Thursday, June 28, 2007

MRI: Chamber of Horrors. [C]

"I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain."
Frank Herbert, Dune

What sick fuck invented this device? Jesus Frikken Christ that sucked ass. I'm thinking the blueprints probably came from something Josef Mengele was devising. "Coffin"? hardly. I wish it was that nice. I wonder if anyones seen a coffin that describes this device as such. A coffin is comfy, roomy, with a God damn lid that you can open and get the fuck out if you want to! And you don't have a fucking horrendous torture mask on your face (think football helmet style full face mask - but thicker and bolted to the table). It's not a coffin. Its a god damn rifle bore and you're the fucking bullet. "The pulses sound like hammers pounding on the machine"? Bullshit. That would be somewhat pleasant. I can't describe it. I could say the decible level would have to be in the 80-90 range. And it pulsed, dammit! And It changed up! Different types of sound! And duration changed! Fucking torture! The disposable (i.e. crap) earplugs helped some. Kind of like a band aid helps a bullet hole.

My writing is masking my trauma. Maybe?

Am I claustrophobic? No. But I've never been shoved into a fucking rifle bore that I could not extract myself from. And then there is the mind set. It had been about 26hrs since I learned my cancer might be back. I'm in a state of panic. Worried, again, about mortality. Fearing Death once more. Was I in the absolute wrong state of mind for an MRI? Is the Pope a Nazi? hmmmmmm. maybe I should write and ask him about my Josef-MRI hypothesis?

So we get to the MRI center at Georgetown. Early. And we wait. We laugh and screw around like always then they take me back. At this point I'm unsure if I've ever had an MRI. Mind you, when I was first diagnosed I had 3-5 scans at several locations. In hindsight, if I had one, it was an open one. An extremely nice open one. Anyway, the tech sets up an IV for the contrast. I would love one fucking scan without contrast. It's not radioactive Iodine contrast. It's not radioactive at all. Nothing is for an MRI. This is seen as one of the big benees of an MRI. Whoopdy Fucking Doo! I'd take a full body CT scan once a month indefinitely instead of one MRI.

"I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain."

While waiting for my turn I hear a machine. "Wow. That's loud" i say. The tech responds "don't worry, yours will not be that loud". "That" being so fucking relative as to be pointless. Onward to my room. I see the machine. I realize I've never been in one like this. Still think no biggee. I lay down, face up. They set up the IV. He bolts the head restraint torture device on me. "I think - maybe I can sleep in this like I do with PET scans?"

I'm loaded into the rifle. "Fuck the top of the machine is right in my face!" I shut my eyes. My foot hits the entrance as I go in. Unfortunate reference point. I stop moving. I open my eyes. "Bad idea!". I close them. I start to relax. There's a knocking sound. The magnets shifting. Maybe that's the hammer sound people describe? If only that was all that happened. The radio waves start up, constant and pulsing. Weird, loud sounds. Damn. I can't sleep. "45 minutes and I'm out"........the sound continues. My mind wanders......................"what if I'm dead and this is hell?............"Jesus fucking Christ! Don't go there! 45 minutes. Still.......what if? What if my hell is in this machine for eternity? Fuck! Fuck! Fuck! Deep breath. Relax. Find a Happy place........Dani and I. hanging out and laughing........ [OBLITERATED]"

The Change in pattern of the noise & level is making it near impossible for me to find a happy place. Plus they run several "tests" requiring shifting of magnets. So no noise. Relax. The the torture started again. Think "Chinese water torture from hell".

"That sucked. need to get more intense. Dani and I having sex........" a smile crosses my face.......[OBLITERATED]

It progressively got worse. Think of being on a Mountain with Dani. Gone. Play a game. Pretend I'm being tortured and I'll never give up the secrets. "Bad Game". I struggled with the alphabet. I counted backwards for 10-20 counts. I started to think it sounded like a very loud techno-club. I smiled for a little bit on that one. Then I was back in the rifle. Panic would rise and lower. I wasn't sure anyone could hear me while I was being scanned. I was fighting my darker thoughts. Hell. Figuring out when I died. "Was it on the way to the hospital?" My irrational mind was trying to rationalize how I couldn't be dead. Of course, in hell, that would be one of the "tricks". Yes. I'm losing. I tried to recite Herbert's Mantra:

"I must not fear.
Fear is the mind-killer.
Fear is the little.........[OBLITERATED]"
"Yup. I must be in Hell." Back and forth my mind went. Fighting itself. I thought of lab animals. I thought of karma. I thought I might not ever be able to work in a lab again. Worried i would have a panic attack. Worried I wouldn't be able to breath. Worried I would never see Dani again. During the short silent parts the tech would ask how I was doing. First time she asked my voice cracked. She had been doing MRI's for 7 years. Probably knew I was fighting the whole time. Regardless of the crack. Time lost all meaning during the first round. "how would they get me out if there was a power loss?. FUCK! FUCK! FUCK! Focus. I need to focus. Happy thought. Why can't I keep happy thoughts."

My eyes opened once more during this whole time. And closed immediately.

And then the tech announced "last test". Helped me keep my shit together a little bit. Sort of. Still fighting my demons. At the end of it I could hear them near the machine. I waited an "eternity" and asked "am I done?" Yes came the reply. Then I was moving.

I cracked. I would have done anything to get out of there. It's sensory overload and deprivation. All at the same time. It is an insidious, evil device. I conversed with the tech afterwards. She said power of suggestion is too strong and one never knows how one will react. So they don't say a word as to what you will experience because they have no idea.

Am I claustrophobic? It's all relative. Everyone has a degree of it. And again, my state of mind going in was horrible.

When I saw Dani I couldn't speak. I would have lost my shit if I tried. I signaled mostly. While walking she asked me questions out of concern. I had to put my finger to my lips. She understood.

On the way home I took several wrong turns. Driving 7 years in this city and I couldn't figure out how to get home.

Traumatized by the most advanced imaging diagnostic tool we have. Now I have to call and see if I need surgery ASAP.


Wednesday, June 27, 2007

False Positive? [C]

It just occurred to me. Nothing like being told your cancer might be back to throw you in a complete state of panic.

I think either way the doc is gonna have those nodes removed. And it is on the opposite side of my neck from my first biopsy so maybe I'll get a matching scar? How cool would that be? I could tell people its from the upper & lower canine of a Griz........Just barely scraped me whilst I plunged my swiss army knife into it's heart!

my MRI is scheduled for 6:15 tonight. I have a July 13th appointment with an otolaryngology surgeon. It will be bumped if the nodes look suspicious.

Everyone start thinking "False Positive"


201.9 [C]

Thats Lombardi Cancer Center diagnostic code. That's what they gave me. 201.9 - "Hodgkin's Lymphoma -unspecified."

Edit: That is ICD9 code (International Statistical Classification of Diseases and Related Health Problems), not unique to Lombardi.


Tuesday, June 26, 2007

Why do Dr's suck? [C]

Why do Post-Doc Docs fuckining suck ass? I knew something was wrong. My wife knew something was wrong. And all he could do was give the facts.

Our favorite line was "No one called you about the PET scan results?"

2 neck lymph nodes were positive for PET. Then my Onco came in and discovered another swollen node in my armpit that wasn't there during the PET in early June. It may be Hodgkins. It may be infection/left over mono issues. But she doesn't want to take any chances.

I scheduled an MRI. July 7th. 1AM. If they can visualize them then they come out.

So I'm gonna wallow in self pity a bit before my wife gets home......good excuse too have a whiskey no?

If it's Hodgkins I'm fucked. And just this week I decided to stop being honest about why I've been out of work. Figuring it's no big deal. The shit is curable and I have my own health coverage. No need to discriminate against me. I can't possibly estimate how many jobs I've applied for........7-10 yesterday. I do know how many responses - 3 calls, 1 interview.

I'm damaged goods. I had the opportunity to tell Mr. Moore my story and maybe have a bit in his current movie. I chose discretion. I think I chose wrong.
Fuck it. Fuck it all.

That felt good.


Wednesday, June 13, 2007

Fun With Radiation [C]

From 11/05-6/11/07 I've had

7 CT Scans and 4 PET Scans.

But how much radiation is that? radiation is measured in sieverts. REM/RAD is being discontinued. The sievert (symbol: Sv. millisievert = mSv) is the SI derived unit of dose. It attempts to reflect the biological effects of radiation as opposed to the physical aspects, which are characterised by the absorbed dose measured in grays. It is named after Rolf Sievert, a Swedish medical physicist famous for work on radiation dosage measurement and research into the biological effects of radiation.

1mSv = 100mrem

PET = 7mSv
CT = 10-12mSv (whole Body scan)

4 PET scans = 28 mSv
7 CT scans = 70-84 mSv
Total = 98-112 mSv

We'll go with the "low" number and say I've had 98mSv since 11/05.


Background radiation exposure in the US is ~3mSv/year.

A chest X-ray = 0.02mSv

1 CT = 500 x-rays
1 PET = 350 x-rays

So my 98mSv is 32.7years of background radiation or 4900 chest x-rays

Do you need a CT scan? Article on the abuse of CT scans for "proactive (absence of disease) diagnosis":

And of course if my previous insurance had let me get the more accurate/costly PET scans I would have had a total of 77 mSv. That's a significant reduction, 12 mSv, no? At least 600 less chest x- rays/4 years less background radiation seems significant to me.


Tuesday, June 12, 2007

Always Trust Yourself [C]


Hi. I went in for what I thought would be my quarterly CT scan and ran into a "comedy" of errors, lack-o-communications, and professional condescension/you're the confused patient attitude. All at the beautiful Lombardi Cancer Center.

I made an appointment a month ago for a CT scan. Then made an Onco appointment and asked for the Dr. CT order. They never send it but I ask for it anyway. Today I go in to Lombardi and ask for my Order. I'm handed an Order form I've never seen before. Maybe they updated it but it calls for a scan and doesn't clarify with or without contrast. I always get contrast.

I tell the secretary and she tracks down the Dr. The secretary comes out with the form marked "No IV Contrast." i say this is wrong and she goes back. She comes out and says "that's what your Dr. wants". I explain I've always had contrast and she goes back in. Out she comes saying no contrast required.

We give up and head down to radiology. Reluctantly. As we were walking, I told Dani I should have left it alone or marked "with contrast" myself.

Once down there we talk to radiology. asking them if they can just give me "my usual (LOL)". They look at the Order and say they have to follow procedure as Ordered. I start to fill out the radiology forms. Reluctantly. Dani and I don't like this. Why change procedure? especially without informing the patient? And what good is a CT scan without contrast for blood cancers????? Might as well palpate me for tumors

We head back over to Lombardi. I tell my Dr.s secretary that I'm really uncomfortable with this. Back she goes.

A Nurse comes out and starts off the wrong way. Just very condescending. We start arguing. She insists I'm here for a PET not a CT. We go back and forth with Dani getting more and more agitated. The Nurse decides to get the Dr. (she is in clinic so very busy with patients)


Out comes my Dr. We start arguing. She thinks I've confused scans. That I've been having PET scans all along. I don't back down. I insist otherwise. Then it hits her.

Although PET scans are the preferred method to track my type of issue, my old insurance refused to pay for them. So SOP is to fall back on CT scans. She forgot. Nice. So I canceled my CT scan, had to go to Nuclear Medicine and schedule a PET scan and reschedule my post-scan Dr. check up.

I wanted to do the "You were wrong/I was right" dance on all their faces!

So my Dr. Ordered me a PET scan, forgetting I was still getting CT scans. I schedule a CT scan because that's what I was told to do after my last one.. Radiology was going to accept a PET scan Order and give me a CT scan without contrast. Is it deadly? No. But a CT scan without contrast doesn't find much in the way of Lymphoma/Leukemia.

Never back down until things are spelled out. No matter how many higher degrees you're fighting.