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Jay Lake
Date: 2013-12-21 08:14
Subject: [cancer] Getting the brain MRI, the further adventures of Self-Directed Patient Man
Security: Public
Tags:cancer, death, friends, health, healthcare, jerseygirl, personal, radiantlisa
Getting the brain MRI this past Wednesday was a pretty tedious process.

First of all, in the continuing tradition of a daily crisis in my life, just as I was sitting down to dinner with Lisa Costello, Jersey Girl in Portland and C—, the hospital called to tell me that their MRI machine was down and my appointment that evening was cancelled.

I had a polite shit fit about that over the phone. I explained that I am a terminal cancer patient going to NIH next week to try to enter a clinical trial which might extend my life. I explained that I needed the MRI performed, read and released to me by mid-day Thursday so I had time to request a disc from the Imaging Library and overnight it to NIH for Friday delivery, as this was part of my qualification process for the trial.

A few moments later the person on the phone came back and said that I qualified for the exception list. The other MRI machine was up and running, but they were so backed up that they were only scheduling people with critical and immediate needs. My 9:45 pm appointment was rescheduled for 9:45 pm, but on the other, still-working MRI machine.

Having dispensed with my weekly requirement for adrenaline surges (for about the fourth time this week), we proceeded to have our dinner and go for our soak at Common Ground Wellness Center. Then Lisa and I hied ourselves over to the hospital complex, because we figured being in the waiting area and thus undeniably in line for the procedure should something else go wrong was all to the good.

This resulted in us spending nearly three hours in a deserted waiting room in a deserted building at night. A few other patients wafted through. MRIs take a long time, so three hours was enough for two people before us. A rather put upon, but still appropriately polite and professional, tech made occasional appearances. Mostly we sat and played with our iPads and tried real hard not to fall asleep.

While I've had MRIs before, I've never had a brain MRI before. If you've never seen an MRI machine, rest assured that they are terrible traps for the claustrophobic or the circumferentially enhanced (I fall into that latter category myself). And frankly, much time spent in an MRI would drive anyone to claustrophobia. And they are noisy. Like Anvil Chorus noisy. Like sticking your head in a jet engine noisy. Something on the order of 125 dB clanging right next to your ears for however long you're in there.

I was handed earplugs. A mask was put over my entire head that looked sort of like a cross between the Alien facehugger and something Dumas wrote about, rendered in the bland, taupe, pebble-finished plastic so beloved of technology designers. Pads were inserted around my head, after a brief discussion of how surprisingly large my skull is.

I then spent forty-five minutes in the tube.

Lately I've been meditating in the mornings. As a formal practice, I mean, not the lie-in-bed-and-groan-about-morning meditation that we all indulge in from time to time. So I meditated inside the MRI tube for forty-five minutes. Which is about like trying to meditate on the flight line of an aircraft carrier. On the plus side, the tech later reported that I held amazingly still, which helped them get good images as quickly as possible. On the minus side, I had my head in an MRI tube for forty-five minutes.

We also had yet another discussion of why I needed a stat read from Radiology, and what I was doing with the scan. The tech confirmed that I did indeed have a brain. The next day, Radiology confirmed that I did indeed have no intracranial metastatic disease. (This was the desired outcome.) After a certain amount of me calling around and cajoling people Thursday morning, I got my discs and sent them out.

Once again, I had to be pushy and pushy again. Self-directed patienthood is not for the faint of heart or unassertive. But combined with Tuesday's CT scan adventures, I pulled two major medical procedures out of my treating hospital in two days. It sure helps that my providers have come to know me well, and understand that I'm not a loose cannon. It sure helps that my health insurance carrier covers this stuff without pre-authorization. It sure helps more that I know who to call and what to say.

At any rate, the brain MRI is in NIH's hands as of yesterday afternoon, and I am still off at the end of this coming week.

Post A Comment | 9 Comments | | Link

User: yourbob
Date: 2013-12-21 16:29 (UTC)
Subject: (no subject)
You continue to amaze, delight, and inspire.
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User: martianmooncrab
Date: 2013-12-21 18:54 (UTC)
Subject: (no subject)
Like sticking your head in a jet engine noisy.

ummm, I didnt think it was that bad, it reminded me of being shipboard with the noises and clangs and shudders, but then, ships are live metal creatures. sounds of the Automatons savannah.. to me the worst part was where my nose started to itch..
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User: joycemocha
Date: 2013-12-21 20:24 (UTC)
Subject: (no subject)
Yow. That much juggling would drive a non-sick person over the edge.

Hugs, m'dear, and good luck with the trial.
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User: mmegaera
Date: 2013-12-22 00:28 (UTC)
Subject: (no subject)
I've only had one MRI in my life, of my shoulder -- and I thought I'd completely forgotten how badly being in that machine triggered my claustrophobia until I read this.

I'm glad you got through it okay. You are a brave man (no, not just for this, but from my POV, definitely for this).
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User: willyumtx
Date: 2013-12-22 01:28 (UTC)
Subject: (no subject)
How was Common Ground? Did you do the hot tub thing?

Is it clothing optional/required/forbidden?

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Jay Lake
User: jaylake
Date: 2013-12-22 16:09 (UTC)
Subject: (no subject)
Hot tub thing of course! Every time.

Clothing optional, and almost no one ever wears anything. Unisex locker room and showers.

It's a safe space, so there's no eyeballing or cruising. There are men-only night and women-only nights, as well as trans-only nights.

We like it a lot.
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Agent Mimi
User: agent_mimi
Date: 2013-12-23 12:32 (UTC)
Subject: (no subject)

This really brings back the memories of all those the late nights in hospital waiting rooms. So glad you got the MRI and confirmed no intracranial issues, and also are brainful.
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User: klwilliams
Date: 2013-12-23 22:41 (UTC)
Subject: (no subject)
I had a brain MRI as part of my MS diagnosis. Before I went, I took two xanax and a Benadryl. I fell asleep leaning against Chaz's shoulder in the waiting room, I fell asleep during the MRI (I'm wildly claustrophobic, and even though this was in an "open" MRI, my head was encased in a plastic mask), then I fell asleep in the car ride home, and once against for several hours in the easy chair at home. That's the only way to have an MRI, as far as I'm concerned.
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User: naomikritzer
Date: 2013-12-24 01:16 (UTC)
Subject: (no subject)
I had a brain MRI this past year due to migraine headaches. It sounded like I was inside a metal garbage can which someone was energetically hitting with two sticks.

It felt more like an elaborate practical joke than a medical procedure.
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