of RapidWeaver templates. Now I must choose the right one out of the dozen or so I bought that works both functionally and aesthetically to do what I want it to do.
With that thought written on a mental post-it and stuck on the rapidly diminishing set of neurons designated as the vastly overcrowded "Things to-do WhiteBoard," the brain moves fleetingly to address a related topic: "In addition to presenting then eBook as one PDF file, or as several individual PDF files, or as individual web pages listed in a Table of Contents and in a SideBar, should I also present the eBook in an animated, page-flipping form?"
It would look so cool to see two pages displayed at a time, with a page crease in the middle, then to see the edges of the page curl up and over as you read the content. I waited patiently for over six months until the appropriate software came along. At last, it was offered at a deep discount. So, I bought it, I tested it out over the past two week, and I found out that it works great.
"So, why not offer that option to my readers?," ponders my brain, forever seeking perfection, forever seeking to please, to be appreciated, to be useful, even when thrust into the worst of circumstances for no good reason that medical science—despite all its wonderful advances—can yet fathom.
But should I offer the page-flipping animation format in addition to the regular, static PDF format? Or all by itself? It would be extra work to offer that feature. Especially if, like the PDF files, I offered the page-flipping option not merely as a whole book but also in individually selected chapters. Sure, it would be extra work for me, but it would give me readers yet another way in which to view the pages of my eBook. And it would be classy! So cool!
“Aw, come to bed, already,” says the body, monitoring all the traffic going on in the only ways it knows how: tossing and turning restlessly, fluctuations in heart rate and blood pressure, flatulence. “You think too damn much! You’re giving me a headache.”
“But I am in bed, you lazy body,” says my brain. “That’s the problem right now, isn’t it? I want to work. I’m just buzzing right along. And all you want to do is sleep.”
“What do you mean I want to sleep all the time?" counters the body, offended. With that damn steroid you take to get that buzz, I can’t get any sleep any of the time. I have to wait until your eyes get so dry that they droop shut, begging to be closed. I have to wait until your brain gets so fogged up that you can’t remember the last fifteen minutes of the movie you were watching because it dozed off. Or, if you’re sitting at that damn computer working on who knows what, I have to wait until your head falls down into your chest so that your dense brain gets the hint that it better haul your sleepy ass into bed to get some sleep. So, don’t accuse me of wanting to sleep all of the time. Some of the time would be just great, thank you very much.”
“Oh, stop making such a big deal of it,” shouts the brain, hoping to shut up the lazy body.
“Big deal, you say? Why you ungrateful pin-head. I bet that you don’t even have a clue as to when you slept last and for how long. I can only take so much awake time, you know, before I break down and get sick. Then you’ll hear about it! I'll give you a headache that migraine sufferers would be only too happy to have instead of what they usually get.”
“What are you complaining about now?” counters the brain. “After all, didn’t I create that Excel spreadsheet this week so that I could track the hours when I sleep? I've got the days and hours all mapped out, and I just fill in the hours I slept so that I can see what my sleep pattern is like.”
“Sure. Finally. After I pestered you into at least making notes of when you sleeping and when you were not, so that you didn’t condemn me to living in a prison of sleep deprivation in my own home,” asserts the body. “Even so, I bet that you forgot to make your entries and you got lost into some sleepless time warp again.”
“Did not,” declares the brain.
“Did so,” challenges the body.
“Did not.”
“Did so. Prove it. Go check, idiot. Afraid?”
The brain cannot stand all this bickering. It’s so unproductive. So, to silence the body, it opens up the newly created sleep log it created as an Excel spreadsheet.
“OK, smarty,” taunts the body. “What does it say?”
“It says that I got five hours yesterday and that we’ve only been up for 21 hours straight so far,” answers the brain. “Not so bad.”
“Twenty-one hours and counting! Not so bad,” you say. “Let’s go to bed. Let’s go to sleep! Let's not have more of those 40 to 55 hour awake-a-thons, shall we?"
“I’m trying. Can’t you see that I’m trying?" pleads the brain. "Don’t I lie down with you? Don’t I try to be nice to you? Don’t I try to think calm, soothing thoughts?”
“That’s the whole problem, you moron,” yells the body, frustrated beyond all endurance. “You’re still thinking. Stop thinking, and let me take over and do all the repair work I need to do when you’re not in charge.”
Just then the body sneezes violently three times, and its nose starts to sniffle.
“There! Just look at what you made me do! I’m getting all stressed out, and I’m throwing a sneezing fit to get your undivided attention. Just try and work with that going on.”
“All right already. Let’s go back in the bed and see if we can get some sleep,” the brain capitulates. “But you know damn well that I can’t guarantee anything. I’m not in control here.”
“Well, I’m not in control here either,” acknowledges the body. “That’s our problem. The drugs are in control now.”
“Right. But if we don’t take the drugs…” offers the brain.
“...then the cancer cells are in control,” acknowledges the body. “I know. I know. You think I'm stupid. I'm smarter than you are, dumbbell in ways you can't even imagine. So, I do know that we can’t let that happen.”
“No, not just yet," agrees the brain. "But it may happen. Eventually..”
“Why do you say may," taunts the body? "Are you in denial?"
“No, of course not,” insists the brain.
“The new doctor we met on Monday said that we did not get as much benefit from the stem-cell transplant as other people in their clinical studies. Only one year. Statistically speaking," concludes the body, "we fall at the low end of the curve."
“I know that. I’m not stupid either,” said the brain.
“You asked her what it all meant, and she said that a second stem-cell transplant would not be warranted in our case, because statistically speaking, we would only get half of the benefits of the first one. Hardly worth it, when you remember the hell we had to go through the first time around. That wasn’t fun for me, you know,” complains the body.
“Nor for me,” agreed the brain.
“So why do you say may?” challenges the body. “Why do say that someday the cancer cells may eventually take control if we don’t take our drugs?”
“Because I don’t want to think in terms of will, that’s why. I know that they will, but I don’t let myself think of it.”
“So, you think that if you keep busy and you’re productive in this, our final hurrah, and as long as you don’t think in terms of cancer cells as a force beyond our control that will take over, that somehow they may not?” wonders the body.
“Something like that,” says the brain. “I don’t think that we should just give up, give over, and be passive until there is nothing left to do. That's no way to live, cancer or no cancer."
“But you brought that up to the doctor this week, didn’t you?” asks the body. “You said that it seemed like a chess game in which you knew that the cancer cells would eventually win because they are smarter than all the other cells and all the drugs in the medical arsenal, so there’s going to come a time when she says: 'Sorry, we tried everything. There’s nothing more we can do.' "
“You heard that?”
“Of course, I heard that, too!” retorted the body. “Whose legs do you think got you to the clinic in the first place, dummy? You asked her what it all meant that we got diagnosed with an aggressive form of this cancer and that the stem cell only put it in remission for one year. It was a good question. I was proud of you for pushing her on stuff like that.”
“And she said that maybe, in two to five years, we’d be having that conversation,” added the brain.
“Right. OK, so it is going to happen. Now that it may happen, but it will happen, right?”
“Right,” concurred the brain.
“OK, then” concluded the body. “So let's do a carpe diem from here on out. Let's just seize the day and be grateful for the time remaining. Let's just be thankful that it’s not going to happen tonight. That means that you still have a reasonably good amount of time to get some of your pet projects done before it’s finally time to call this movie that is us a wrap. Right. This movie has to end sometime. Somehow.”
“That’s true,” agreed the brain.
“So, you don’t have to get everything done tonight. You still have time.”
“Not that much time.”
“Nobody ever has that much time. It’s a natural law.”
“I can’t argue with that,” concurred the brain.
“OK, then. So, can’t we at least try to get to sleep. All this arguing about it is just wearing me out.”
“It’s just wearing me out, too. You can be too depressing at times.”
“Well, I don't mean to be. I'm just giving us a reality check now and then. It's an ugly job, but someone has to do it."
"I understand," mumbled the brain.
"I don’t want to fight with you all the time,” said the body.
“And I don’t want to fight with you either,” said the brain
“So, can we go lie down together in peace and harmony to see if we can get some sleep? I’d really like to see if we can insert some regularity in our sleeping pattern. It could be good for our health, you know.”
“I agree. In principle. It’s just that I am not in control.”
“Forget about control. Forget about thinking. Let’s just try to relax. If the steroid turns out to more powerful then we are …”
“... like it was the first time we went on the Dexamethasone roller coaster ride?” proffers the brain.
“Yes, I remember that ride, too. It not only kept us up for days at a time, but it also clouded over my the natural lenses in my eyes, requiring cataract surgeries,” recalls the body. “But we have to take that ride, no matter how high, or how low, it takes us, in order to work synergistically with those other two buddies on the anti-cancer patrol team, to knock out the cancer cells. If we don’t, then…”
“... then we’re doomed to check out earlier than if we don’t take it,” finishes the brain. “Yes, I understand all that. It’s part of the chess game strategy. We put the good poisons in our body to kill the bad poisons that are killing us, while we hope that the good poisons don’t make us so miserable…”
“… that we have to fight with each other all the time…” says the body.
“… to the point where the good poisons are worse than, or just as bad, as the bad poisons. Right. That’s our dilemma,” concludes the brain. "That's the dilemma of all modern medicine. We're not exactly the same barbarians as those who bled the bad humors out of people. These days, we send a whole new kind of bad humors into the body to force the really nasty humors to stop telling all their bad jokes. And, as long as the body—you—can tolerate all the lousy jokes going on inside without wrenching too horribly or too often, the show can continue."
"Then we get the hook," interjected the body.
"Precisely," agreed the brain. "Then we exit the stage. No more strutting around. No more dialogue. No more soliloquies. Curtain down. Show's over."
“Right. But enough melodramatic metaphors for one night, Shakespeare. Are you ready now?” asks the body.
“For what?” wonders the brain.
“For sleep, you dope.”
“OK, I’ll try. I really will.”
“Fine. That’s all I ask. Just try to relax and let me sleep with you. And you with me.”
So, around 4:30 AM, the brain allows the body to lead it away from the computer to the bed, where they may toss and turn, and not get any real sleep, but at least so that they can try to accommodate themselves to the drugs which are more powerful than they are, and which they are taking in order to extend their lives as far as possible.
While the end-game strategy seems statistically certain within a range of a few years one way or another, it’s the day-to-day journey of the mid-game which is all important right now.
The doctors may move the pieces around the board that is my body and my mind, but the chess game with cancer can only be enjoyed if the playing of it does not cause more chaos in the body and mind that the cancer cells will eventually do by wiping out the board altogether. Ultimately, the game is over when it no longer fun playing it.
Fortunately, we are not there yet, but every one in a while, when we toss and turn in the dark where no one can hear our growls and our frustrations, we get inklings of the battle waging within us. We can’t quite tell the positions of the pieces. We can't quite discern how many pawns or power pieces are left to be played. The only thing we do know, is that this is one chess game that will not end in a stalemate. Even so, we will draw this game out for as long as humanly possible.
