Normalized

Woke up @ 4am this morning thinking about the brain scan/MRI today at CU. Finally rolled out of bed @ 6. Quiet time. Work out. Took Elsa for short run. Made breakfast for the boys. Shower. Ate gruel. Had green drink and green tea along with tumeric concoction. Fought off a few dozen marauding crescendos of fear. Hit my knees a few times. Tried to get myself in a ‘whatever happens happens’ state of being and remain there. Sit. Stay boy stay. Did I mention they were checking my brain for any evidence of metastatic tumor progression today? Fffffreaking out. No. Stop. Hello knees, again.

Late to CU hospital in Denver. Blame Denver traffic. They (being front desk) should know better. Come to think of it, they likely do know better and so do I. And I will, ah, do better next time. But this time blaming Denver traffic is sooo much easier, perhaps.

Nurse has trouble finding a vein. I reach into my ‘small talk/humor with nurses bag’ and tell him ‘how I found it pretty hard to get a line in this morning too…when shooting heroin.’ He smirks. I wonder if I have tried that one on him before. He finally gets it (not the joke, that was kind of stupid, the vein) and apologizes for impending deforestation of hair follicles on my arm. I don the funny gown. Don’t tie pants very well. Butt likely hanging out. I’m not really that concerned. Should I be? I have other things on my, um, mind (hee hee). But I mean this isn’t prison…even though they are sliding me into a narrow cell. I fall asleep listening to whale calls and thinking about potential alternative therapies. Gripping subject matter, obviously. Wake up snoring/drooling/hoping they took some good pictures with a definite opinion about what might constitute ‘good’ in that context.

Took elevator to Breeze’s office. Couldn’t remember which floor at first. You would think we could get there on muscle memory alone, but no. Short wait. Surf inspirational stories and sayings on phone along with latest hockey news, tech updates, FB, outlook, word of the day. I think I probably used to sort through all that stuff and try to predict, as though reading tea leaves or palms or chicken bones or something, what the news might be based on a kind of wacked ‘Conspiracy Theory’ sort of logic. But, not this time, not going there, I’m kind of over that, maybe, till next time when I decide to sacrifice a goat in the waiting room.

Filled out the same, requisite paperwork with a pen taped to a white plastic spoon cuz you know, in case you didn’t know, we live in a digital age and this time when I get to the question, ‘Are you pregnant or currently nursing’ I might just fill in the black circle next to ‘Hell yes.’ They check my weight (um, really man?), blood pressure (high) but pulse is low cuz I’m gangsta with antifreeze for blood, or something like that. And then it hits me, somewhere between Sarah reassuring me that all is good and going to the bathroom to get one more plea from the parquet floor before they deliver the news, this is normal. To use an overused cliche (um isn’t overused the definition of cliche?), this is the new normal.

How many times have I lived the above, before, in some form or fashion over the last 4 plus years? By my estimates I’m converging on 50 MRIs, if I haven’t already summited that peak.  The thoughts, feelings and events described above, are basically the same, every time. Its groundhog day at CU hospital, again. Its groundhog day at CU hospital, again. Its groundhog day at CU….

Thankfully the results were “Normal” too or, let me clarify, fit the “New Normal” mold. In my case, having dozens of spots light up like Christmas lights on the MRI is normal. Normal also means those lights aren’t getting bigger or brighter. Normal is good.

Hopefully this doesn’t come off as too much insipidness and whining. Groundhog day, whaa whaa whaa. Poor me. There are friends and acquaintances right now dying in the hospital from abnormal scan results. I am, as far as I know, human and would like to be told, ‘holy cow dude you are all clear, no X-mas lights, that’s a fricking miracle’ instead ‘holy cow dude 4 years and you are still here, that’s a fricking miracle.’  There are more and more friends and acquaintances getting news like that too.

But in the meantime I will settle back, for the next few months hopefully, into the new normal because that’s pretty good.

PS. Thanks to those who have been wondering where the hay I have been. I picked up the ‘writing bug’ again while in the hospital in May and have been working on the next, probably quite crappy, American novel instead of ‘visiting’ this page here. In doing so I am reminded of that character in Camus’ “The Stranger” who is stuck writing the same page, day after day, of the book he never completes. I am also reminded of that late, great television show, ‘American Idol’ and all the cringe worthy moments in each season when intrepid guys and girls would swear on the blood of their mommies and daddies that they knew, without a shadow of doubt, they were most certainly the next great, american idol. Anyways if/when I get more than the couple of hundred pages I have written done I will likely post here and let the William Hung comparisons fly. Hey Stage IV cancer patients are still allowed to dream big right?

MRI Confirms Sightings!

Just in case you live in a cave and missed the news feeds yesterday, Tumblr and Twitter blowing up, Facebook buzz, or the nationally broadcast public service announcements regarding my recent MRI…

I am pleased to report that after months of conflicting information, rumor mills going bananas, and scandalous-bordering-on-dangerous innuendo, the neurology team at the University of Colorado announced definitively that, indeed, I have a brain. Ha!  Take that you army of sayers of nay and Knights that Say Ni. Score one for the good guys.

This does mean unfortunately – and I’ m so sorry Scarecrow – that I’m gonna have to find another song to sing at work.

scarecrow

In related news, doctors reported this week’s MRI demonstrated stability.  That means no new new cancer and no growth in existing tumors. Meanwhile the radiology team at Memorial Hospital in Colorado Springs reported that the PET/CT scan of my neck, chest and pelvis demonstrated ‘stable to improved.’ This is all good news.  We like good news.  You know good news is good.

Now we have to figure out what is causing the mysterious, seemingly never ending abdominal pain that has been plaguing me for the last few years and has gotten acutely worse of late. Gallstones, pancreatitis, food allergies, stowaway killer bunnies with really sharp teeth or, who knows? Nobody seems to know. On a more positive note, the office of the newly referred specialist will be able to see me sometime in late December, earliest.  Good thing its not indescribably painful.  Phew.

Anyways, THANK YOU to all of you for your continued support, prayers and words of encouragement!  We appreciate it.

…all right Scarecrow buddy, one more time, from the top, for posterity.

‘I could while away the hours, conferrin’ with the flowers
Consultin’ with the rain.
And my head I’d be scratchin’ while my thoughts were busy hatchin’
If I only had a brain.
I’d unravel every riddle for any individ’le,
In trouble or in pain.

Oh, I could tell you why The ocean’s near the shore.
I could think of things I never thunk before.
And then I’d sit, and think some more.
I would not be just a nothin’ my head all full of stuffin’
My heart all full of pain.
I would dance and be merry, life would be a ding-a-derry,
If I only had a brain.’

Magnetic Resonance Imaging (MRI)

So, I’ve talked in another blog about survival strategies for various medical procedures.  But what is it like to have an MRI…to lay on the table as the lights go down?  Hear the industrial noises cranking up? To feel the deep vibrations as you’re about to blast off into the tube?

There’s a lot of technical info ‘out there.’  But I’ll share some of the more visceral aspects from my perspective. Of-course everybody is different and will have their own experience.

My brain has been examined A LOT in various MRI machines around LA, Denver and Colorado Springs. After 20 or so of these things I can tell you that:

  • Lying flat on your back you get passed into long, narrow tube (called “bore”, there’s some serious multi-faceted irony in that name…I mean bore, really?)
  • I try not to touch the sides, supposedly the intense vibrations can burn you but that has not happened to me
  • The process usually lasts 30 minutes
  • There’s an an injection of contrast half way through that tastes like I’m sipping pennies from my favorite gas can or sucking on an exhaust pipe (ah..high school…kidding)
    • The injection feels warm ‘inside the privates’ and causes me to want to make pee-pee in my pants every time

The MRIs sounds are extremely loud (like “this one goes to 11” loud) so make I always make an effort to get those ear plugs they give me actually in my ears. I have a hard time with that but fortunately can rely on extensive waxy buildup. Not sure about average decibel level but the time I went to the Megadeth concert and stood next to speaker, with Mustaine killing it, is probably comparable.

For whatever reason, the barrage of sound in MRI invariably reminds me of whales mating. There’s a good deal of banging too (wait, “banging” is perhaps a poor choice of words after that last statement) as if somebody’s pounding (again another poor word choice) a hammer on a metal wall…so I don’t know maybe the sound is like whales mating while working on the construction of their undersea chateau with nice views of the Great Barrier Reef…

Then again, maybe the whale vocalizations could just be an exchange of pleasantries:

“So, what’s new Shamu?”
“Not much Hump, how you?”

However, plain old cetacean (whale) ‘ha ya doins’ are not quite as stimulating in weird, twisted way as imagining the sound of other, um, stuff. Oh well, whatever it takes to make that 30 minutes feel like 30 rather than 300 I guess…

Notes on MRI:

MRIs are pretty much The Standard. In other words the docs aren’t going to prescribe x-rays, stethoscopes, penlights, Polaroids, new IPhone apps etc when checking the head.

MRIs employ superconducting magnets that produce fields from 0.5-tesla to 2.0-tesla, or 5,000 to 20,000 gauss (that’s nerd talk for like a serious tractor beam from the Death Star…um that’s more nerd talk from like a nerd).

Considering the Earth’s magnetic field measures 0.5 gauss, um, you’re probably not going to pop an MRI mag on you fridge to hold down the grocery list or picture of kids.

Here is a list of some items I try to leave at home before entering the MRI room: metal office chairs, certain types of dental work (eg my grill), some heavy metal tattoos (heavy metal man!), older model pace makers (cuz you know I have one for each day of the week), wire bras (not mine I swear man)  and wigs with framing (also not mine, really), bayonets, forks, post-hole diggers, samurai swords, throwing stars, muscle cars and Sherman tanks (okay, don’t own one but want one)…

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!