Outed on Facebook

Well, some things never change I guess.  My brother broke, I mean, got wind of this little project and he told on me, again, to my Mommy no less and to Facebook.

In my typical nerdy and some would say “controlling” way (only the jealous ones say that though), I’ve been hacking away for the last couple of weeks, keeping 98braintumors super top secret (except for like registering the public domain, adding a few posts etc).

Though I have to say it did get a bit creepy the other night when 15-20 “people” registered their “usernames” here.  I wondered if my SEO (search engine optimizations) were really that good?  Had I applied the right tags, using the right words, to my few meager posts?  Was adding my xml based site map to “The Google” so effective as to bring legions of new subscribers to my door? Er, no.

Turns out it was Boris or Sven or somebody’s web crawling software who found my site and auto-registered so that – I assume – they could start serving spam to the universe.

So, if your spam filter recently picked up email from 43bigfool1@98braintumors.com or buttaholla2020g@98braintumors.com offering “Free Russian Brides” or “The Diet Pill that Dunkin Doughnuts Doesn’t Want You to Know About…” it wasn’t me (btw the bots are no longer allowed to register and their suspect usernames have been purged).

The “truth is” I probably would still be hacking a year from now if the Gibster/my brother hadn’t ratted me out.    So thanks G, thanks a lot man, now there’s like 10 people that know about this.  Anyways, if you are here, welcome and thanks for reading.  I hope my story is of use to you.

xoxoxoxoxo

Leland

PS. I added a photo album tonight (should be on menu bar, entitled “Pics”) and, of all things, a few pictures.  So now you know I’m actually a real person, my name isn’t  43bigfool1 or buttaholla2020g and, at least for the moment, there are no Russian beauties or snake oils sold at bargain basement prices here.

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CT/PET Scans

What’s it’s like to have a CT/PET Scan?

I’ve been shoved into one CT/PET box so many times at Memorial North in Colorado Springs I’m thinking about scratching “Leland was here” on the walls.  This combined procedure is par for the course in ongoing cancer care follow ups.  Here are some of my thoughts and experiences on the subject.

First off:

  • C-T (CAT) and PET (Positron Emission Tomography) Scans are often done together
  • Referred to commonly as just CT/PET scans.
  • IT DOESN’T HURT
  • IT’S PRETTY QUICK (15-30 mins)

The worst parts are:

  • Lying still
  • Drinking the contrast
    • You have to pick up a bottle from hospital prior to procedure
    • Drink 16 “ouncer” 2 hours prior to scan
    • Drink other half 16 ounces an hour before the scan
    • Guzzle the remaining half when you get to facility
    • The stuff is nasty, seriously nasty, strong gag worthiness, serious contender for all time greatest barf awards
      • Thick, chalky, steely choke on your choice of pseudo fruity flavor stuff
      • Don’t be fooled by clever names on bottle…”Berry Berry,” ha!

There is an infusion after a few minutes:

  • The infusion always gives me a “pee-pee-in-my-pants-feeling-sensation” (to use a technical description)
    • Of-course the infusion requires getting an IV
      • Seems like every medical procedure – ad infinitum – requires an a @#$$%! IV!!!
      • Can’t underscore the importance of a skilled technician when it comes to poking me with a needle
      • The skill level is really the difference between a relatively mild prick and repeats, new pokes, more bruises, blaming you for your “rubbery veins”, or returning to work and people suspecting – based on the track marks on your arm – you decided to go with heroin for lunch
    • Here I learned, though not perhaps comfortable, it is okay to suggest hopefully in a kind and understanding way, that the technician get someone else to do the stabbing if he or she is having trouble with my rubbery veins
    • The other thing you can do is make sure you are well hydrated before procedure which will help the technicians in getting a good vien

And finally my recurring “40 Year Old Virgin moment

  • That’s because I have hair on my arms, am an ape man/teen wolf
  • When they yank the thick strip of tape holding the IV off my arm, invariably I vow to go 100% Powder (remember that weird little movie from 90s?)
  • Even worse is they do an EKG on the chest hair
    • This is why every nurse/tech should have a razor in toolkit to shave you up
    • I’m starting a movement, “Save the body follicles” campaign
    • We’re gonna crowd fund this baby and change the world!

Additional Notes on C-T/PET Scans:

C-T or CAT scans are essentially a series of X-rays captured in “slices” through the body.

  • This is not quite as terrifying as the book of real human slices at The Museum of Science of Industry in Chicago.
    • That used to seriously weird me out as a kid.
      • A man and woman in the 40’s bodies were frozen solid, power sawed into 1/2 inch sections, and set in sheets of glass.
    • I don’t think they are still exhibited in book format but are “portraits” on wall or something equally capable of giving me nightmares as adult.
  • Alas, I digress…

The digital CT slices are analyzed by software.

  • The resulting images can indicate things like location, shape, and density of tumors
    • But have limitations in finding smaller tumors (less than 2m).
    • So here’s where the combination of PET with CAT make good/is a good idea.
      • PETs detect variations in metabolic and chemical activity in the body using positively charged particles.
      • Areas with increased metabolic activity show up as colored images.
        • Since cancer cells divide more rapidly than the good guys /normal cells, they present with higher metabolic activity.
  • In this way PETs identify small areas (smaller than CTs or even MRIs for that matter).

I hope there is no evidence of disease on your scans.

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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)…

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Energy and Exhaustion

Grateful for Busy Weekends

Last weekend I coached two hockey games and a practice, ran 3 miles in the mountains with my dog Elsa, lifted weights, did one of Shaun T’s “Max Out 30” videos (with window shades tightly drawn in living room, chasing away images of 80’s era Jane Fondas in purple spandex and candy-cane-striped-leggings doing squats across the back of my eyelids), worked on this blog, threw the football for my two boys for a couple of hours, bounced on the trampoline with them, mowed the backyard, helped my wife in entertaining @ 25 people from our church Saturday night,  and hit our bible study Sunday (another minor miracle)…not too bad for a guy diagnosed with Stage IV melanoma and who, for most of my life, has struggled with some serious fatigue issues.

Hopefully that last paragraph is not in poor taste or comes off as arrogant or boastful.  The purpose of www.98brainturmors.com is to offer people with cancer, even a terrible prognosis like mine, hope. I’m grateful for the ability to be a part of weekends such as these. While I can’t predict what the future holds for myself or anyone else for that matter, it’s been a gift to go from a six week prognosis to three more years with friends and family!

Even before I was diagnosed with Stage IV melanoma, I struggled mightily with feeling tired.  I remember, especially after my kids were born, feeling so tired it physically hurt, despite a near constant infusion of coffee on a fast drip.  Our good buddy Scotty pretty much summarized how I felt for an eternity…um, since childhood. I wondered if it would ever end.

From http://blogs.emulex.com/lenovo/files/2014/12/scotty.jpg

Things to try if you are feeling tired

Why am I writing about this? What’s changed?  I can tell you that I got much more serious about energy, or my lack thereof, once I got sick.  I can also tell you that, at least for me, this problem was not “solved” overnight.

“Solved” is tagged in quotes because this is still something I struggle with…though, as mentioned, I feel like it has significantly improved over the last few years.  I think, in most cases, the answer to the energy/exhaustion problem will defy a headlong assault, is more complicated than just finding a single cause (at least in my case) and is not something I could wake up one morning and give myself a good Foghorn Leghorn talking to, “Boy I say-I say I do declare today you shall have more energy.”

But here are some things I did, either intentionally or by stumbling my way into them, over the course of treatment.  Again this is, as with anything on this site, not medical advice.

Get worked up

Got a complete workup of labs (blood work) done by doctor as well as medical practitioner.  Had them review the whole thing and see if there were any deficiencies.

Note that I’m not anti-doctor by any means, but I have noticed a tendency, at least with some of the doctors I have seen, to either discard or downplay vitamin and mineral deficiencies. I’m not sure if this was my lack of assertiveness in stating the problem, their busy schedule/time allotted for me (or both), or as the more paranoid among us might suggest their over-reliance on the western medical doctrine and practice…pick your poison.

I would recommend making it known if you are really struggling that you need help, that it might take more than one test or course of action, and you would hope that he/she will help you resolve this problem. Given this kind of sincere plea for assistance, they should roll up the sleeves.  If they don’t, exercise your right to find someone that will.  This is what I did. In my case, after some serious whining/asserting myself and a change in doctors, I got worked up.

Vitamin D

One of the things we found was a serious vitamin D deficiency.  This is pretty common for people in general and not just cancer patients.  BTW…this is a little curious for over baked, extra crispy melanoma suffer like myself don’t you think? 0-;

You can google for studies, anecdotal evidence, rants, and pseudo-science about the role of V-D and cancer. I’ve been taking 5,000 IU/day of Vitamin D-3 for a few years now.  I also don’t – against what many people advise – necessarily avoid the sun.  We need it for V-D as well.

I vant to check your blood

Another thing that occurred over the last few years is that I gradually became more and more anemic (had a reducing red blood cell count) and iron deficient. Here I was told it would be good to rule out internal bleeding; that sometimes bleeding lesions or tumors don’t show up on the normal C-T/PET scans.

That equated to an endoscopy or check down esophagus, stomach and small intestine as well a journey, um, through the other “end.” In both cases I was found to be free and clear – no lesions and no vampires hiding out in plumbing (seems to be a Sesame Street thing going on here now…guess that’s about right/my level).

What did happen as a result of the anemia was I started taking an iron supplement (there are various ‘blood building’ supplements at health food store) as well as B complex.

I have to say, of all the things mentioned here, the blood builder and B complex combo seems to have given me the most jump; even during that 3 o’clock – oh Lord why can’t we practice the art of the siesta in this country – hour, I rarely feel the need to crash out anymore.

Thyroid Disorders

Got my thyroid checked. This is something I believe anybody that is receiving immunotherapy should have regularly monitored. I can’t say for sure if my thyroid was always messed up (to use medical terminology), but I can tell you after a full course of yervoy, I finally had mine looked at…and it was bad, as in out of whack, as in essentially not working.

Okay, guilty as charged, I don’t have a copy of the labs. The University of Colorado app I use that has previous medical records doesn’t have it listed in there for whatever reason. Sometime in 2013 we figured out that my Tsh level had a value of like 190 where normal ranges are @.45 -4.680.

Needless to say I remember feeling a bit “put out” at the time. Just tying my shoes or, heaven forbid, hanging a towel instead of tossing on floor seemed like a major ordeal. My wife now thanks the decision to treat my thyroid accordingly and the towels generally smell better, longer as a result.

In relation to melanoma and thyroid, a particular paper written by Jacob Schor comes to mind.  Schor cites studies which appeared to show Tsh as a growth factor for melanoma. Its an interesting read, as all Dr. Schor’s writings are, in case you are interested- melanoma and thyroid.

Diet

Okay is there some cruel irony that the word “die” is embedded in diet? I could spend a lot of time writing about this but I won’t. There’s plenty of passionate debate around this subject everywhere…just know that I haven’t eaten any meat or had any processed or refined sugar (that I know of or willfully/sometimes these things are embedded in restaurant food or prepared meals) in three years. NONE nada nawching.

People often ask me, “how do you do it?” and I always say it was relatively easy.  Despite a serious, bordering on professional appreciation for The Immortal Cheeseburger and all things greasy, meaty, cheesy, salty, fatty, sugary etc.

Every time I feel the need to exercise my addiction I think about my boys, my wife, 98 brain tumors, tumors in the lungs, stomach, liver …along with a mountain of anecdotal and scientific studies “out there” that suggest reducing or eliminating both might help me live a little while longer…and if and when I find myself in the afterlife, I’m hitting Red Robin, hold the lettuce and tomato.

Pray

I finally remembered to pray about exhaustion. For those of you that make a habit of prayer already you may be able to relate to the fact that there are times where you/I can struggle with something for years and seem to make no progress.

Then I suddenly realize something important and say to myself (out loud in the car, with people looking strangely at me at which time I pretend to be talking on phone or maybe totally throw them off with a good pick of nose), “Ah, maybe I should pray about this?”

In the back my mind, tucked behind Jane Fonda doing her leg lifts, I can then hear Curly Howard (Larry, Moe and Curly) saying, “Nyuck, Nyuck, Nyuck…ah wise guy!”

Prayer is the most unscientific-scientific thing that I’ve done/do of all the ideas mentioned above. In my case, unfailingly, whenever I do this and try to combine it with an open mind things work out…even energy problems, bad blood or vitamin deficiencies. It just happens, it has no real logical explanation, taunts the ever loving engineer out of me, but just is. As a book I’ve read a few times says, “It works, it really does.”

Final Thoughts

Yep I’ve had the “luxury” of thinking, “What the hay man, might as well throw the kitchen sink and everything else at this, can’t hurt.”  This afforded me every excuse and lots of motivation to try different things.  I could, in fact, write even more about what I have done “wrong” or what didn’t work for my exhaustion.

But the disadvantage, of-course, of throwing the kitchen sink at a problem is I can’t pinpoint one clear cause/effect relationship that led to my being less exhausted. Either way I hope that some or all of the above might help you dig through your own experience and find answers to your struggles with energy and exhaustion.

Oh and full disclosure…I did take a glorious, Leland-pleasing nap last Sunday afternoon even though I didn’t absolutely have to…there’s nothing I quite enjoy more than a snooze on the couch by the fireplace, listening to the boys and Sarah play “Monopoly” or “Clue.” (-;

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Gamma Knife Procedures

Gamma Knife is stereotactic radiosurgery or a type of treatment that uses beams of radiation to destroy tumors of the brain, head, and neck. As I’ve “bragged” before I’ve had 99 zaps from the Gamma Knife to treat and, for one particularly stubborn lesion, retreat the 98 melanoma tumors that set up businesses in my brain.

When I talk about the 99 I always want to work in a Jay-Z reference:

  • 99 treatments but a brain ain’t one – huh?
  • 99 treatments but I’m still having fun – true but…
  • 99 treatments but still as dumb – most appropriate.
  • Nothing quite flows…leaves me wanting…

Anyways, despite the cool fact that they don’t have to crack your head open (unlike brain surgery…I have had that too, this is much better)…this hurts and is scary (for me anyways, but I’m sure you can handle it!).

And I have to admit I was surprised when they attached the cage to my head the first time. Dr. Breeze at Univ of Co probably told me but I must have must have done my best to repress it. Okay the cage is actually referred to as a frame (cage sounds more dramatic though don’t you think?).

  • The cage is attached with four screws and the resulting contraption is locked in place
    • A helmet is placed over that
    • This contraption ensures immobilization so that the machine can hit the exact position of the lesions
    • Machine may also adjust the position of your head for this purpose during procedure
    • Beams travel through tiny holes in helmet
  • You lay flat on back, in narrow tube
  • It’s very quiet but you can choose to have music pumped in
    • Recommend you BYO Phone /mp3 player/8-track if you are Starsky or Hutch

They’ll give you a local anesthetic but still hurts (maybe/likely I’m just a wimp)

  • The sessions can be long, depending on how many being treated
  • If you only have a couple you will likely be done in 30 mins
    • Not in my case

I have also “bragged” before about setting the US/EUK record for time in the machine (4.5+ hours)

  • Getting the frame off is welcome relief, that old Tum’s commercial/slogan, How do you spell relief? comes to mind
    • Especially as the anesthetics and whatever else they gave me wears thin by the end of the procedure
  • Have not tried running any marathons or perform strenuous activities for rest of the day…yet
  • Almost always a) hit Chipotle b) Take nap
  • There’s usually swelling where the screws went in
  • There can also be swelling in areas of brain treated
    • I fortunately have not had to deal with that
  • Back to “normal” the next day
    • Dangit!  I keep asking them to make me an accidental savant but Breeze has not complied
      • You know suddenly and inexplicable able to play Mozart with my ten toes while simultaneously speed reading a novel while reciting the birth and death years of every US president …something equally useful and savant-ish like that…

More Notes on GAMMA:

  • Dr. Breeze told me that my 4.5 hours in machine is nothing compared to Japan where I was told they often go for marathon, round the clock sessions
    • The Japanese are supposedly how they know when neurological deficits statistically set in
    • The magic number is 100 or more
    • So I’m still below the cut though you probably can’t tell 0-;
    • Praying we do not have to test those limits further
    • Unfortunately the efficacy of treatment can’t be determined right away…eg how well the procedure worked will be assessed in weeks/months to come.
    • That being said, I wish you and your family tremendous success in this regard!
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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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