98 Brain Tumors Later…

Here’s the cliff notes of what I want to say with this post to my friends with cancer, melanoma, brain tumors, myself (which is close to the number of people reading this blog), et al of you tonight, right now:

Don’t give up.

  • Even after cancer spreads through lymph nodes to liver, lungs and stomach in a few short months after diagnosis
  • Even when you get told you have 43 brain tumors and likely 6 weeks to 6 months to live
  • Even after you get unceremoniously kicked out of the clinical trial you’ve been doing, once a week, 1000 miles away, for the last six months
  • Even after 9 months of stereo-tactic surgery and immune therapy side effects gone wild
  • Even after you discover you actually had 98 brain tumors all along (not 43 tumors, this is an extreme version of a cranial “clerical error” 0-;) and “get to do” six more months of cranium drilling, tube riding radiation – yeehaw
  • Even after you to do brain surgery to remove one particularly nasty necrotic mother-bugger

Why? Because there is still a chance. There is man. Even if you are not feeling or believing that. There is a chance today. So don’t give up!

I know-I know-believe me I know- this is easier said than done. When you are in the middle of The Shat, it’s just not that easy.  In fact I drove myself all up in and around crazy town, getting confused by all the crazy town street signs, all the crazy town people and crazy words and crazy arse music, worrying about the 1098 crazy things I couldn’t control. Eventually I had to give it up. Somehow or another the lesson of worrying or getting fearful and pissed wasn’t going to make anything better.

So maybe the message is: Give up don’t give up? I guess that’s right.  Doesn’t really make a lot of sense at face value but whatever. But if we can live with other vaguely inept statements in the English language like “exact estimate”, “pretty ugly”, “only choice”, “seriously funny” or “clearly misunderstood” we should be able to accommodate “give up don’t give up” (however clunky the statement sounds).

There’s always the serenity prayer which does a pretty good job of summarizing the sentiment involved:

Lord, Grant me the serenity to
accept the things I cannot change,
Courage, to change the things I can, and
Wisdom to hide the bodies of those people
I had to kill because they pissed me off.

What a tic, that’s not it, please don’t mention that faux pas to my parole officer, case worker, psychiatrist, parents, psychologist, psychic, sponsor, friends, priest, minister, wife, kids, employer, cats, dog (especially the dog, she thinks so highly of me), here we go, sorry:

Lord, Grant me the Serenity to
accept the things I cannot change,
Courage, to change the things I can, and
Wisdom to know the difference.

And in the words of some immortal friends from another bunch of beloved crazy-pantsed people I know…’C’monnnnn Wisdom!’

PS. Am back to work after the holidays which gave me occasion – while waiting for code to compile or listening (attentively of-course) in meetings – to catch up on what’s happening in the world of melanoma research. Anyways this fairly recent summation of previous published research made me think of the above. I was reminded today of how low down I felt looking at the numbers, stats and treatment options three years ago. There was no encouraging kinds of research like this available. But, the interventions discussed in this article are in fact what I ended up pursuing:

Brain metastases, melanoma, stereotactic radiation, and nivolumab

If I can help, encourage or assist you my friends please let me know and peas be with you always.

Image result for peas be with you

Image result for peas be with you

 

 

And not huge a fan of profanity in print but, while on the subject of peas, this is funny, don’t care who you are:

Image result for peas be with you

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)…