The elephants in the room are under my skin

Since being diagnosed with Stage IV Melanoma in 2012 more than a few, well-meaning friends and family have suggested that “it isn’t your fault you got cancer.”

While there is no way to determine with absolute certainty, and I hope I’m open minded enough to consider other possibilities, I believe they are wrong.

Okay, ladies and gentleman, the elephants have entered the room. Let me begin introducing this herd of pachyderms by saying that I believe they are from Asia and not Africa.

One way to tell the difference between Africana & Cyclotis Maximus (African subspecies) and Indicus, Borneenis and Sumatranus (Asian subspecies) is by complexion.  African elephants are typically dark gray or grayish brown while those from Asia are gray, tan, red or even pink.

Anyone that knew me “back in the day” would have seen a variously tan, red or pink complexion (e.g. Asian subspecies), premiering on my skin sometime around my sophomore year of high school.

pink elephant

And some or all of you asked,

“How is that you are able to maintain such a curious, daresay un-natural (not necessarily in a good way) glow when Chicago can go 70+ monotone days with nary a sun’s ray in sight? I mean it’s nearly February what’s up with your red face boy? Opportunities for Christmas vacations in Florida have passed and Spring Break and its attendant sunshine, bottles of baby oil, other bubbly stuff, and potentially bad life choices is still weeks away?”

When the questions arose about my rutabaga complexion I evaded, deflected or ignored, drawing spiritual inspiration from Ollie North and the Iran-Contra congressional hearings,

“Mr. Senator, I have no recollection of the events in question Mr. Senator.”

And not that anyone – least of all my friends – would have whispered behind my back, but I think, if I listen carefully, I can hear faint, thirty year old echoes reverberating out of St. Ignatius College Prep’s hallowed halls…

I-know-I-know- he must be going to the, The, THE TAN…

But you were gracious enough not to call the elephant by name, to my face, and risk shattering the wooly mammoth sized ego.

Please don’t feel bad or take that last statement the wrong way.  That was neither meant to be a slight or accusation. It’s straight fact, at least from where I sit.  I had a nasty, near fatal as it turns out, case of ME and I wouldn’t have listened to you regardless.

Who knows maybe somebody did speak up, I didn’t hear it, and I don’t remember…this would only serve as further evidence of the mastodon sized “impediments to listening” of which I am speaking.

For the record and to the point, the “lobster look” I sported in high school was not due to sunshine; nor was my personalized global warming plan the result of dark-complected ancestry (unless Ireland, England and Scotland are closer to the equator than we think) or some errant and freakish genetic aberration.

I hit the tanning bed man, as you suspected. You know the fat guy with the big nose I have been alluding to here, capable of shining Spring Break up – I mean – through my window all winter long…and I invited him/tanning salons into my life willingly and with near religious zeal!

During spring break of my freshman year, after “suffering” through six months of “serious acne” on my face I discovered the power of The Tan; okay more like The Burn.  A good somewhat painful sizzling was hot enough, I found, to scorch the anchovies right off my face and I thought a pizza-topping-free complexion was note- worthy and admirable. The tanning bed, by extension, became the obvious conclusion next fall.

I mean this was the 80s right.   Billy Crystal’s Fernando Lamas impersonation on Saturday Night Live was supposed to be good comedy, but I took it as gospel, it was truly “better to look good than to feel good.” (BTW you all look marvelous out there, from where I sit tonight).

Here, we parade out the second elephant.

Some equally well-meaning people might say,“Don’t feel bad.  We didn’t really understand the potential dangers of artificial tanning back then.” 

Um, excuse me while I step over the amalgamation of bovine fecal matter (my new favorite phrase).

Whether or not “we knew” as a society, I knew.  I knew in the same way that I knew <fill in your favorite thing a teenager probably shouldn’t be doing> was wrong.  I had many internal dialogs about it in fact.  Something along the lines of and to paraphrase,

You know Leland, this tanning stuff is probably bad for you and you might get cancer.

Right now I’m picturing the responder as an elephant, Babar-like but sinister, sitting on the corner of State and Goethe, black beret tipped sideways on his wide hairless scalp, as he speaks out the side of his gaping mouth over a fistful of smoking cigarettes and wickedly sharpened tusks,

…Yeah but that won’t be until you are really old – like forty or something – and you need to look good now so who cares, we’ll deal with that later, c’mon Leland everybody’s doing it. Moohoohahaha.

Don’t be fooled by this guy.  Don’t think that we didn’t know about skin cancer in the 80s.  This was pre-internet but not pre-stupid.  I don’t know how we knew, but we, I should say, I knew.

“Okay yeah,” the final elephant of this story says, “but lots of people went to tanning beds and fried their epidermal layers in the sun back then.  I mean remember those ridiculous contraptions in the 80s…you know the ones made of silvery space blanket material in order to achieve maximum UV radiation? And what about the gang of leather skinned, alligator ladies who sat by the pool, 12 hours a day/7 days a week at the club? Not all of them wound up with skin cancer.”

These are arguments are silly and akin to wondering why our Nana, God rest her soul, never got lung cancer after seventy years and a trillion Marlboro’s. The reality is people who spend too much time in the sun or doing any other “at risk behaviors” are likely to suffer the consequences, eventually.  My guess is if Nana had smoked 70 more years eventually she would have developed lung cancer.  As a friend of mine used to say, in reference to sobriety and staying out of bars,

“If ya go to a barber shop long enough chances are you are gonna get a haircut.” 

There’s plenty of damning information out there.  Here’s some from the first site that came up while searching on the subject (www.skincancer.org):

  • Sustaining five or more sunburns in youth increases lifetime melanoma risk by 80 percent.
  • The skin of teens is thought to be more vulnerable than adults’. Teens may be especially susceptible to skin cancer because their cells are dividing and changing more rapidly than those of adults. Changes or mutations to the DNA with cells can occur as a result of damaging UAV exposure.
  • Indoor ultraviolet (UV) tanners are 74 percent more likely to develop melanoma than those who have never tanned indoors.
  • Finally, and Nana might be smiling here, studies have shown there are more skin cancer cases due to indoor tanning than lung cancer cases due to smoking (420k cases of skin cancer /year in US; 6K of which are melanoma).

In ‘The Elephant’s Child,’ Kipling retells the folktale about how elephants got their trunks.  A young elephant, bursting with curiosity, asks,

“Excuse me, please can you tell me what the crocodile eats for dinner?”

And to make a short story shorter, the nearby croc tells her,

“Sure, I’ll tell you, come closer.”

An epic tug-a-war ensues, with the lizard pulling on the elephant’s nose, stretching his snoz into a trunk and the rest is, as you can tell, history.

Perhaps this elephant analogy has stretched on long enough as well.  Either way, it’s out there now.

I hit the tanning bed as a teenager. I knew the risks.  I did it anyway.  I caused or at least put myself at risk for cancer and I get to face the full consequences, 98braintumors.com later.

If this serves as cautionary tale for someone, great.  Purpose served.

That being said, and I’ve kind of hinted around this above, I don’t think the “tanning bed” was the real problem.  I will talk about that in the future posts, more than anything because I hope my two boys will read about and understand what I’m saying later.  But for now it’s time to hit the bed- shades down of course.

Oh and in case I’ve given the impression that I’m sitting here wallowing in self-pity about any of the above, I am pasting this disturbing but somehow apropos (tangentially at least) and strangely hilarious picture of Santa catching some rays on the beach. Merry X-mas!

bad santa

Kind of makes you wish the mind had an backspace button that worked, doesn’t it?

Testing 1-2-3

Ran the Palmer Lake Reservoir trail today with E.

Beautiful day, beautiful weather, beautiful CO.

I love this dog, glad I did not take her to the pound as a puppy and she’s chosen not to chew on my throat while sleeping (yet).

oct 10 2015 018oct 10 2015 020

 

 

 

 

 

 

Listened to Papadosio @ Catskill Chill while enjoying perfect fall weather and pain free morning.  Righteousness!

It was great until we got accosted by this troll who crawled out from under his bridge/hovel/stump.Leland Troll

Wanted to know what the hay I was doing at 8000 feet with Stage IV melanoma…told him I was working on my tan man.

As to the true purpose of this particular post, I think I have Facebook and 98braintumors.com integration in place. Can now post directly to FB and comment on posts utilizing FB credentials.  Testing 1-2-3.

Its good to know my skills have not completely atrophied since becoming manager/TPS report pencil pushing guru.  Actually with the tools available there’s minimal coding, even a Lundberg like me can do it.

Gnawing on possibly deeper bones /subjects but not ready for wider consumption. Hopefully later this week.  Gotta run.

oct 10 2015 028

 

No News is No News

For those of you asking how my quarterly trip to CU Denver went, it didn’t.  They called Wednesday morning and cancelled the MRI as we were preparing to go.   Not sure what happened…

Maybe it was because last time they rented the 9.4 Tesla from University of Illinois which failed utterly to produce and the doctors didn’t want to make the same mistake again.

As I recall…

Even though the world’s most powerful MRI machine has a magnetic field three times stronger than regular clinical devices, the team of distinguished neurologists, after a few very tense, hand-wringing hours, threw up their hands and wailed in disgust while spewing their highfalutin and confusing-to-the-lay-person medical jargon,

“Like broheim we have to tell you man, we are most displeased to inform you that we are like incapable of capturing Polaroid-ifiums of your mental chrome-dome-isphere; like your snail gel is most un-copious.  We can’t even find your brain man. Where my dear are you hiding that thing? Such an uncool noodle!  And this MRI mega blows!  We are so totally bummed!”

Or maybe the machine was just flat broken and they had to call AutoZone or the Xerox guy or Doc Brown or whoever to drop ship an array of new flux capacitors and they were back ordered on Amazon and then the drones weren’t “cleared hot” for delivery to south eastern Denver so they had to send Mr.T in the A-Team van to go pick them up but they got stuck on I-25 in traffic or something.  Idiots!  They probably should have taken the toll.  Dunno.

Image result for funny picture of flux capacitor

Either way, I don’t have any news. Have not rescheduled yet but should be in the next few weeks.  As soon as there is something to share we will let you know.

Thank you for your prayers, well wishes and love.

Oh and now for my favorite Back to the Future quote, a la Doc Brown, “If my calculations are correct, when this baby hits eighty-eight miles per hour… you’re gonna see some serious $#!+.”

That said, here’s to hoping that the 9.4 Tesla, or even some skinnier version with 3 times less magnification, sees the same or even improved $#!+ between my noodle-sphere.

Peas be with you in meantime and nanu-nanu and all that and what not and whither for.

Top 8 Reasons Why Guys Who Pick their Noses Really are Smarter

So I was talking – okay whining – at the end of my post yesterday about my desire to write some Top Ten Lists so I could be cool and rightly join the other 2M bloggers on the internet.  Included was the suggestion that I had to wait until ‘everything works out’ or melanoma or ulcers or toe fungus or whatever was completely eradicated to accomplish such airy goals.

It occurred to me this morning  that was pretty lame, fueled by an insipid dose of self-pity, and well, we will just have no more of that today.  I realized too that, in the same breath, I had unknowingly provided a ‘tantalizing’ view at the end of yesterday’s post into the kinds of erudite indexes I might able to bestow upon the world.

Without further ado, the blogroll that all 28 of you who subscribed to www.98braintumors.com (potentially less after this)  have been waiting on the edge of your keyboards for…

Top 8 Reasons Why Guys Who Pick their Noses Really are Smarter

  1. Because we are already married or have girlfriends
  2. Because it relieves the pressure on our huge brains
  3. Because we don’t just talk the rhinotillexomania talk, we walk the walk
  4. Because stop lights are way too long man
  5. Because we would rather pick our own than somebody else’s
  6. Because, let’s face it, you just look more intelligent when picking a winner
  7. Because their could be gold in dem there hills
  8. Because it tastes better than licking off sleeves, under sofas, bottom of elementary school desks or back of church pews

Runner Ups:

Okay that last one is more about snot consumption rather than extraction but I couldn’t resist.

Speaking of which, I openly admit to at least giving the thought of drinking my own urine some possibly intense consideration.  Ah, cancer, what wicked webs you weave!

You will be happy to know, I hope, that I decided against it.  Did not want to risk giving that viscid secretion in my nose, consisting of mucin, epithelial cells, leukocytes, and various inorganic salts, a bad taste.  0-;

Before things get any more third grade-ish (or worse), I’ll stop now and go to bed.  And all the (28ish and falling) people said, “Yeah good idea moron.”

But first I need to take care of something…

picking nose

 

Incline on Friday, Barfing on Saturday, Clueless on Sunday

If you research how to write blogs, you will find that almost invariably one author or another recommends the use of “Top 10 Lists.” This particular medium on the internet is prolific. Inventories of things can be useful, grab your attention, and are easier to read/write. They exists for everything from “Things to do with a Glass of Water” to “Places to use when you can’t find a restroom…” Two things that are not by the way, necessarily, mutually exclusive.

Anyways, I’m itching to pen these kinds of posts and, frankly, feeling a little resentful at the moment that I don’t seem capable.

IMG_1062The first one I’d write would be something along the lines of “Top 10 Things You Should do to Defeat Ulcers” or “Seven Simple Steps for Curing Melanoma…So Simple in fact Even Your Cat Can Do It!” These speak to me. I might even pay money for the e-books; or if feeling particularly cheap and/or lazy have our cat Leo buy them and fill me later.

Like I said though, it’s not happening.  Life doesn’t seem to be fitting cleanly into the paradigm.  Case in point has been the last few days. Friday I hit the Manitou Incline with Alan (aka ‘Grandma’ aka long time running buddy and chief weekend excursion and concert conspirator).  We haven’t done something like this in a while and it was great.

For the uninitiated, the Incline is an old railway above Manitou Springs that was washed out @ 35 years ago and has since become a popular hiking destination.  It’s got something like a 70% grade in places and you climb 2000 feet in less than a mileLooking down the Manitou Springs Incline from Barr Trail Bailout.jpg…Bad-ass…if you are slightly touched in the head or looking for a unique challenge, or, maybe in my case, both.  It’s one of the few exercises I’ve done where I consistently see stars (ah like not the sky) and, at about the half way mark, I’m usually reminded of the time I told someone I was going for a run and he responded, dumbfounded, “From what Dude?”

Either way, I’m grateful to be able to do stuff, even slightly touched stuff, and despite being @ 20 minutes slower than the last time I did it 10 years ago (we reached the top on Friday in 45 minutes), it was still awesome to be out there suffering on the side of the mountain.

Yet, on the way down something was bothering me.  I’ve had ulcers along with inflammation in the stomach for the last several years. Ulcers are basically open soars in the stomach or in my case duodenum (first part of small intestine leading to jejunum, um before the ileum) and, to use more medical terms, they can really suck. I happen to have the sucky ones. They were starting to turn on full sucky power during the meandering, three or four mile run back to the car.

Thought I had handle on these, I keep/kept thinking.

If you query on the subject you will find that @ 90% of ulcers of the duodenal variety are caused by H. Pylori bacteria.  However, a biopsy of my ulcers did not demonstrate any hp.  The doctors surmised it was treatment /chemotherapy induced.  Wish it was the bacteria.  There is a clearer path to victory in that case (heavy duty antibiotics for a few weeks and antacids).

After a few ER visits, endoscopes and barrage of tests ad nauseum, supplements, Dr visits, prescriptions yah dee ya dee ya, we really thought we had this licked.  In my case, we believed, the issue was a combination of a newly developed lactose intolerance and, strangely, a lack of stomach acid.  Taking digestive enzymes for lactose along with hydrochloric acid did the trick.

Unfortunately a couple of weeks ago the pain returned.   I realized I’d slacked on the remedy described above and got back on the wagon so to speak. However, the thing is, it does not seem to be working. And the really lousy thing is, the burning almost always leads to full blown brush fire…thus the visits to the ER.  I had one of those a week ago and within the last twenty four hours.

Yesterday it started at Connor’s hockey tryouts with the imperious urge to projectile vomit in the bathroom, timed between his shifts on the ice of-course.

I guess that’s the definition of slightly obsessed, when you are slugging it out at the ice rink to watch your son play rather than home gyrating in pain.  Either way, it was worth it to have him look up at me when he was heading off the ice and nod when I gave him the thumbs up for this performance. I’m not biased or anything but what a great kid! The effort alone was worth price of admission.

Anyways, barfing turned to copious barfing at home and severe abdominal pain.  The next six to eight hours were, as mentioned, kind of sucky.  Thanks to some prescription nausea meds (again, thanks Alan) things finally calmed down and I did not have to go the hospital.  We were to down the wire though…I was giving it a another hour before limping to the ER.

So, here I am, Sunday evening, typing this blog, feeling slightly shell shocked, wondering what to say while scrapping the rusty, dried up bottom of the barrel of faith…wishing I could summarize “it all” cleanly into a neat, attention grabbing and snappy list.

The only thing that comes to mind is that I’ve been through other ups and downs before; and, as much as the temptation is to think otherwise, there’s always an up.

What Grandma said on Friday during our slow ramble up the incline seems perhaps most appropriate,

“Everything works out in the end…so if it hasn’t worked out yet, it isn’t the end.”  

When it does you’ll find it here, next to “Top 8 Reasons Why Guys Who Pick their Noses Really are Smarter.”

Answers

I’m playing hooky from work for a few days this week.  Would like to tell you that I’m taking this time to devote to a series of productive and extremely manly honey-dos but, chances are and knowing me, most of that time will actually be spent committing honey don’ts or their wicked step cousins, oh-no-you-didn’ts.

Speaking of which, Elsa decided to take me for a run this morning. I guess she thought I needed it.  Didn’t sleep much last night and was feeling a bit, persnickety. Have been “dealing” with ulcers as a byproduct of previous immunotherapies as well as current keytruda regimen. It felt like I stopped by the grill in the backyard and swallowed a few hot coals on the way to bed.  Running usually helps relieve and/or remove the pain when I’m symptomatic. Waa-waa-waa.

So off we went to the Mt Herman Trailhead, which is a confusing name for the path that actually does not take you to the top of Mt Herman; rather meanders around its foothills through a dense pine forest, pond, and Monument Rock (picture). I usually do a loop that is basically uphill for the first half.

It was during the last bit of climbing that I ran into a couple of guys mountain biking.  They had stopped at the the “top” or the highest part of this particular route to catch their breath, grab some water, take in the view, or perhaps watch me, Thunder Cat, crawl his way to the top.

We struck up a conversation (they talked, I gasped) and because I’m kind of on a evangelistic tear right now I happened to mention, in reference to my breathing, “Yeah not too bad for a guy diagnosed with Stage IV terminal cancer and 98 brain tumors a few years ago…”

There’s probably – okay probably maybe certainly – an element of crow going on here.  Boasting or not, this is a story I feel the need to share these days.  Not sure I care to perform any further self examination on the subject beyond that, at the moment.

The thing is though, if I’m going to take the talk from run-of-the-mill, trail based pleasantries like ‘ha ya doin’ and ‘beautiful day isn’t it’ or even ‘that last part kind of sucked,’ to deeper topics of cancer and survival, then I better be prepared for heavier caliber conversation.

“Mind if I ask how your relationship with God is?”  One the guys asked.

My instant reaction was to think, ‘Huh? I don’t know.’ 

But that’s not really how you are supposed to respond in that situation right?  Not when you have been sober 24 years and regularly swear in a room full of your peers, “it’s only by the grace of God”; or faced with a life threatening illness find yourself alive and saying, “Thanks be to God.”

So instead, I answered the question by not answering the question, “Well, I go to church…”

The truth is, in relation to my belief, some days are better than others.  There are a lot of moments when I feel the opposite of “sure” about anything. I’m barely making it up the trail let alone feeling confident about life, God, me, you, us, them, the Cubs chances this year…

Here I can hear the gruff voices of a few old guys with the inflated spare tires around their waists (aka “boomer bellies”) and steaming Styrofoam cups of coffee in their hands.  Their talking to me in cliches, derivatives of,

“The older you get the more you realize how little you know.”

Or,

“The only thing I know is that I know only a little.”

And I relate.

Oh well, guess it could be worse.  Perhaps the fact that these statements ring true- combined with my own expanding waist line – means I’m getting older.  Older = good. (-;

PS. Elsa was not working on ulcers but she definitely succeeded in wearing herself out.

Worn out

Or maybe it was the after breakfast snack she had on the trail?

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.

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.

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)…

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.” (-;