h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I'm on Day 3 of my proton therapy and I want to name my tumor.

It's a (if I can get this right) suprasellar sphenoid chordoma. Basically this is a non-cancerous tumor caused by leftover fetal tissue that should have gone away when my spinal cord formed. It took a long time to grow large enough to cause any problems (see previous entry "protons in my brain").

Anyways, after over a year of seemingly clear MRIs I decided to go ahead and get the recommended treatment. (The doctors knew it wasn't gone because it's in the bone at the base of the skull, they just couldn't see it in the scans). The new center is now open here in Houston so I wouldn't have to relocate and miss two months work and spend huge sums on rent and living expenses. Instead, I take 2 hour long lunches and drive up there and grab a bite on the way back to work.

The actual treatment is realy not too bad. Proton therapy is much easier on the body. Unlike x-ray radiation which is traditionally used, proton radiation deposits most of it's ionizing radiation within 1mm of the tumor site. And there is no lingering radiation after treatment. So far I haven't had any ill effects except for a couple of small things I'll discuss in a bit.

Monday was my first treatment and I'm told that would be the "worst" only because it would take about twice the normal time. What they do is immobilise my head with a custom mask as I lay on what can best be described as "The Slab". The first day I was strapped down (only by my face) for about an hour. They took several x-rays to make sure they had the positioning correct. My neck was starting to get a bit tight. They raise me, lower me rotate me around my head, rotate the equipment around me, take more x-rays, make this noise and that noise. Everything was more or less ok. I'm not claustrophobic by nature but I was a bit tense. Then I notice as the actual dose is being administered. A weird feeling, not painful, is in my head and a muscle along my spine next to my left shoulderblade tightens up. And I smell ozone! I didn't expect this. They said I'd feel nothing. The feeling in my head may have only been imaginary and even the spasm may have just been tension... I'm not sure.

When it was over and they took the mask off I had a bit of a fright. My right eye was very blurry. I was told that because of the very close proximity of this tumor to the crossover of my optic nerves (within the equipment's 1mm resolution) there is about a 10% chance I'll lose half my field of vision in both eyes. So when I can't see after my very first treatment, I'm a bit worried. I tell the tech about it and she seems unconcerned. It eventually went away and my best guess is it was caused by the mask. It may have not been perfectly positioned (or more accurately *I* wasn't postioned correctly within it) and put some pressure on my eyelid and also probably bent a few lashes down into my view. Yesterday and today I had no similar problem. Although, yesterday that muscle tightened up again as well. Today it didn't so I'm hoping that was just anxiety related. I don't think I'll get used to that smell. I only smell it on the second dose though. They do the first dose through the top of my head I believe so that may explain why I don't smell it then. The second one I think is from behind.. maybe a bit to the side.

Anyways, as I lay there I can't help but think of some futuristic Flemingesque torture device ("No, Mr. Bond. I expect you to DIE!")

So, what should I name this thing. It's eating my skull and trying to blind me. I thought about calling it the Zombie but it's not really trying to eat my brain. I thought about calling it Odysseus after the tale of the Cyclops but that doesn't really fit either. "Marla" has already been used.

I think you've already answered your own question - Blofeld!

Heh... not quite... but I may call my tech that next time I see her.

I'll definitely ask her if she expects me to talk.

You will let us know if she got the response right won't you

You know it.

.... Better call her Auric Goldfinger instead.

Yesterday's session was... interesting. 'Interesting' is a word I'd prefer not using considering that I'm putting my brain in the path of a cyclotron beam. Tuesday the computer network that controls the system went down so I wasted a drive into town. Yesterday it was back up. As I'm being strapped by my face onto what I refer to as "The Slab" the tech assures me that it's back up but running slowly. Yea, it was another 45 minutes until I was unsnapped. The Slab is articulated in that it can be raised and lowered and rotated around a verticle axis (through my head). Normally I get two doses. During the first one I'm rotated in the gantry so that the aperture (from which the protons come) is pointed at the top of my skull. During the second I'm rotated back to zero and raised up so the gantry can rotate the aperture gate assembly clockwise beneath (behind) my head. (This is the one I don't like because this is when I smell the ozone.)

Yesterday the gantry rotated counterclockwise. I had been raised up... to allow this big bulky metal boxy shaped thing to pass below me and it's rotating the other direction and I end up staring directly into the barrell of a Proton Ray Gun... Not that the protons are what really scare me at the moment... what if this thing goes a bit more squirrelly and the slab raises up another foot or so and the gantry starts moving again... I cannot release myself from the mask... this gantry is three stories tall and being rotated around me. If my head got in its way I'm sure it wouldn't be damaged a bit... the gantry I mean.


I was Calm Cool and C'Rob about it and jokingly asked if they had replaced the computer controls temporarily with an imported Igor downstairs throwing levers and pulling chains.

However, in a couple of hours when I go for today's session you can be sure I'm going to ask if there are any safety guards to prevent me from being ground to a pulp when the controls are malfunctioning.




On another note... I meant to post this last week. As I was lying there on The Slab I was reminded of a scene from another film... Project X. Should I name the tumor after a chimpanzee? (Interestingly IMDb lists the chimp actors before the humans. I can't remember but I assume the film credits did likewise.)

Hmmm.... you could call it BoB? ... or call it '2legs' and blame it all on... someone

Well, if it disappears and never comes back I'll call it nighthoover.

Oh dear Bob no - one Nighthoover is one too many

Well... It's hat time. I've got a nice little bald patch right up front.


I think I'll go with my Scottish military style beret.

Oooh. You could shave your head & look like Jamie from 'Mythbusters'. But do you have the walrus mustache?

Well, I did shave my head (right before the local cold snap ). And I occasionally wear my beret tam. I don't have that mustache. Instead I have a Van Dyke.



I compleated my last treatment yesterday, (rang the gong) and took my mask home.

I haven't decided what to do with it yet.


I am so glad to have that over with.

It went much better than even my Doctor expected. Except for the two small bald patches I have NO ill effects from the treatment. (Dr. Woo even joked that they must have forgot to turn the beam on. I replied, "then who put the Nair in my mask?")

Yay! Here's to remission! That's really cool there aren't any significant effects.

The mask. Hmm... auction it off? Make it a featured element of a modern art exhibit? Lend it to a horror movie villain?

Glad to hear it

Ok... had to dig back a bit in my journal to find this thread, but I have one more thing to add to it.


Basically, I've had two doctor visits this year. In January, the surgeon told me every thing looks great and he's revised my appointment schedule to YEARLY MRIs instead of bi-annual ones as he sees no signs of regrowth in the area where the tumor was.

My other appointment was with the endocrinologist. The last time I met with her was too soon after last year's blood draw to have lab results, so I've been in the dark about how my hormone levels are. (The tumor was adjacent to my pituitary gland). She had no surprises for me as well. I had ample reason to suspect my testosterone levels were a bit low and that's all she had to report.

So, starting today I begin a lifetime regimen of testosterone replacement. I'm starting with a gel version. As it was described, I thought I'd have to apply a little bit of gel to a small area on my arm or shoulder, but when I opened that first packet this morning... WOW that was a lot of gel. I basically covered my entire upper right arm with the stuff.

The doctor did mention that most patients end up using the injection version. We'll see how long it takes me to switch.

Anyways, as it stands now, after having one surgeon dig around and pull out parts of my skull out through my nose and having another stick my head in front of a cyclotron particle accelerator for two months, if the only long lasting ill effects mean that I have to boost my testosterone a bit, I have to say, "RESULT!"

I refer the honourable member to my previous post

Lovely!


So, umm, what happens if you don't take your testosterone? You stop liking big noisy motorcycles n' stuff?

I never did get around to naming that tumor.

Looking back on it now and noticing how liberated I feel now that it is gone and how the fear and trepidation it gave me is but a memory, I think I'll name it......









DUBYA!

How appropriate