Part Five

Good morning, fans.  Time for more cheery news from the UNM Cancer Center – which actually is kind of a cheery place, if you ignore all the sick people.  I thought of re-naming the blog "Topic of Cancer," a bad pun that would allude to my literary pretensions in this effort, but thought better of it.  You're welcome.

I'm midway through my second week of cancer treatment.  This includes radiation treatment five days a week and chemotherapy seven days a week.  The chemo is self-administered via two big pills I take at bedtime every night, preceded by anti-nausea drug I take about a half hour before the chemo pills.  The nausea and a general ebbing of my energy levels are the only side effects I've noticed thus far.  (Still have that full bushy mane, gals!)  On the first morning of my first chemo dose the night before, I went out for a stroll on my regular route through a nearby arroyo.

Editor's Note:

ar·roy·o  [uh-roi-oh]

noun, plural ar·roy·os.

(chiefly in southwest U.S.) a small steep-sided watercourse or gulch with a nearly flat floor: usually dry except after heavy rains.

There are two paths I take through this arroyo: a short one of about 3 miles or so that takes about a half hour or so to walk and a longer one that takes maybe 45 minutes.  This particular morning I was strolling the shorter route, not knowing what effects to expect from last night's chemo dose.  I was accompanied on the trip by that morning's digest of the N.Y. Times playing on my Samsung phone via Audible.com.

A brief word about this Audible.com, which is so cool I like to tell people about it.  This is a subscription that gives me one audiobook and one audio newspaper or magazine per month for $15/mo.  Not for everyone, but perfect for someone like me who travels a lot and spends many hours behind the wheel.  A couple of years ago this company Audible was purchased by Amazon, who has done some cool things with the service.  One of them is to let you add on the Audible version of a Kindle book you buy for a few bucks extra, and vice-versa.  What's extra-cool about that is this: say I'm driving all day and listening to an audiobook, then later I'm in my hotel room and I want to read the same book on my Kindle.  When I open up the Kindle book, it syncs automatically to the exact spot I left off in the audiobook.  And it also does the same thing in the opposite direction the next time I start up the audiobook.

Sorry, that just geeks me out.  It's what I expect from Amazon, who is always two steps ahead of everyone else.  But the real reason I love that company is that I have never experienced better customer service than that company provides – a rarity among U.S. businesses.

Enough already about effing Amazon – we want to talk about tumors!  So I'm about halfway through my leisurely stroll through the arroyo, when here comes this morning's breakfast back up for a visit!  It was just coffee and a USANA nutritional shake, but now it is decorating a pretty bush in the arroyo.  So after I get back I look over the two anti-nausea meds my oncologist prescribed.  One is called Prochlorperazine, which is the one the oncologist told me to take unless I need something stronger.  The other one is called Zofran (sounds like a Marvel Comics villain), which I guess is stronger but also more expensive.  I have a limited supply of this based on what Blue Cross would cover, so I'm using the first one for now.

So after a few more episodes of  la nausée, (not the Jean-Paul Sarte novel), I started popping the Prochlorperazine right before bedtime and when I get up.  This seems to work, tho it saps my energy big-time – or maybe that's the Temador doing the talking.

Temador is the chemo drug I'm taking – also called Temozolomide.  My dosage is 165 mg per day, so I have to take two pills to boost the regular 140 mg capsule up to the prescribed dosage.  One of the other effects is it knocks me out pretty good.  I still get up several times during the night for my nocturnal rest stops, but instead of wandering about the house I just head straight back to the sack and conk out again.  So between the Temodar and taking the nausea med as soon as the sun comes up, I'm getting plenty of sleep.

Then there's the daily fun of radiation treatments.  The radiation techs have this routine so down that it's like watching an Indy pit crew at work, and I'm usually out of there in about 15 minutes.  I already gave you a basic course in the science of all this in the last blog installment.  After I get strapped down inside my radiation mask (which, btw, might cause problems for any claustrophobic folks out there), the actual treatment lasts about 5-10 minutes, which includes me getting zapped about a half dozen times in each of about half a dozen places, which are all pretty close to each other.  I'll try to get a more accurate count in my next session.  I don't think I can feel it, but my scalp does feel some burning sensations throughout the day afterward.  The radiation machine makes a weird noise; kind of like a squeaking door, but it's like what you'd expect that door opening and closing at the beginning of The Twilight Zone to sound like.

On Friday I have my first interview with the UNM Center for Life.  To explain what this is, I'll quote from the "mission statement" on its web site:

To provide customer-oriented, preventative services and medical care in a healing environment by integrating the highest standards of conventional and complementary medicine, and nurturing the intrinsic healing in the whole person – body, mind, and spirit.

 Sounds right up my alley, doesn't it?  Hey, I'll try anything – even some witch doctor recommended by a friend, who's going to cure me long distance over a cell phone line!

Seriously tho, this UNM clinic and its director, Dr. Arti Prasad, come highly recommended and I'm looking forward to the appointment, which aren't easy to get.

OK, now where did I put that application for my New Mexico medical marijuana card?

Look Ma, no scar! (Almost)

Part Four

On Monday I had an appointment with the radiation oncologist to plan my radiation treatment.  Actually it was with some techs to get the whole thing set up in what they called a "simulation."

Basically, it was all about first immobilizing my head and then taking a bunch of CT scans for the radiation oncologist to use to map out where the radiation is going to go.  

First they set me up in front of the CT scan machine.  Then the tech mixes up this goop to make a mold behind my head to lock it into position.  Then they drop this net on my face that they melt and form to my face.

Here's what it looks like pre-"melted."

Radiation Therapy Head Mask

Get the point?  Moving while radiation is happening to your head is very, very bad.

Once they have me locked down solid, the techs head out of the room and I head into the Computed Tomography Scanner (CT scan to you) for lots of pictures.

Computed Tomography Scanner

All of this prep work is done to get me ready for the big show: External Beam Radiation Therapy, most often delivered in the form of photon beams (either x-rays or gamma rays). A photon is the basic unit of light and other forms of electromagnetic radiation. It's a little bundle of energy, and the amount of energy in a photon can vary. The photons in gamma rays have the highest energy, followed by the photons in x-rays.

Many types of external-beam radiation therapy are delivered using a machine called a linear accelerator (also called a LINAC). A LINAC uses electricity to form a stream of fast-moving subatomic particles. This creates high-energy radiation that is used to treat cancer.

Linear Accelerator (LINAC) used for External-Beam Radiation Therapy

One of the most common types of external-beam radiation therapy is called 3-dimensional conformal radiation therapy (3D-CRT). 3D-CRT uses very sophisticated computer software and advanced treatment machines to deliver radiation to very precisely shaped target areas.

This is what I think I'm getting. There are a whole bunch of other technologies, but my inner Poindexter will cut you some slack now.  It's actually a pretty scary procedure.  Lots of things can go wrong while head is getting zapped.

Next Monday I meet with the medical oncologist and go over the exact treatment I'm getting with him.  On Tuesday it's Showtime, unless they decide they're not happy with everything in the set-up and feel the need to tweak it a bit.

It's OK with me if that happens.  I'll take another delay over a tin cup and some pencils.  Back at ya in a week or so, fans.

Part Three

Good morning, fans.  Hope you're having a great weekend!  Let's see if I can't wreck a little of it for you.

Spent about 5 hours at the UNM Cancer Center on Friday.  It's a beautiful $100 million facility that opened in 2009.  Best place to have cancer in New Mexico . . . gardens, meditation rooms, sculptures . . . and lots of sick people.

I must say the treatment I received was first class all the way.  I had a "personal navigator" named James LaCour who was with me all day:  giving me a tour of the place, dropping me off at and picking me up from appointments, handling all the scheduling, ordering prescriptions for me; basically facilitating everything.  He was muy fantastico and I was suitably impressed by the experience – especially after my less-than-wonderful experience at UNM Hospital.

Met with the two docs who will oversee my treatment.  Both of them are Asian guys named Dr. Lee.  One is a radiation oncologist and the other is a medical oncologist (the chemo guy).  Both seem very smart and personable, especially the medical oncologist, whom I think is a little higher up in the hospital pecking order and seems to be the top guy in my deal.  He took a lot of time with me, even though I know he was slammed and had moved my appointment up from Monday to see me on Friday.  We talked about some different treatments, stuff that's been tried and its results, a trial that was recently closed down, and what my treatment is going to be.

And that is this: daily radiation 5 days a week for 6 weeks, plus simultaneous daily chemo administered orally 7 days a week during the same period.  After that I get a month off, then it's back to the MRI's and whatever to check out how well the treatment is working.

I was shown this weird net-like plastic mask that will go over my face and somehow mold to it (like in ALIEN) while I'm getting blasted to protect non-cancerous areas from the radiation.  Then it comes off and I get to take it home if I want to.  This is intriguing . . . perhaps I can make Steve Bliss masks available to you at a nominal fee to help defray the cost of my treatment.  I have no doubt you'll all want one.

It was good to have real conversations with real doctors to understand what's up with my big fat GC.  Up until now, I've tried to keep this blog as light as I can through the first two parts, but I'm going to share a little more info with you now.  If it's more than you care to know, it's OK to stop reading now.

Most of this info is lifted from the National Brain Tumor Society web site at www.braintumor.org.  My tumor is called a Glioblastoma multiforme (GBM).  It is the most common and deadliest of malignant primary brain tumors in adults and is one of a group of tumors referred to as gliomas.  Classified as a Grade IV (most serious) astrocytoma, GBM develops primarily in the cerebral hemispheres (like mine) but can develop in other parts of the brain, brain stem, or spinal cord.

Because of its lethalness, GBM was selected as the first brain tumor to be sequenced as part of The Cancer Genome Atlas, a national effort to map the genomes of the many types of cancer. In this effort, researchers discovered that GBM has four distinct genetic sub-types that respond differently to aggressive therapies, making treatment extremely difficult and challenging.

Its incidence (number of new diagnoses made annually) is 2 to 3 per 100,000 people in the United States and Europe. GBM accounts for 12% to 15% of all intracranial tumors and 50% to 60% of astrocytic tumors.

Gosh, aren't I special?  Now the bottom line: survival stats!  Median survival rate is about 15 months.  Five-year survival rate is about 4%.

Damn, I better get cracking on that screenplay!  OK, now let me temper this grim reaper news a little.  Those median rates are skewed a LOT by people in their 70's and 80's and older getting this and dropping dead within a month or two.  I happen to be on the young end of folks who acquire this bad little mofo.  So there is more than a little hope for that survival rate to stretch longer than that 15 months in my case.  More time for medical research to catch up with my little GBM monster.

Going back to the Cancer Center on Monday for some more MRI's, then one more week for the noggin to finish up healing all nice before I start getting blasted on Mon 8/19.  Glad to delay treatment by that one week, because my wonderful old friends Ken, Lori, and Adam Keibler will be paying a visit on Sat-Sun 8/17-18!  Then our equally wonderful friends Mike & Sue McNeil will be visiting Labor Day Weekend!  The margaritas will be flowing poolside non-stop!  And of course we had a great weekend with big brother Russ last weekend.

Now THAT'S the kind of medicine Papa likes!  Looking forward to seeing all your smiling faces in the coming years . . . and decades . . . .

GOODBYE AMIGOS!  SEE YOU SOON!  HAHA!

Brain Tumor - Top of Head

Brain Tumor - Rear of Head

Part Two

Thanks to all who read and commented on my first-ever blog.  I hope the multiple emails you received about it as I stumbled to figure out both Blogger and Google + were not too annoying.  I'm still figuring out the best method of writing it, posting it, and letting you know about it.  Try to make this one a little briefer.

In my first post I wrote about discovering I had a brain tumor and scheduling and completing the surgery to remove it.  The tumor removed is called a Glioblastoma brain tumor with a malignancy rating of class IV, which is the highest.  I am now waiting for my noggin to heal completely so the next stage of treatment can begin.  This will involve some combination of radiation and chemotherapy.  My first consultation with a radiation oncologist to discuss treatment is scheduled for Friday, Aug. 9.  I got that moved up from its original date of Wednesday, Aug. 14.  I'm still trying to move up my other appointment with a medical oncologist up from Monday, Aug.12, so I can get the ball rolling on both docs this week instead of next week.

10 days after surgery I returned to UNM Hospital to get my surgical staples removed.  This day was pretty much a low point in my experience with UNM-H.  First, getting those staples yanked out of my scalp is not an experience I'll be recommending to any of you soon.  It was enough to make me pop a couple of Oxys for the first time since a few days after the surgery, but it was Tylenol-tolerable by the next day.

Second, I guess my expectation that I'd be seeing my doctor that day and learning more about the future of this thing was unreasonable.  Didn't seem so to me, but I guess it was.  What happened is that a nurse practitioner comes in, yanks the staples out of my head, then hands me a yellow carbon copy of a UNM diagnostic report.  It has the words "Glioblastoma WHO (World Health Org) Grade IV" scribbled in barely legible doctor writing at the top of the page, and nothing else on the page except my two appts with oncologists over 3 weeks away scribbled at the bottom of the page.

I look at the NP in bewilderment and ask her, that's it?  OK, what time is my doctor coming in to tell me what all this means?  Her response is the classic blank stare we all know and love.  So I ask the NP to go find my doctor so I can ask some questions.  She disappears for about 15 minutes and the re-appears to tell me the doctor can see me in about 90 minutes.  Of course I immediately translate to 3 hours, so Pam and I just pack up my aching head and my ignorance and walk out.

Over the next couple of days I make several calls to various gatekeepers, stonewallers, and other automatons in attempts to become a little more informed about my disease and the next steps to treat it.  I want to know what's in store for me next (sorry, never had cancer before) and why I'm not seeing anyone for at least another three weeks, which, BTW, is AFTER my disability time off from work expires.  (It's OK, I was eligible for plenty more time and have already extended it.)  Of course these efforts generate no useful info and I get sick of calling, natch.

However, things have ways of working out sometimes, even for (or maybe especially for) obnoxious dickheads like your blog author.  What happens next is not really that unusual, if you believe in regular visitations from angels.

Pam and I met a couple named Nito and April a few years ago and developed a somewhat unlikely friendship.  Now this guy Nito is nothing less than a certified genius, and he was working as a microbiology professor at UNM when we met.  Both he and April are the sweetest people you ever met, and they have a beautiful boy and girl who are maybe 7 and 10 (?)  They met in Madison, WI where they both went to college and then later moved to ABQ and started a family when Nito got the UNM gig. Both Nito and April are athletic people who love to run, hike, climb -- and play squash and racquetball until their arms fall off.  How we met was that Nito was teaching a step aerobics class at the best health and racquet club in ABQ, called New Mexico Sports & Wellness, which he did only to get a free membership for him and his family.  Pam was in the class and they became friendly.  I was working at the club as a corporate membership rep and we all became friends.  Let's face it: if I didn't have Pam around I wouldn't have any friends . . . one of the many reasons I love and need her so.  Earlier this year, Nito was approached by Tulane Univ with an offer he couldn't turn down, so the entire family packed up and moved to NOLA.  The family was not happy about the move -- esp April, who LOVES New Mexico -- but ya gotta do what ya gotta do, right?

OK, back to me and my cancer.  I get a call one day from Nito, checking in on me to see how I'm doing.  We have a nice chat, at the end of which I bitch a little about my frustration with the level of info I'm getting from UNM-H and the Cancer Center.  Nito responds: "Well you know . . . the Director of the UNM Cancer Center is an old friend of mine.  Let me make a call or two and see if I can help you out a little."

WHAM!  Two days later I am besieged by emails and phone calls from the UNM Cancer Center Director and her various minions, requesting the opportunity to serve my every need.  A really nice guy calls me, gives me his cell # and tells me to call or text him day or night -- and he has never failed to answer.  Needless to say, my relationship with the UNM Cancer Center has turned a big 180, I have the appts dates and times I wanted, and all systems are go for the next stage of treatment to get going shortly.

My Man Nito!  Getting it done Chicago-style!  Big payback coming your way for this major solid, my brother!

That's pretty much the whole cancer story up til now.  By this weekend I'll know what the immediate future holds.  Thanks for your interest and support.  Riding the Love Train with you all to the big happy ending!

Part One

Look, Ma, I'm blogging!  I must have extra time on my hands to be doing this.  Been curious about this for a while.  What is blogging all about anyway?

1. The resurrection of the obsolete practice of correspondence and letters.
2. A legitimate form of information dissemination.
3. Mere opinionating and little else.
4. A valuable tool for maintaining relationships.
5. Shameless self-aggrandizement / public masturbation.
6. All of the above?

In any event, I'm going to try it and see of it goes anywhere.  All of you know that I am a shy and retiring person, for whom expressing any thoughts or opinions is difficult hurdle to overcome.  You know this as well as you are familiar with the many Chicago Cubs world championships we have celebrated together.

So this is a practice round to discover if (a) I enjoy doing this and (b) if anyone else finds it interesting, or if I'm just talking to myself, which would be far from the first time.  The title I've chosen for Blog #1 gives you a fair idea of what's coming.  Sorry, I guess half of everyone who catches the Big C gets told to do this kind of crap as part of the recovery process or whatever.  That's not really what I'm doing here tho . . . I'm just practicing on Blogger and I thought some people I know might be interested.  I tried to keep it brief; perhaps you'll find it mildly interesting and/or amusing.

So here goes:  During the week or so before Independence Day week, I'm tooling around central and southern Colorado for my job as a Loss Control Rep for Overland Solutions Inc.  What I do is inspect commercial properties and businesses and then file reports to insurance providers about whether these businesses are OK insurance risks, and also make recommendations to both parties if required.  You don't need to know any more about the job other than it requires a LOT of travel on my part.

You might ask:  When and how did you stop selling home entertainment products, like you did for over 25 years, and switch to this?  Details of that are not really important, other than to comment that keeping my nice house with a pool in Albuquerque suddenly loomed as more attractive than residing in a large Frigidaire carton.

Back to Colorado: it's a weird trip already.  Half the state is burning down and I'm blocked from reaching several planned destinations in places like Colorado Springs, South Fork, etc.  I complete a big loop around the state and start to head back into New Mexico when suddenly I find I'm actually in Wackyland.  The place where double vision takes over and I have to either decide between which of the two roads I'm seeing I want to drive on, or pulling over and waiting 15 min for it to pass.

Anyway, I manage to make it home alive, and the following week is an "office week" in which I write up my reports and plan my travel for the following week.  But things get weirder quickly.  Dizziness and a lack of balance has me knocking stuff over and breaking it.  Headaches that wave from mild pain to ones that almost make me pass out when I stand up.  But the thing that launches me out of the house and into the urgent care clinic is this:

I write a sentence that says something like this: "Business opened as LLC in December 2010."  What I see on the page is "Busxxsde pigbyu as KKJ ix 3255."  WTF??  I delete it and re-type the same gibberish.  Nice knowin' ya, brain.

So it's off to a local urgent care clinic called ABQ Health Partners with Pam.  (This is also where my cousin Nick's wife Andrea works as a Physician's Assistant.)  After a basic exam, then a CAT scan, then an MRI, a really great urgent care clinic doctor named Raul Griegos, who managed to make all this happen in one day, is giving me news I wasn't ready for: you got a big-ass mass in the back of your skull, brother.  Next stop: University of New Mexico Neurosurgery Clinic.

Flash-forward past more tests and MRI's and all the paperwork, schedule changes, and other various bureaucratic hell it takes to get set up for surgery at UNM Hospital, not to mention dealing with taking disability time off from my job, dealing with multiple insurance companies and other nightmares from hell I can't think about if I actually want to get better.

It's now July 2 and I'm finally meeting the neurosurgeon who will be doing the cutting: Dr. Martina Stippler, a slim blonde in her late 30's with a heavy Austrian accent.  Fantastic!  This is exactly what a brain surgeon is supposed to look and sound like!  Except I can't understand half of what she's saying . . . like when she's telling me about being careful working around something called "wains."  I look to Pam for help and she translates in a low voice: "veins."


July 15 6:00 am: skull-lopping day.  After the customary wait, I get wheeled in and proceed to be visited by Dr. Stippler the surgeon, various other doctors, anesthesiologists, nurses, and seemingly dozens of people who will be involved.  Pam and Caroline are there, and my cousin Nick and his wife Andrea are already in the waiting room.  I'm offered anti-anxiety drugs in case I'm freaking out over this but I'm surprisingly calm about the whole deal.  Finally it's showtime, and kissing Pam y Caroline adios is the last thing I remember about this day.

Next thing I'm told, I'm back in recovery after successful brain surgery.  I'm in good spirits, talking to the doctor and to Pam and Caroline and Nick and Andrea and other people.  At least that's what they tell me; I don't remember a single moment of any of this.  They have good drugs in that hospital.

So I guess I pretty much sleep nonstop for about a day, then I'm awake with Pam on Tuesday.  Feeling pretty good!  All my headaches are gone and even the surgery incision doesn't hurt much, but I think at this point they just have loaded up on Oxy pretty good.  In fact, the only thing causing me any real discomfort is the catheter they stuck in me, which I start pleading with the nurse to remove.  So they get that goddamn medieval torture instrument off little Steve, and after a few squirts during the day that feel like pissing fire I'm OK down there again.

Andrea and her daughter Miranda visit during the day, then Nick stops by in the evening and we watch the MLB All-Star Game, which turns out to be boring as hell, a 3-zip yawner won by the AL.  After Nick leaves I crash, but wake up at 2 am and can't get back to sleep.  The nurse takes me on a few strolls thru the recovery room during the rest of the evening but I don't have anything to read.  She finds some cancer literature I can read, later I get breakfast, then I just sit around waiting to get sprung from the hospital.

So . . . I show up at the hospital at 6 am Monday and by mid-afternoon on Wednesday I'm heading home after major brain surgery.  Amazing, huh?  After a day or two I stop using the Oxy and switch to just Tylenol for any pain or discomfort, of which there is actually little.

So that's my story, and I'm sticking to it.  There's a lot more to the story of course, but I'm going to close out my first-ever "blog" for now.  We'll see if anyone has the slightest interest before I start the next installment.  Or who knows, maybe I'll just write it to amuse myself.

One last note before I finish.  Obviously a bizarre experience that I'd never wish on anyone . . . well, maybe on a few former "leaders" of this country I can think of.  After careful consideration I decided to be pretty public about it, as you saw in various emails, photos, and Facebook posts from me.  That was the best decision I could have made.  I cannot begin to tell you how rewarding, gratifying, and comforting I found the outpouring of support from family, dear old friends, newer friends, casual acquaintances, and even people I barely know.  Who woulda thunk a surly old bastard like me would receive all this love and support?  You are all simply the best . . . better than all the rest!

But of course the best among you is my saintly and long-suffering wife Pam.  Love you to the end, Baby!

So, until my next "blog" (if any), I'll leave you with my standard farewell from my favorite TV action heroes, The Cisco Kid and his trusty sidekick Pancho:

"GOODBYE AMIGOS!"  "SEE YOU SOON!"  "HAH!"

Post-Surgery Head Shot!