Wednesday, December 31, 2003

OK, I went in to drop off the urine bucket, and they drew about six vials of blood from me. I am looking forward to hopefully a week or more of not being poked. The MRI sure seems a lot less daunting now.

This is Spinal Tap

This one makes my stomach churn just looking at it. It's a photo of my spinal tap. Here is a close-up. Sheesh. It may be a minor procedure but you know, they stick a needle into your spine and draw out fluid. And that ain't natural! They bid you lie down all the rest of the day and not get up till the next morning. And this I did, but my back still aches and is sore and I have this dreadful feeling that I was punctured in the spine. It's kind of viscerally unacceptable when that needle slides into your spine. And like all the other procedures you are supposed to remain calm and hold still. In my case a dull but deep ache shot through my pelvis and down my right leg. The doctor said I was bound to feel something but it is unlikely any nerves were damaged. "It's like sticking a fork into a pile of spaghetti," he said, "You're unlikely to sever any of the noodles."


OK now here is the part that is going to make some of you question my doctor's ability. I tell you in advance that I am very good at standing up for myself, and very capable of being critical of other people and procedures. You all know this. It's a "strength" that is a fault. So believe me, if I had any reservations about this doctor I would act on them. But at this point he makes me feel very comfortable, I like him, and I can tell he is bright, interested, and knowledgeable.

Anyway, so the fun part of the story is that after they stuck me, and the fluid started coming out, I could feel the drops on my back, running down my crack and into my underwear. I guess when it comes to medical procedures, the unexpected upsets me, and this is the last thing in the world I expected. To my mind, spinal fluid is more precious than blood, more precious even than breast milk. And here it was, running into my underwear! But I remained calm: "Doc!" I said, in a restrained but urgent voice, "it's dripping down my ass!" He grabbed a collection tube and said it was OK, that he would still be able to get his sample. I thought: I know you'll get your sample, I just don't think Calvin Klein should be getting a sample. So then the office assistant took the picture. All that red stuff is just iodine, but in looking like horrific dried blood, it gives you a sense of my mental picture of the procedure. The doc said that in 25 years, no one had wanted a picture taken of them having this procedure. He wants me to send it to him so that he can use it in his literature, the stuff that is supposed to calm patients. I don't think anyone is going to be calmed by this picture. And he should crop out the iodine, I think, because it looks like blood. I told him that, and he said to just send the whole picture. He is a visual artist, and has some nice images that he made, hanging on the wall of his waiting room. So I decided to trust him to crop and present the image as he sees fit.

Then I felt some more drops going down into my underwear! He had filled up the one vial and needed to get another!

I know, I know, I know: You or I, or anyone else, would have had those two vials ready, so that no drop was wasted. I'm prepared to forgive him though. Maybe he was just dripping water down my spine as a practical joke. Something to tell his buddies about.

Anyway, he says the fluid was clear, not greenish or tinged with blood. Which is good. They will test it for a bunch of stuff including MS. Results are expected in less than two weeks.

Then he had to draw some blood, and when he missed the vein in the one arm he apologized and said that if he missed again, he would quit for the day and have a phlebotomist do it. He says he doesn't like torturing people. See, he is a cool doctor.

My wife has been putting up with a huge extra burden of child care, and yesterday and today she had to do everything I usually do (like cook breakfast). Yesterday while I lay flat in bed, a very nice friend of ours came by in the afternoon to help out my dear wife. And she gave me a Far Side book! Yay!

Monday, December 29, 2003

Here is one of the images from the MRI. It's a bit fuzzy because I took the picture with my digital camera and maybe my hands were shaking? I don't claim that it shows the evidence of the Mystery Condition, I just chose it because it shows the cool staring eyeballs. It's weird looking at your own brain. And sinuses. Quite frankly it looks like something I might eat for lunch. Tasty fresh meat.
OK, the EEG was funny. They had this old machine where the needles scribble onto paper. They put the wires on your head and whenever you swallow or yawn the needles go wild. They flash a strobe light in your eyes. Then ask you to hyperventilate. The whole thing was so silly I started to laugh. The technician lady told me to stop.

So far I have blown it as an MRI subject and as an EEG subject. I hope I don't faint when they draw my blood.

The neurologist just called and said that there is good news: my EEG output "was as normal as it gets." This implies no Bovine Spongiform Encephalopathy (I typed that from memory), also known as BSE, or for some of you from New Jersey: "Mad Cow Disease." I was going to ask him about this, kind of as a joke, but he had already thought of it. He said BSE tears up the grey matter. That's the stuff that makes you human, smart, and in my case, sexy. He says that whatever is effecting me is not ripping out the grey matter, or the EEG would have shown it. Good news.

As for stroke, he says that this shows up in the MRI in a "typical vascular distribution," meaning, for those of you from New Jersey, it would have clustered along the arteries and veins. And it ain't.

So now he is thinking that it might be MS. MS is, from what little I know, a royal pain, but it does leave your personality and mind intact. And it comes with a normal lifespan.

But we shall see.

Spinal tap tomorrow. The doctor says I will have to spend the day flat on my back. Except to get up and go pee. And with my trusty plastic bottle by my side, that won't be far.
The Spinal Tap appointment was for 10 AM but I should have asked them to push it "all the way up to eleven." Didn't. So I got there, and they had decided to reschedule it to tomorrow. We are getting a cold sloppy rain here, and I suspect that my doctor extended his snowboarding vacation at Tahoe. He has every right to, but his very bright and able assistant swears he in is town. As for the spinal tap, they make you lie on your back for an hour afterwards, just so you don't drain your brain. Then there are conflicting reports of whether you must lie on your back all day or not. I'll find out. But all was not for naught. I got a cool plastic jug that I get to collect my pee in tomorrow. I got an appointment for them to suck blood out of me Wednesday. I got a copy of the MRI report. It says that the scan with the contrasting agent shows no difference from the one without it. I am told my neurologist will be going down to the MRI lab in person and looking at the images on the big computer monitors there. That will give him a more detailed view. The films I have seen look like a series of X-Rays, but in neat slices.

The written report says that both scans show some problems in the right hemisphere, and the same areas effected, in a lesser way, on the left hemisphere. I get the impression that it is not all on the surface of the cortex:

Abnormal increased FLAIR signal is identified of the right internal capsule on the right extending superiorly to involve the white matter of the right parietal region. A lesser degree of abnormal FLAIR signal is also identified on the left also within the parietal region. There is no evidence of mass effect, midline shift or extra-axial fluid collection. The appearance of this abnormal increased signal is unusual. Differential diagnostic considerations include ischemia and demyelination though the appearance is not typical for multiple sclerosis. Vasculitis is also a consideration. A neoplastic process is considered less likely.

Ischemia means inadequate blood supply. Vasculitis is swollen blood vessels. Demyelination is when the insulation around your nerve cells goes away. Neoplastic refers to cancer.

The fact that it looks less likely is reassuring right there. A lot of you seem a lot more worried about this than I am. Some of you are losing sleep. Don't worry so much. Whatever this is, it seems unlikely to kill me right away (knock on wood). Let's wait until the lab results come in. Maybe it will be some kind of heart disease or something treatable. I actually feel pretty chipper right now. Which isn't to say that it is all so very easy. Here is how they described my freaked-out, claustrophobic panic attack (when they attempted the 2nd MRI on Christmas Eve):

The patient ... could not tolerate the procedure secondary to anxiety.

I just got a call saying they are going to do an EEG today at 3 PM. That means they are going to look at the activity in my brain. Those poor, helpless people. I must warn them, whatever happens, not to hook the EEG output up to the sound system.
Your Home Test Kit For Incipient Doom:

1. Wiggle the fingers on your right hand as fast as you can. Wiggle the fingers on your left hand as fast as you can. Notice a difference?

2. Stand on your left foot and shake your right foot as fast as you can, until the shoelaces go clackclackclack! Stand on your right foot and shake the left foot as fast as you can. Notice a difference? Moan out of the left side of your mouth.

3. Take off your shoes. Wiggle your right toes as fast as you can. Take off all your clothes. Take a picture and mail it to the local District Attorney. Wiggle your left toes as fast as you can. Notice a difference? Mutter "oh shit" out of the right side of your mouth.

4. Pick up a newspaper, or read the news on the internet. Notice any spasms, or sudden involuntary cursing? Sit in your car and listen to AM talk radio for 24 hours. Use hand signals to alert your family to any temporary psychohysterical total deafness or blindness.

Sunday, December 28, 2003

My sprint used to have two gears: (1) fast, and a wild, loose sort of (2) you-ain't-never-gonna-match-this. Today, as I was completing my short, mellow affirmation jog around the block, I decided to try the sprint. To my satisfaction, I could manage gear #1 or something close to it. But I could tell that the left leg would not be able to engage at gear #2. Well, I intend to fix that, at some point. I thank the various among you for the crude and irreverent emails you have sent. I like the laughs.

Saturday, December 27, 2003

In ideal parenting, mom and dad split the duties 60-60. But since mom is the only one with the mammaries and if there is a nursing baby, it's at least 70-60. And now ladies, don't pile on me, because I know there can be other factors and syndromes and dag-nabbed worthless piles of man which make it seem more like 150-10. But for the last week around this house it has definitely been 90-20. I would like to thank my lovely and rather strong wife for not only putting up with lazy distracted dad but also for going through the same stress I am going through and actually functioning. My plan is to get back in the ring. As soon as today actually, when I played with the bambinos while the lady napped. The baby has a cold and has been waking up the lady several times during the night. With my digital camera, I took some pictures of the films from the second MRI. I may put a link to them into this blog. When I get around to it. I will just say this: The face is an area where brains and eyes and noses and sinuses all come together in one big mess. Amazing that any of that stuff works.
Life seems pretty normal until you try to jiggle your leg really fast. How many of you can kick yourself in the butt with your own foot?

Friday, December 26, 2003

So I was heading out the door for another affirmation jog around the block today, cast off a departing comment over my shoulder, must have blinked. Walked into the edge of the door. Ouch! Punched in the nose, tiny 1/8-inch cut. Spot of blood. No big deal. But, dang! How often do you do that? Like, for me, never. And it was the left foot that was out front, and the left arm that had hold of the door handle. Is this the fault of the Mystery Condition? Or just stress? Narcissism? Hypochondira? Did anyone see the movie Brazil? I feel like that lady who has the facelift meltdown. Am I just imagining things? Why do I have so many typos (which you don't see because I have corrected them)? Did anyone else read Flowers for Algernon? Just subtract out the genius part and is that going to me be? The answer must be: No, Mr. Hell, you are just imagining things. You had a rough week. Anybody can walk into a door.
We had a good Christmas with family. I went for an affirmation jog around the block in the morning before we hit the road. I napped a little but my brother in law was like a napping Jabba the Hut. The guy should have his own three-letter designation, he is an airport. Today I had the second MRI. I have claustrophobia. I got through the first MRI OK, on Wednesday, though it was a bit tense. They were supposed to give me an injection of contrast agent Wednesday, but they forgot. When my neurologist sent me back for a second MRI the same day, I freaked out, and could not do the MRI. As my friend John said, "You used up all your Chi on the first one." Today I also started to freak, hyperventilate and like that, but what made it OK was I determined when they slid me into the machine. I went to my calm place and then told them to slide me in. After that it was quite relaxing. I was trying to decide whether to lie to them and tell them I saw a piece of obscene graphitti inside their precious machine. Then I had to stop myself from laughing, because you are not supposed to move or jiggle while you are in there. The MRI makes a lot of loud mechanical pulsing and buzzing noises. It sounded like house techno music. My conscious awareness of the physical symptoms is only a week old, so I can't tell yet if they are getting worse or better. I do know that every time I have a slip of the tongue or a failure of logic, I chalk it up to the Mystery Condition. But that's bogus, because it may not be the Mystery Condition so much as that I am a spaced-out, scatterbrained freak, as you all know. The plan is that on Monday they will do a Spinal Tap on me, gather some of the spinal-cerebral fluid, and run tests on it. If we are lucky, it turns out to be nothing more than a bacterial infection. I sent a bunch of you an email with the URL to this blog, and I appreciate all your kind responses. Regardless of the Mystery Condition, I have thought for a while that I need to reconnect with my friends and pals around the world. This is as good an excuse as any, and thanks to you all.

Thursday, December 25, 2003

I woke up this morning thinking: I didn't include the URL in the email! I also did that yesterday to another pal regarding a different URL. I also cooked a spoon in the microwave yesterday by oversight but I think that was just stress. Then I was having all these weird thoughts when falling asleep, and I thought: Don't panic, you're supposed to have weird thoughts as you fall asleep, they're fun.

The night before last, before the MRI, I had a dream that a buddy was telling me about a guy he knew who was having the same motor control problems as me, and that guy couldn't figure it out, but as soon as he changed the date format in his brain, everything was OK. I was asleep at the time but I recall thinking that I didn't know how to change a human's date format, but in the morning I should research it. I think the ideas was to leave off the HH:MM:SS fields. No offense to those of you in Hawaii but this sounds kind of like living on Aloha Time. I'll give it a try.

Wednesday, December 24, 2003

So the MRI today shows there is something on my brain that is not supposed to be there. The doctor thinks it is not a tumor. That would be good news. The thing is on the cortex (the outer layer), and it is in the motor region, which controls the movement of the limbs. Since it is on the right hemisphere, my left arm and leg are the ones that are acting funny. Lazy. Tingly. I have noticed myself stuttering, using the wrong word sometimes (broccoli instead of ravioli), slurring words, and 'mix-mashing' syllables ... or just not remembering the word I need. I counted this up to getting older and having two small children. The doctor says that the thing on my brain is close to the speech center, and that I have some other little thingies on the other hemisphere that are right in the middle of the speech center. So now I have an excuse for everything. I have an excuse for why I go to the store, find and verify the correct item that my wife sent me for, and still come back with the wrong thing. I have an excuse. My wife may wish she could get such an excuse.

If you are reading this blog you are probably a friend to whom I sent the URL by way of explaining what is going on with me. I don't want you to freak out. This whole thing could well turn out to be something simple and easy to treat. Maybe Lyme disease. Whatever. I don't know. I just thought that I would start this blog so that I could put down my impressions as I went along. I am hoping the story will be about some worry, followed by a big relief.

My wife and son just came back from a neighbor's house. They were dropping off gingerbread cookies. The neighbor's grown son was killed in an auto accident a couple of weeks ago. We usually see our neighbor and talk to her every week. But recently we wondered why she seemed to be avoiding us.

Which just goes to show you. As long as you are alive and have someone to complain to, you ain't bad off. I am alive and I am complaining about a mystery spot on my brain, and lazy limbs. I know how lucky I am. You are lucky too.

A note to other readers: You may not have been invited but you are still welcome here. I made it public so that anyone could read it. Total strangers are welcome. Invited friends are welcome. But of those invited friends, I ask you to ask me before you out me as the blog author, or share the blog with other people who already know me.
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