Thoughts on surviving MRIs, Gamma Knife, and PET/CT Scans

As part of my ongoing battle with melanoma/skin cancer I’ve had a lot of PET/CT Scans, MRIs, gamma knife and other procedures over the last three and half years.  We’re talking tons, many-many-many, dozens even (Snagglepuss).

According to the neurology team at the University of Colorado, I am the reigning U.S. and European champ for time spent in the gamma knife machine (~4.5 hours).  Yup, 4.5 hours with my head “toner-cartridged” to the table.

They also told me I’m the US/EUK record holder for the number of lesions treated (99 brain tumors). I always wanted to be famous for something.  Now, I may not have much, but I’ll always have my 4.5 and 99 (ho!).

With this in “mind” (ha), I ‘m probably qualified to talk about this subject, at the very least from a user perspective.

Wait a sec, what are you talking about man?

Sometimes I forget that the world does not revolve around me and my experiences 0-;.  If you would like to get a lay person’s, rather crude description of these various medical tests click on my MRI, CT/PET, or Gamma Knife posts.

On music and whales making out

One of the options going into most procedures is to get music pumped your way either through headphones or inline speakers.  Pretty plush eh?  Kind of make you want to dive in?  Yeah…

The reality is, especially for an MRI, I always struggle to hear a thing.  The intense banging and pummeling of sound waves reminds me of a Jacques Cousteau video and whale mating season.  Music, while a nice thought, gets trumped by the amorous calls of Moby Dick.

If you are, on other hand, having a quieter moment like with stereotactic surgery, then tunes are a likely option.  Here I I’d like to call upon a cautionary tale of my own. One of the bands I’ve obsessed about for the last few years is The Disco Biscuits.  Yeah I’m a closet jam-bander, with a history of confusing musical choices (from my wife’s /main stream musical perspectives) as the Grateful Dead, DBs, Umphrey’s, Papadosio…the kind of tunes you either love to love or hate with passion; and are always secretly trying to proselytize as well.

Funny but true

Funny stuff with hints of truth…but I discovered that rocking out to dead set/other was not for me…btw…a friend recently texted this pic to me…if you are author or know who created please let me know so I can give credit as well as get a better render!

Anyway, one time I did choose to have them serve-me-up-some-of-them-fat-Biscuits during a particular knock-down-drag-out jam session with the Gamma Knife.  It didn’t work out all-that-swell.

While I got my groove on for a bit, after a while I didn’t want to be listening that intensely.  Again, anyone who loves thirty minute forays into experimental melodies and imaginative chord changes knows you gotta really follow the tempo and the breaks and the flow and whatever other made up musical mumbo-jumbo us jam banders use to try to sound authoritative during set breaks.

I also found it slightly embarrassing when the Disco Biscuits “Memphis” was pumping in the background as the neurosurgeon told me how it went…

”Making easy money pimpin’ hos in style, the only one from Memphis from Graceland,
Making easy money pimpin hos in style…”

After that I started listening to classical music.  It does what it has always done for a musical Neanderthal like myself and produces, if I’m lucky, a complete state of unconsciousness.  I can think of no better way to spend time down under than in that way.   Ah to wake up snoring and drooling on oneself!  Now that’s music.

Permission to totally freak out

Here’s the problem- all of these tests and procedures require some level of confinement and, at times, a near maddening amount of noise or equally disturbing, unearthly silence.  There are plenty of opportunities to go completely bonkers along the way, at any time during this process.

While the technicians will give you something to push if you do lose your stuff, I don’t recommend that…Pushing the “oh #@!* button” usually equates to starting over or at least rewinding to some degree.  That sucks, especially if you are having a hard time in the first place.

Believe me I know this is easier said than done- whether you’re having your first or thirty-fifth or two hundredth.  The thoughts before, during, and after can be overwhelming.  I have felt sometimes like the sheer pressure might send me flapping for the coocoos nest.

How do I stare down the narrow confines of that tube for thirty-sixty-three-hundred minutes at a time?  Who can wait the unnerving hours or even days for results without eyeballs popping out of sockets, lumbar snapping or heart exploding?

There’s no getting around the fact that these procedures are stressful: from the nasty prep drink they give you (don’t let the delicious even cute sounding “Moca Coffee” names fool you), to the tight quarters, to ultimately fretting about results.  There is no way to prepare or predict your reaction.

I would never pretend to know what the guys and gals who have gone to war have felt, but I think to a certain degree there are parallels. People you thought would be brave and strong in stressful situations fall apart; while others who are generally big sissies rise to the occasion.  Is either response bad?

What I find most effective is to tell myself that it is okay if I do lose my marbles. I’m no psychiatrist (your saying ‘really?’ with a touch of sarcasm) but my experience is that I can become what I fear.  A lot of stress and resistance can lead to disaster, a self-fulfilling prophecy, despite my best intentions.

So, I give myself the following pep talk when the panic rears its ugly, many hydra heads and it can and will rear up a few million-billion-trillion times.

“Try not to lose it okay? But hey Leland you have my permission to squeeze the ever loving crap out of that yellow plunger and freak the freak out if you have to!”

Owning the possibility of self-combustion, giving myself a free pass to fully decompose, seems to take the edge off.

Take Your Meds as Directed, Maybe

Anyone that has gone through a protracted medical battle has probably noticed the very real tendency in the medical community to worry about pain.  This is perhaps no fault of their own.  Pain avoidance is ingrained in our larger society as has been well documented and discussed ad nauseam I’m sure around the media and our respective water coolers.

Add to this is the fact that most nurses- if not doctors (I find they are generally a more aloof or distant in their intellectualism and authority) – are truly caring people.  They don’t want to see you suffer and will go to Herculean lengths to make sure you don’t.

My general rule of thumb is to ask the nurse or doctors what they think I should take.  Then, and I say this kind of thing a lot, I make a decision based on my own comfort level, making up my own mind.

So, for instance, though it is invariably offered, I’ve never taken valium before gamma knife.   That’s just for me.  With a family history of addiction (okay so now you’re using that “Really” phrase with amble sarcasm, again) I’m generally cautious about narcotics and, so far so good, have been able to manage my anxiety with other means (see below).

That’s not to say I don’t let them give me something for the pain when needed.  Just ask my wife, physical pain can bring out my inner baby like few other things.  In fact, the one time I came close to a real panic attack was during one of the shorter tests- an MRI of the brain.  I had injured my shoulder working out.  Lying prone in the same position was excruciating and, in the end, nearly maddening.  This was a pain, in fact, that I didn’t realize was bothering me until I couldn’t shift around at all.

So now as a matter of course I take a few Tylenol, Alieve, Aspirin, Ibuprofen – pick your mild pain killer – before going in/under/beneath.  If it’s something more intense (e.g. the doc is whipping out the drill gun to put four screws in head for gamma knife) then I let them give me something more powerful.

Don’t think, count

There’s a saying from a program I’ve attended for a long time which goes “Think-think-think.”  A friend of mine once pointed to that saying on the wall and told me it was not for me in certain situations.  He was he right.  This is one of the “certain situations.”

Drawn out medical tests are not, in my opinion, an opportune time for heavy thinking, man.  As Yoda might have said, “Thinking is the path to fear…Fear lead to paranoia…Paranoia leads to screaming expletives, ripping out IV, and running around the hospital acting like a moron…”

So to avoid disturbances in the force I try repeating the same phrase, over and over.  I use a spiritual or religious saying, name or word, and count each time I say it in my head.  I’m not sharing what the words or phrases are here (you can email me if you like, happy to provide) because, imo, it only matters to me.  I recommend finding something meaningful to you. Might take a little soul searching but I’m sure you can do it…and then repeat it.

I have counted my phrase literally 5000 times, over and over, during longer sessions.  I pick a goal like 500 and when reached, try to climb to the next one, like 1000.  This practice by the way is great for everyday life.  I generally leave the news or radio off in the morning on the way to work, with the same clarifying results.

Btw…I also, as others around the internet have suggested, toss in some creative imagery for good measure.  With each phrase I try to imagine thousands of Pac Men descending upon a ghoulish crowd of defenseless cancer cells and KICKING-THEIR-SKINNY-ASS-BUTTS.

Don’t do time

I think one of the places the physicists and spiritualists sometimes find common ground is with the assertion that time is a figment of imagination or a made up construct of human consciousness.  All I can say is that I have no business “imagining time” during gamma knife or MRIs either.  Worrying about time is another way to punch my ticket on the insane in the membrane train.  So if my inner Subaru of impatient children starts asking me “How much longer till we get to Vail Daddy,” I tell them to play the slug bug game or just, you know, shut the face.

Tell your eyes to shut up too

Speaking of shutting up, another strategy I use is to keep my eyes shut.  I mean it.  I don’t open those suckers for nothing.  The eyes in this case are windows to impatience and potentially losing marbles.  I don’t want to see how smooshed I am or stare at the spittle marks someone left while foaming at the mouth before me.  So I shutter ‘em up and do my best to keep them that way.

Finally…a list

If you are like me, tearing through pages on the internet trying to figure out how to survive, this article was perhaps a bit long winded.

Where’s the “Top 6 ways to survive a gamma knife procedure list dude!  Just give me the cliff notes!  The goods man, the goods! 

So, alright already, here’s a repeat/rehash of the above plus some extras:

Top 7 ways to survive the tubes:

  1. Listen to classical music/whales mating/whatever bores you
  2. Try not to freak out/it’s okay if you do
  3. Take meds as directed/make up your own mind about them
  4. Don’t think/count sheep/favorite prayer/pairs of shoes/hairs on palm/what ev’ floats boat
  5. Don’t think about time/time lead to suffering/suffering bad/just ask Yoda
  6. Keep your eyes shut/whole time if possible

…but wait there’s more:

7.  If wearing a robe, tie it in back unless you want to show off your double mud flaps (eg. buttocks, hams, hinder             regions) on way to bathroom

8.  Avoid bringing in ferromagnetic metals into your next MRI, e.g. your watch, Swingline staplers, jack-hammers,           wire frame bras. This could lead to epic failure.

And lastly but not, um, “leastly”

This is something I do before, after, or whenever I remember, a procedure.  I find a one shooter/bathroom where I can lock the door to be alone for a minute and I pray.  I get on my knees by the sink (hopefully don’t put my phone and wallet in because they usually have automatic faucets) and, similar to concession that I made above to the possibility of freaking, I try to just give myself to whatever is going to happen…

…something like…

“I don’t know what’s best for me or You or what might help me or anyone else, but help me to be and do whatever you need me to be or to have done. Most of all help me to accept whatever happens.  Yeah I’m asking, praying, and believing that the results are good for me, for my wife and the boys, but at the same time I’m asking to carry myself with some semblance of manhood, if possible, come what may.  Amen”

That’s all.

Hey –If any of this resonates or if you have some good strategies or suggestions you’d like to share please comment on this page…also if you would like to get advanced notice on future posts please subscribe.  Peas!

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