Part Thirteen - PIRATES

I have already communicated the good news I received on Friday to many of you. Four weeks ago, I had received more daunting news when scans displayed “enhancements” which my doctors could not be sure meant cancer growth or not. Another MRI was ordered for four weeks hence, at which point a determination would be made about whether the scans were showing real cancer progression or “pseudo-progression.” The fateful day came last Friday when I met with my doctor to receive the verdict. Frankly, given the way things have been going, I was expecting the worst. But my doctor doesn’t possess the best poker face, so his chipper mood tipped me off that good news was in the offing. Sure enough, as he showed me the scans (which always look like incomprehensible blobs to me) he explained that they showed no progression since the last scans.

HUZZAH! Great news and a tremendous relief. I will continue to use the chemo drug Temodar for the foreseeable future . . . which leads into my next bit of not-so-happy news. 

I have never seen a bill for this Temodar. The UNM Cancer Center led me to believe it was their mastery of charitable foundations that spared me this expense. The truth is that last year, I had already blown through all my deductibles and out-of-pocket limits by the time Big Pharma sunk their bloody fangs into my throat. Even expecting the worst, nothing could prepare me for the shock that awaited me when I saw the actual bill. My bill for a five-day supply of my allegedly life-saving drug came close to $2300, or a bit over $150 a pill.

The only “good” news in this shameful scenario is that this blows through my deductible for 2014, so Blue Cross foots the bill from here on. But this doesn’t come anywhere close to excusing this bald, unabashed piracy. There is no possible justification for it anywhere on Earth, and certainly not in a place that loves to lay claim to “the best health care system on the planet.” The U.S. health care system is rotten to the core, a crime syndicate of Big Pharma, hospitals, and insurance companies, far more damaging to the health and welfare of this country than any international drug cartel. One need only observe the muscle and zillions expended to quash any attempts to break this racket or make health care even slightly more affordable or available to a few more people. The U.S. health care system is something about which all Americans should feel ashamed.

Groundhog Day

I know, I know, it’s Super Bowl Sunday. There was a time I’d get all excited over this, and some people will recall SB parties at our house in Grayslake, IL. I care a lot less about this stuff than I used to, and some of you may have read a previous entry in this blog (“Pigskin Pigheads”) in which I expressed my increasing disenchantment with most big-time sports, and NFL football in particular. But I do still enjoy spectacle, and I know several Broncos fans, so what the hell, bring on the cheese dip!

However, there is another big event occurring today, on the same day as the Super Bowl for the first time in history: Groundhog Day!  Unfortunately, I believe that Punxsutawney Phil’s prognostications are limited to the weather. He has not been known to handicap sporting events, to my knowledge.

The film GROUNDHOG DAY, written by Danny Rubin and Harold Ramis and directed by Ramis, was released to generally favorable reviews and decent box office business in 1993.  The reputation of the film has grown steadily over the past twenty years, to the point where it is now considered one of the classic American films of all time. More than this, the film has come to be embraced by scholars, theologians, philosophers, religious leaders, and a host of other deep thinkers as a thoughtful and moving treatise on the meaning of life, death, love, mortality, among other things.

Hold on just a darn minute, you say! This is a Bill Murray yuk-fest, and don’t you dare ruin it for me with your egghead philosophizing! I couldn’t agree more, and the last thing I would ever think of is to diminish the comic element of GROUNDHOG DAY. Laughter is one of our most spontaneous and heartfelt emotions, which no amount of analysis will ever explain, thank Zod. Comedy is the most difficult art form to pull off, IMNSHO, and this is why it can be such a powerful medium for imparting deeper truths.

But deeper truths are never going to be imparted to anyone by a yokel like me, and many people smarter than me have written extensively about GROUNDHOG DAY. I love the film and watch it every Groundhog Day. It never disappoints and I always see new things in it. I believe this little film resonates with so many people because it offers the promise of hope and personal redemption that everyone wants.  The world is far from a perfect place and we are far from perfect creations, but each day offers each of us a fresh start to try to make each of our little words a little more perfect. What else can we do?

I was never a huge fan of the late Chicago film critic Roger Ebert, but I enjoyed his writing in general, and found that he could occasionally rise above the mundane and produce work like the following.  I feel this piece by Ebert speaks about GROUNDHOG DAY was well as any I have read:

http://www.rogerebert.com/reviews/great-movie-groundhog-day-1993

GOODBYE AMIGOS!  SEE YOU SOON!  HAHA!!

Part Twelve – Mini-Blog

Hello, fans.  Sorry to follow up with a new blog so close on the heels of the last one, but I received the results of my latest MRI scans last week, so I thought I would share them with you.  This, after all, is supposed to be the point of the blog, right?  So this one is just a quickie to give you the latest news of my little dark passenger.

The news is less than stellar, but there is a chance that it may be less dire than it might immediately appear.  The new scans provide evidence that there may be new growth in the tumor.  My oncologist is not certain, and feels the images might be showing what he calls “pseudo-progression.”  The attached images are before and after shots from my most recent scans on 11/4/13 and 1/7/14.  The first set of scans is of the top of my head and the second set is of the back of my head.  You can pretty easily see the growth to the right in both “after” images.  Quoting the radiology report:

“New finger-like area of enhancement dorsal to the dominant residual tumor as well as increasing T2 abnormality in the left parietal lobe superiorly.  Overall findings worrisome for progression of disease.”

Here’s the plan of attack: I resumed the increased dosage of the drug Temodar this week as originally scheduled, for five days.  I will have new scans in four weeks instead of the planned eight weeks.  These scans should confirm whether this is tumor growth or “pseudo-progression.”  If the former, I will switch to an infusion treatment immediately – meaning that same day.  I will continue these treatments every two weeks for I don’t know how long.  The drug I will get is called Avastin.  Here’s how the drug manufacturer’s web site describes it:

Avastin is a tumor-starving (or anti-angiogenic) therapy. The purpose of Avastin is to block a protein called vascular endothelial growth factor, or VEGF. Normal cells produce VEGF, but some cancer cells overproduce VEGF. Blocking VEGF may prevent the growth of new blood vessels that feed tumors.

AVASTIN (click for more info)

My new scans will be on Wed 2/7 and I meet with the doctor to discuss the results on Fri 2/9.  So I have no other choice but to chill until then and hope for the most favorable news.  In the meantime, I'm continuing my efforts to battle the little bastard with diet, exercise, a positive attitude, and the continued support of all my homies and homettes.

Hey, I have always been a pseudo-intellectual, so it's not at all unreasonable that I should have pseudo-cancer.

GOODBYE AMIGOS!  SEE YOU SOON!  HAHA!!

Top of head 11/4/13

Top of head 1/7/14

Back of head 11/4/13

Back of head 1/7/14

His Majesty Maddux

(Editor’s Note:  While in the process of composing this latest missive, I received the results of my latest MRI scans.  I thought to abandon this topic in favor of discussing these, which is, after all, the main function of this blog.  However, I decided to finish this and address my latest cancer news in another edition of the blog.)

Major League Baseball made official a foregone conclusion this week when it elected former Cubs pitcher Greg Maddux to its Hall of Fame in a near-unanimous vote.  (Kept from being unanimous by a few all-about-me nerds who will fade into oblivion soon enough.)  It’s a bittersweet day for Cubs fans, who found the most brilliant symbol of their perennial loser status right in their faces once again.  Greg Maddux is the personification of the stupidity, arrogance, and amateurishness that has fueled the longest championship drought in the history of professional sports.

I don’t have to (and if I had any charity in my heart for Cubs fans, wouldn’t) repeat how everyone in the world – with the exception of Cubs senior management – knew exactly what the Cubs had in Maddux.  Or how the Cubs had Maddux signed in the spring of 1992 but opted to show the world their poker skills by pulling the offer off the table until after the ’92 season.  Or how that gamble by the Cubs power brokers paid off when Maddux won his first Cy Young Award at the end of that season.  Or how Maddux gave the Cubs one more chance to recover from this colossal screw-up by setting a deadline for their final offer, and how clueless old white man arrogance prevailed still once more when the Cubs decided to tender their offer to Maddux one hour beyond his deadline, and were somehow shocked when Maddux stuck to his guns and was already walking out the door when the offer came.  No, I’ll spare you the pain of remembering all of that.

Maddux’s amazing career includes four straight Cy Young Awards, 17 straight years winning 15 or more games, and 18 Gold Gloves.  He was also typically the among the top hitting pitchers in the league, sporting batting averages in the mid-.200’s while most hurlers never even saw triple digits.  So on top of being the best pitcher in the league, he was also the best hitting pitcher and fielded his position better than anyone else.  In other words, he was a BALLPLAYER.  But Maddux had an additional quality that set him apart from the rest.  He was cool.

Cool is a quality has all but vanished from the chest-thumping, in-your-face, arrested adolescent world of celebrity of today.  Miles Davis composed The Birth of the Cool, but nobody in today’s world would dig it.  Robert Mitchum or Steve McQueen would have no place in today’s world.  But Maddux had it – the cool of the assassin.

An incident I witnessed at Wrigley Field early in Maddux’s career made an indelible impression.  Maddux walked a veteran player with a high inside pitch.  This player squawked loudly at Maddux all the way down the first base line; I think perhaps he even strayed toward the mound but was intercepted by the first base coach.  Maddux stood with his back to home plate ignoring this entire demonstration.  The next batter dug into the batter’s box as Maddux settled into the set position to face him.  Suddenly, Maddux whirled and hurled a pickoff throw to first base – except that his throw went straight as a rifle shot to the head of the base runner, who escaped a certain skull fracture by diving into the dirt.  Whatever combativeness this player formerly displayed was gone as he picked himself off the ground, dusted himself off, and stared out in amazement at this brash young kid, who by now had his back to him again as he readied for his next pitch.  I guess the guy had never before had to escape a brush-back pitch while standing on first base.  I just watched this and thought, damn, this kid is bad-ass.

Cool remains a quality that is difficult to define.  Attempting to define it is decidedly un-cool.  It is no longer even an attractive quality in our narcissistic world of excessive introspection and self-obsession (he says, as he writes a blog that is mostly about himself).  Face it, you either got it or you don’t, and few have it.  Maddux always had it and always will.  I’ll bet he made the Hall of Fame leave a message while he finished his golf game.

Until next time, enjoy this scan of my autographed Greg Maddux rookie card, obtained and signed in person after an evening of boozing (and smoking) with Tom Glavine, David Justice, and several other Braves in a hotel bar many years ago.  OK, Maddux didn’t actually join the party, but he was kind enough to sign and return this card after I left it with the desk clerk for him.  Admittedly un-cool, but I’m glad to have the card.

GOODBYE AMIGOS!  SEE YOU SOON!  HAHA!!

Happy New Year!

Just a quick note to wish everyone I know a happy 2014!

The passing of the great British actor Peter O’Toole brought to mind one of his most popular films, My Favorite Year, released in 1982.  I wish that film title could describe my 2013, but my reasons for assigning this particular year a lower ranking than that are pretty obvious, at least to me.  Good riddance to it!

It’s great having Caroline home from her sophomore year at Wesleyan University for Christmas, and she’ll be here for another few weeks.  Had a great Christmas dinner with cousin Nick, his lovely wife Andrea and their beautiful daughter Miranda, who is very busy weighing her choices for college next year.  Tried to coordinate holiday get-togethers with Russ and Melody, but dog injuries and new jobs (good and bad) got in the way of that.

Enough already; this is starting to sound like those letters you get with Christmas cards.  The ones I set aside to read but then Pam has to warn me a week after New Year’s that she’s tossing them so I can say wait, I haven’t read those yet!  Just kidding; I love getting those letters, and they make great Presidents Day reading.  Kind of like certain “blogs.”

The holidays were not without their share of weirdness.  I was anticipating a visit from an old friend and his newest soul mate, with whom he had purchased a two-flat on Chicago’s northwest side within the past year. (Names have been withheld to protect the innocent.)   I was looking forward to the visit when I learned that plans had changed and that my friend would now be accompanied by another old friend instead of the soul mate.  These new plans then took a bizarre and tragic turn when I learned that the first friend would now be unable to make the trip due to the death of his older brother in an auto accident up in the deepest wilds of Alaska.  This is another story altogether that I may re-visit in a future edition of MBFGC.

Fortunately, my other friend Dave (not innocent so in no need of protection) was still able to make the trip.  Dave is an old, old friend I have not seen in many years.  He is recovering from a bad marriage that nonetheless produced two very nice kids, a daughter in her twenties and a son, 16.  He is also dealing with health issues and has taken some dramatic steps in recent years to address both physical and emotional issues in his life.

Dave was diagnosed with MS several years ago and embarked on a mission to take over his own health care.  He quit his job and enrolled at one of the better known schools for integrative medicine, with branches in San Diego, Chicago, and New York.  Now he’s a licensed acupuncturist and herbalist and I think does some massage stuff as well.  All pretty surprising, considering Dave is an old softball buddy with whom I shared many a late night of heavy boozing and other “alternative treatments” back in the day.  But what he’s doing now works great for him; he seems in the peak of health and is managing the MS quite well, thank you kindly.  It was good to have Dave around last week to reinforce the good behavior that I’m known to slack off from more frequently than is good for me.  The free acupuncture for the entire family was great, too!  But just in case you think that Dr. Andrew Weil moved in with us for the weekend, be advised that Dave also celebrated his visit by consuming half the supply of red wine in New Mexico, tho Pam and I helped a little.

Well, that’s all for now, as I’m heading out for some MRI fun this afternoon.  These will be my first scans in about eight weeks, so I’ll soon know how my little dark passenger has been celebrating the holidays.  I’ll update you in the next edition of MBFGC.  I hope all of you are imbued with the hope and positive energy that the New Year brings.  At least those of you who haven’t already felt the hard slap of reality in Chicago and other frozen outposts east of the Land of Enchantment.

GOODBYE AMIGOS!  SEE YOU SOON!  HAHA!!

Merry Christmas Edition

"NOW ONE YEAR IT COMES ON CHRISTMAS, and in fact it is the night before Christmas . . . . "

So begins one of my favorite stories by one of my favorite writers: Dancing Dan's Christmas by Damon Runyon. Many of you know this story because I have sent it to you in the past. Runyon is of course the legendary short story writer whose stories of broads, booze, and bums inspired popular shows and films such as Guys and Dolls, The Lemon Drop Kid, Pocketful of Miracles and other faves. Runyon's stories are hilarious and of course always in the PRESENT TENSE - a style from which he never strays.

Unless you're an unconscionable Grinch, ya gotta love Christmas, right? What's not to like? Stuffing yourself, hanging with people you (hopefully) love or at least like, and getting amnesia about what a miserable place the world is for at least a day. I know there are the "war on Christmas" loons who get their yuletide jollies by chastising us for "forgetting the "meaning of Christmas" but thankfully these are in the minority. The roots of the traditions we celebrate around Christmas began in various places around the world well before the birth of Christ, which is only one of the events that contributes to the holiday. Christ sure wasn't born freezing his little holy keester off in some stable on December 25th, but when Christians wanted to start celebrating his birthday, what better time to do it than when all the pagans were partying down for Saturnalia during the winter solstice? This way, Christians could observe their holiday undercover, without worrying about being fed to lions in the Coliseum.

So, while I am happy for all Christians who celebrate the birth of their lord at this time of year, please don't begrudge us non-believers our share of the holiday.  Hell, almost every Jew I ever grew up with had a Christmas tree in his house at this time of the year. The celebration of making it through yet another year and the anticipation of a fresh start in the new year belongs to everyone. And by the way, it's OK to say "Merry Christmas" to anyone you feel like saying it to. I do it all the time.

So I will close by offering up the same holiday tale to you again this year. Settle in with some hot or cold liquid holiday cheer, click on the link below and enjoy the story. Better yet, download the pdf and print it out. Don't worry, the file is "safe."  I greatly appreciate the opportunity to share the holidays with you in any way that we can.

MERRY CHRISTMAS AMIGOS!  SEE YOU SOON!  HAHA!

Dancing Dan's Christmas (click for story)

Part Eight

Sorry it's been so long between updates, fans.  Went back on the road and have traveled to Nebraska, South Dakota, and Nebraska again in the past six weeks.  Doing all this behind the back of my chief oncologist, who was pretty emphatic about not wanting me to drive, and certainly not this much.  Following these trips, I've come around to his way of thinking.  More on that below.

On the cancer front, I returned for new MRI's two weeks ago.  This was after a four-week break from any treatments.  The reading of the scans by my doctor was a little vague, but I guess as good as I could have hoped for.  What the photos below show is how my brain looked right after the surgery on 7/15 and how it looked on 11/4.  The first photo shows (with the help of lines drawn on the scans by my doctor) my brain with one side pushed off to the left like an old, beat up Clincher 16" softball we've knocked around the empty lot too long. The new photos show a brain with two nice, even hemispheres, like a new out-of-the box Clincher.

7/15/2013 (post-surgery)

11/4/2013

That's the good news.  The doc was a little less clear about explaining the lighter blobs you see near the bottom of the scans.  This could be scar tissue or cavities left over from the surgery, or some of it could be cancer.  They don't know at this point, which struck me as a little weird, considering I was in that machine for over 40 minutes.

If you've ever had an MRI on your head (I hope not), you know what a weird process it is. I can't explain it, of course, but your head gets stuck into this strong magnetic field which makes your hydrogen atoms go nuts and start emitting radio frequencies.  The magnetic coils are switched on and off rapidly, which causes all kinds of wacky noises inside that machine, something like Jimi Hendrix or Pete Townsend abusing the hell out of their Marshall amp towers.  All this racket somehow gets turned into images, helped along by contrast dye the techs shoot you up with.  See . . . I told you I couldn't explain it.

MRI machine

Following the MRI's, I took one more road trip before starting a new chemo routine.  Only five days every four weeks, but at double the dosage.  The first night I mixed up my nausea meds and found myself talkin' to the toilet (round-trip meal ticket!) four times in one night.  The next night I used the nausea med that works (Zofran!) and kept everything down.

Also, after I returned from this trip, I knew I couldn't do this job anymore.  It involves driving at least 10 hours every day (with stops for inspections) and usually covering 1200-1500 miles in a week, frequently in truly horrific weather.  Considering my doctor doesn't want me driving at all, he would freak if he knew I was doing this.  So after the last trip I told my employers I had to get off the road and asked to be re-assigned to some other duties.  They had to accommodate me, so they came up with a new job that will pay about 30% less than my current job, even though other opportunities exist that pay the same or more.  It is pointless for me to elaborate on the personalities and corporate culture that produced this kind of shabby treatment, so I won't bore you further with it.

My new situation will create some financial stress as we head into the holidays, but I'm looking forward to the holidays nonetheless.  Time to assign toxic situations and toxic people to the waste containment facilities where they belong, safely removed from my consciousness.  Time to enjoy the company of those I love, or at least those who can stand my presence.

HAPPY THANKSGIVING, AMIGOS!  SEE YOU SOON!  HAH!

Part Seven

Good morning hepcats and kittens!  A little tardy on the latest update, but my baby sister Melody and her partner Bonnie visited over the weekend, and we were having too much fun doing New Mexico and Balloon Fiesta stuff to bother with any nasty cancer news.

The news on the cancer front is all good, so far.  Finished up my chemo and radiation treatments last Thursday and am on the mend from those.  What little hair I have is growing back already, no more nausea meds and no more nausea, and feel the old pep returning to my step.  Today is my first official day back at work, tho I won't resume traveling until next week.

The last week of radiation was a "boost" week, in which the radiation was focused entirely on what's left of the tumor (nothing, hopefully) and the surrounding area was left alone.  My scalp is still a little crispy from that but at last it's over!  A month's vacation from any treatments other than the myriad of supplements that Dr. Prasad of the Center for Life has prescribed for me.  Then I go back for new MRI's and the verdict on how successful these treatments were.

At least I got a graduation present from the UNM Cancer Center – my souvenir radiation mask (see photo).  This is the thing that clamped my head down for radiation treatments for six weeks.  Just in time for Halloween!

RADIATION MASK

That's all the news that's fit to print, gang!  More visitors this weekend as Judy and Kelly descend on Casa Bliss for more Balloon Fiesta fun.  Hope to stay in touch with all of you but I'm starting to feel like I'm old news (sniffle).  OK by me – I hope this stuff becomes ancient news really quick.

GOODBYE AMIGOS!  SEE YOU SOON – HAHA!

MELODY Y BONNIE AT JINJA BAR ABQ

BALLOONS!

Part Six

Eventful week in CancerWorld.  Continued into week 3 of chemo/radiation with no major side effects other than fatigue and some scalp irritation.  Controlling the Temodar nausea with the Prochlorperazine and the Zofran, tho one oncologist thinks I might want to try backing off the Zofran to see what happens.  Some of the landscaping in my neighborhood might not be too crazy about that move.

The most new news is that I had my first sessions at the Center for Life, which is run by UNM’s Dept. of Integrative Medicine.  This is where you get your non-traditional treatments like acupuncture, massage therapy, meditation, and all kinds of herbal remedies like green tea and other stuff.  The CFL is run by Dr. Arti Prasad, who is highly respected in this field.  (They get her to do TED talks etc.) 

Dr. Arti Prasad, UNM Center for Life (click!)

My meeting with Dr. Prasad was great.  It lasted over an hour, I learned a lot, and I left with a bunch of new supplements and an appointment for my first acupuncture session ever.  The supps included a probiotic (“good bacteria” for digestion), a CoQ10 supp (keep plasma levels up and ticker going), and one that’s 500 mg of turmeric plus some other stuff and is an anti-inflammatory plus a “safe for use with radiation” antioxidant.  They also pointed me toward someone who sells a product made with wheat germ extract that’s supposed to be a great anti-oxidant, and also safe to use during cancer treatments, but the salesperson was too oily so I didn't buy any of it.

On Tuesday evening after Labor Day I had my first acupuncture session ever, with Dr. Ingrid Reyna at the UNM Center for Life.  She stuck me everywhere – head, face, hands, legs (wear shorts next time), and belly.  Felt one or two pricks while getting stuck but mostly I didn’t feel anything.  It all must have worked because I dozed off about five minutes after she left the room.  That American Indian flute music is damn relaxing!  I drifted in and out of slumberland for the next 30 minutes or so.  Unfortunately I was awoken too often by my own snoring.  I thought I had broken the acupuncture rules by falling asleep, but the doc told me it was OK.

The real highlight of the week was when our dear old friends Sue and Mike McNeil made the trip from Columbus, OH to be our house guests over Labor Day weekend.  I forgot how much sauce we go thru when those two are in town!  Fortunately, I’m observing under-21 drinking rules (well, mostly), so we managed to make it thru the weekend without pouring the cooking sherry.  Actually, Sue made a mega-batch of her secret recipe sangria (spoiler: peach brandy and something called “Liquor 43” are two key ingredients) and a gay time in the pool was had by all.  (Can I still say that?)

Love all the visitors – next up are Judy and Kelly for Balloon Fiesta!  It is in this spirit that Pam, Caroline, The Cisco Kid, Pancho, and I leave you till the next time:

GOODBYE AMIGOS!  SEE YOU SOON!  HAHA!

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!