Post 27 - Final Chapter

Hello Everybody,

This is Pam. I wanted to add some closure to My Big Fat Greek Cancer and try to fill in some details since Steve’s last posting at the end of July. Thank you everybody for all your support, love, and kind words. I hope this somehow helps you deal with the loss that we are all feeling. I know it helped me just to write it.

After being summarily dismissed by his oncologist at the end of June, Steve spent July holding his own against the cancer. He walked at least a mile every morning, listened to books (he could no longer read),  and was able to enjoy his pool.

But at the beginning of August, the slide downhill began. First clue: After he returned from a walk one day, I noticed a large scrape and blood on the side of his right calf. Alarmed, I asked him if he had fallen, and he responded, “What are you talking about?” He had no memory of falling and didn’t even feel the wound.

He fairly quickly lost control and feeling of his right side. After a number of falls and calls to friends or the fire department to help lift him off the floor, Steve went into home hospice about the middle of August. He was somewhat aware during  a heartwarming Labor Day weekend with Russ and Melody and friends Sue and Mike, but then rapidly declined. He stopped eating or drinking last Thursday and took his last breath about 6:15 Saturday morning.

Steve suffered greatly this past year. I’m looking at the hideous mask that he wore during six weeks of radiation. I’ve just disposed of the anti-nausea medication he needed during months of chemotherapy and the pain pills he took during his attack of shingles. Most of all, he suffered from his loss of language and the inability to find the words to express himself. Let’s face it—Steve loved nothing better than to talk and express his opinions. Yet I don’t believe he ever revealed any of this suffering in his blog. He would just sometimes say to me, “Things are getting harder for me, Pam.”

Rest in peace, hon.

For anyone who is interested in a contribution to the memory of Steve please consider donating here: National Brain Tumor Society.

Love, 

Pam

Part 26--News, Notes, and Passing Time

No big news in the world of brain damage. As of this morning we are submitting medical records to participate in a clinical trial testing a new drug in Scottsdale, Arizona. I will keep you posted on the results.

I wish I could tell you more, but I know things now that my brain won’t let me explain. I've ceased trying to find the words as it's too hard. Fortunately I still can read now by listening to audio books. I can learn what I know for myself only. It's still too weird for me to explain. In the meantime I can at least still learn and enjoy for myself even if I can't explain to you. Make any sense? No, I didn't think so either. But you're smarter than I.

So I basically still have time for a lot of reading, and that's a good thing, isn't it? Here are book blurbs from some recent stuff I've just read, including an old classic I finally finished. May not even be worth it anymore but that's what you do when you have this kind of time on your hands. Not the worst thing in the world, right?

Hope you enjoy it and please keep in touch.

Love, Steve and Pam

This Is Where I Leave You

• 
  
• Written by: Jonathan Tropper
• 
  

The death of Judd Foxman's father marks the first time that the entire Foxman family - including Judd's mother, brothers, and sister - have been together in years. Conspicuously absent: Judd's wife, Jen, whose 14-month affair with Judd's radio-shock-jock boss has recently become painfully public.

Simultaneously mourning the death of his father and the demise of his marriage, Judd joins the rest of the Foxmans as they reluctantly submit to their patriarch's dying request: to spend the seven days following the funeral together. In the same house. Like a family.

As the week quickly spins out of control, longstanding grudges resurface, secrets are revealed, and old passions reawakened. For Judd, it's a weeklong attempt to make sense of the mess his life has become while trying in vain not to get sucked into the regressive battles of his madly dysfunctional family.

Dune

• Written by: Frank Herbert
• 
  

Here is the novel that will be forever considered a triumph of the imagination. Set on the desert planet Arrakis, Dune is the story of the boy Paul Atreides, who would become the mysterious man known as Maud'dib. He would avenge the traitorous plot against his noble family and would bring to fruition humankind's most ancient and unattainable dream.

A stunning blend of adventure and mysticism, environmentalism and politics, Dune won the first Nebula Award, shared the Hugo Award, and formed the basis of what is undoubtedly the grandest epic in science fiction.

Frank Herbert's death in 1986 was a tragic loss, yet the astounding legacy of his visionary fiction will live forever.

The Circle

• Written by: Dave Eggers
• 
  
• The Circle is the exhilarating new audiobook from Dave Eggers, bestselling author of A Hologram for the King, a finalist for the National Book Award.

When Mae Holland is hired to work for the Circle, the world's most powerful internet company, she feels she's been given the opportunity of a lifetime. The Circle, run out of a sprawling California campus, links users' personal emails, social media, banking, and purchasing with their universal operating system, resulting in one online identity and a new age of civility and transparency.

As Mae tours the open-plan office spaces, the towering glass dining facilities, the cozy dorms for those who spend nights at work, she is thrilled with the company's modernity and activity. There are parties that last through the night, there are famous musicians playing on the lawn, there are athletic activities and clubs and brunches, and even an aquarium of rare fish retrieved from the Marianas TrenThech by the CEO.

Mae can't believe her luck, her great fortune to work for the most influential company in the world - even as life beyond the campus grows distant, even as a strange encounter with a colleague leaves her shaken, even as her role at the Circle becomes increasingly public. What begins as the captivating story of one woman's ambition and idealism soon becomes a heart-racing novel of suspense, raising questions about memory, history, privacy, democracy, and the limits of human knowledge.

A Long Way Down

• Written by: Nick Hornby
• 
  

In his eagerly awaited fourth novel, New York Times best-selling author Nick Hornby mines the hearts and psyches of four lost souls who connect just when they've reached the end of the line.

Meet Martin, JJ, Jess, and Maureen. Four people who come together on New Year's Eve: a former TV talk show host, a musician, a teenage girl, and a mother. Three are British, one is American. They encounter one another on the roof of Topper's House, a London destination famous as the last stop for those ready to end their lives.

In four distinct and riveting first-person voices, Nick Hornby tells a story of four individuals confronting the limits of choice, circumstance, and their own mortality. This is a tale of connections made and missed, punishing regrets, and the grace of second chances.

Intense, hilarious, provocative, and moving, A Long Way Down is a novel about suicide that is, surprisingly, full of life.

Part 25--Where We Are Today

Once again, we had a wonderful visit with everyone in Chicago.

I wish I could have better news to share with you. Unfortunately, the news is not what we have been hoping for. When I got back from Chicago, an MRI revealed that the cancer had spread, and my oncologist told me he could do nothing more for me. The cancer center set up an appointment with a palliative care/hospice organization for terminally ill people.

This past Thursday I did meet with the head of the UNM department of neurosurgery, whose name is Dr. Howard Yonas. He showed us how the tumor is now growing deeper into my brain, and rather than a large mass pressing on my brain, it is now replacing cells and shooting “fingers” into different areas. Surgery is therefore not possible. We will revisit Dr. Yonas in another eight weeks to see if things have changed.

There's a couple of clinical trials Pam and I are looking into. Will let you know if any of it is worth trying.

Meanwhile, your kind wishes and friendship are helping to keep us going. Enjoy today.

Part 24--Muchas Gracias to All!

I just completed such a fantastic visit with so many people that I will never be able to convey what it meant to me. All I can do is express my sincere thanks for everyone's kind wishes. What an amazing treat to see and talk to all of you!

Of course this never would have happened without the efforts of some hardworking people. Number one in the list has to be my amazing wife Pam. A close second is my sincere and true best friend John Leo. Thanks, too, to Dave and Cindy and to number one brother Russ for making it happen.

And thanks to all the following for their kind wishes.

Thursday evening, June 19

Pizza Art Cafe

Jim and Laura, June, Dave

Friday  evening, June 20

Peggy’s

Peggy and John, Judy and Kelly, Ken and Lori and Adam, Joan, Trish and Mike, Matt, Tim and Sharon

Saturday afternoon, June 21

Quenchers

Deb, Maureen and Donald, Joann, Bill and Betty and Madeline, Mike, Ricky, Charlyne, Kent, Josie and Edna, Earl, Ted (all the way from New Jersey), Baker, Doug and Leona, Dave, et al.

Saturday evening, June 21

Psistaria Greek Taverna

The Spudeas clan: Pam and Spero, Chrissee, John and Donna and Philip, Kim

Sunday afternoon, June 22

Trish Bliss’s

The Bliss clan: Trish and Zoe and Samantha, Nike, Deno, Charlie and Clarissa and little Charlie, Butch, Theresa, Rick and Donna and Kathleen, Vinnie and Sabrina and Gavin, Stephanie

Monday afternoon, June 23

Downtown

Met cousin Mit for lunch at Miller’s Pub with Russ and John

Walked in Millennium Park

Monday night, June 23

Cubs game on a rooftop—courtesy of Charlie Bliss (thanks, Charlie!)

John, Ken, and Dave

Part 23--My Kind of Town

In a couple of days, Pam and I will be traveling to Chicago for a visit. I'm thankful to everyone who has made themselves available, and I'm looking forward to seeing all of you.

I wish I could convey to you the difficulty of what was previously as simple as breathing. Imagine dealing in complex concepts like humor, irony, tension, and the gamut of emotions that humans can experience. Now try it when you are unable to complete a full sentence.

What are you talking about, you say? That sounds like a complete sentence to me. And yes, thank goodness, I am able to complete a sentence in this manner, dictating to Dragon. But it's not how we talk, is it?

Fortunately, I am able to converse in normal dialogue. Well close, but give me a nudge from time to time, and I will be off and rolling again. I wish I could explain how this works, but unfortunately I find myself at a loss. Try talking about people and things when you can’t remember their names, if you're looking for a quick laugh. Fortunately, Pam is close enough to me that she can often fill in the names through a mix of hints and guesswork.

In any event, don't let me scare you. It's pretty astonishing how you can forget someone or something you've known for over 60 years, and then they can come back to you in a snap. I'm looking forward to a lot of conversations with a lot of people I love in the next week. Can't wait to see you all!

Love,

Steve

Part 22--New Treatment and Travel Plans

It's been a while since I checked in with the news about my alleged brain. You may recall that our most previous episode ended with new and decidedly gloomy news about my most recent check up. While this month's update will not offer unbridled optimism to anyone, there is at least reason to keep the mood in the upswing for the immediate future.

 

Trying to keep these various treatments and dates straight. As far as I can recall, I had my last MRI on May 12. On May 16 we met with Dr. Lee for the results and found out that the tumor had unquestionably progressed, and I began new treatments with something called Irinotecan.

 

To be honest, I haven't spent a lot of time studying up on this stuff. I guess it is used primarily to treat people with  rectal cancer and colon cancer, but other types as well. My first treatment was an infusion that lasted about three hours. I felt no ill effect until about two days afterward, but then the chemo clobbered me hard. I did nothing but sleep for about five days,  except for the few hours each day when I was awake but couldn't remember much, like what my cellphone was used for or who my best friend was. Then I began to emerge from the drowsiness I felt. I gradually recovered my strength and felt pretty good for the next two weeks.

 

This leads into my most recent checkup, which occurred on Friday, June 6. I guess the best way to describe  the news is good, with guarded optimism. We learned that the sudden decline may have been due as much to the chemo as it may have been to the tumor. Lee called it chemo brain. We also learned that it may or may not happen again. That is often what we hear from the oncologist--may or may not, possibly but we can't say for sure. I will need to get an injection on Monday to help increase my white blood cell count, which was dramatically lowered by the chemo.

Irinotecan

Now for the really good news. Road Trip! Yes it's true, the eagerly awaited Pam and Steve world tour 2014 kicks off on June 19, when we board a plane bound for Chicago and parts unknown. A star-studded cast awaits your visit with lustful anticipation. I sincerely hope my wish to enjoy the company of each and every one of you is granted. I cannot think of any stronger juju that will make me well again.

 

Love you all, can't wait to be with you again. Steve, Pam, (and Caroline guarding Fort Bliss pending our safe return).

 

 

(Composed with loving care via Dragon!)

Part 21 - A Longer Stranger Trip

This will be a short chapter. It is merely intended to complete the chapter begun in my last entry. There is little new information shared here, but I feel the necessity to bring these chapters to a proper close, for the sake of continuity if little else. You may wish to read this chapter to catch up, or you may desire to skip it entirely, based on your own level of interest.

The most frustrating part of composing this journal is the seesaw nature of its telling. I have no sooner imparted some encouraging and possibly hopeful news that my bubble is immediately burst. I believe you will agree that it is difficult to produce a narrative that enthralls in this manner. Whether your interest is maintained is up to you, dear reader.

In the interest of brevity, I will recap that the previous chapter began with the sharing of the most positive news to date about MBFGC. The scans from my previous month's MRIs showed what appeared to be a stunning reduction in growth. My oncologist's enthusiasm over these latest images was such that I was excused from the following month's MRI, to be resumed eight weeks instead of four weeks in the future. I celebrated this news appropriately with friends and family.

Unfortunately it turned out to be another con job courtesy of MBFGC. Shortly after this latest MRI, I began to experience the telling signs of the return of the tumor. Ultimately, despite my best efforts to deal with it, it was decided that my return to work was not a practical reality at this time. Unfortunately I find myself with my paid leave expiring shortly, but I am hoping that this will also be dealt with in the near future.

I'm going to close out now with a few photos that will display for you the devious nature of this tricky little bastard. As you will see, the con job that created such false hope has now switched gears and is heading full speed ahead in another direction. A new chemo treatment has been started called called Irinotecan. Let's see how well this latest flavor of the month works. Another MRI in three weeks; wish me luck as always!

Love, Steve, Pam, and Caroline. Special thanks to Caroline for assisting in wading through blog formatting for this issue.

Part 20 – A Long Strange Trip

If I wrote you a story with as many twists as this journal provides, you would say that it challenges credibility. I wish that statement were true. I have never been involved in a story, true or false, which seems to change the rules even as it unfolds. Believe me when I tell you that I would much prefer a more prosaic tale. Permit me to recap the basic facts for you until now:

The brain cancer I am dealing with has undergone several different developments since my initial diagnosis. The tumor growth initially appeared to be under control with a six-week treatment of daily radiation combined with chemotherapy. This was followed by monthly chemotherapy treatments. During these treatments, the tumor appeared to be experiencing some growth, then it was thought to be in remission, then it was finally decided that the tumor was growing once again. This regimen of treatment was then changed to one using a drug called Avastin, administered through bi-weekly infusion treatments. This new drug initially showed positive results.

Unfortunately, the optimism I experienced during the initial stages of the Avastin treatment was short-lived. I have recently begun to experience diminished cognition and difficulty with written and spoken communication. These symptoms are identical to those I struggled with during the initial appearance of the brain tumor. The scheduled appointment with my oncologist was moved up to an earlier date, and it was confirmed by my doctor that the tumor has indeed resumed its growth. This was, of course, disappointing news. I have an appointment with my doctor later this week to discuss new treatment options.

These are the basic facts until now. I have little in the way of witticisms to add to the story. I have attempted to keep the mood upbeat to this point, but I may be running thin on cheery notes. I have already sneaked a peek at the upcoming chapters and they do not offer a great deal in the way of entertainment value. Unless the words "clinical trials" strike merriment in your heart.

I will spend the next few days digesting the news I have swallowed recently and planning my next steps. I feel most keenly the strain to which I have subjected my long-suffering and undeserving deserving wife Pam. I am indeed grateful for the great friends and family who have helped to ease the strain imposed by this unpleasant and unwelcome intruder.

I would like to close out this chuckle-fest with one bit of positive news in the midst of this dreary tale. The worst part of this ordeal has been the creeping dismantling of what Woody Allen famously calls "my second favorite organ." Without the entrance into my life of the miracle speech-to-text software Dragon, I would be going down on a Colt .45 pistol as you read this. However, Dragon not only permits me to type faster than I ever could (literally as fast as I can speak) but it is much more fun than this notorious-hunt-and-peck-pecker ever had reading. To close with yet another Woody Allen quote, "it's the most fun I ever had without laughing."

This entire document was composed with Dragon!

(Ed. Note: An error in page count made this a chapter page longer, so it has been adjusted to 20 pages.) 

Part Eighteen: Happy Birthday To ME Edition

Greetings to all denizens of the Blogspot! All are welcome to our semi-regular indulgence in regret and self-incrimination. We hope you have as much fun was we do! And even tho we already missed Easter . . . what’s more fun than BUNNIES?

Today we celebrate the anniversary of your beloved blogscribe entering our realm. It might be a short visit, or you may never get rid of me. But just to be on the safe side, we’re trying to put together a little hootenanny here in Chi-town to commemorate the event. I hope to forward more news ASAP.

You may have observed somewhat of a hiatus in blog publication dates recently. I’d like to tell that my extensive speaking tour has interrupted the regular flow of blog delicacies that you so breathlessly anticipate. Unfortunately, the more pedantic truth is that I am experiencing what can best be described as a kind of technical systems issue.

In the past few weeks I have been delighted to report what appears to be a near-miraculous shrinkage in my nasty tumor, thanks to the drug Avastin, which I have been receiving via semi-monthly infusion treatments. This is great news, and it has been a delight for me to share it with you. I hope to continue to dispel great news to you, which is why I am more than a little annoyed when Captain Bringdown shows up to mess with my party. It appears I may have an uninvited guest, but I hope not. In recent weeks, an old pest has shown up. This little nuisance showed up a week or so ago and began messing with certain functions that had been running smoothly since before the docs popped open my lid and got rid of big scoopfuls of stuff we don’t want or need anymore. To keep it short, some of the issues with memory and written communications seem to be back for an encore. In truth, it can be pretty goddamn annoying – it’s already taken me well over an hour to dash off this little ditty. I was always a crappy typist anyway, but this is beyond the pale.

However, thanks to the brilliance of my beautiful wife Pam and modern technology, all may not be lost! We just picked up an ingenious bit of software called DRAGON Naturally Speaking, from a company called Nuance. It is speech-recognition software, and the box it came in says “Stop Typing, Start Talking!” Sounds great to me – I hate typing, and I love talking! I've already gone thru all the setup and am already talking to my computer, along with funny looks from Pam.

Dragon NaturallySpeaking

Seriously, I feel like I've run a marathon typing this. Next time: Dragon! Thanks for all the wonderful birthday wishes and all your love and support. Youse guys is the bestest there is anywhere! (Hmm . . . computer corrected “bestest” but not “youse.”

Part Seventeen – Good News . . . No, Really, I’m Not Kidding

This week's blog is short and sweet. But it's really, really good. So good, in fact, it has puppies AND kittens.

The saga continues . . . you will recall that last month’s episode found your intrepid blogger the recipient of disappointing news, in contrast to the sunnier results of the previous month. Dr. Lee delivered the grim verdict in his usual perfunctory manner before handing me off to the wizards of infusion who would take over the next stage of my treatment. The last few weeks featured three infusions of the miracle drug Avastin® and the installation of my brand new PowerPort^©.

On Tuesday I had another date with the MRI machine (definitely not for the claustrophobic), and was spared the usual suspense by meeting with my oncologist Dr. Lee the very next day. The history of our encounters might have provided a hint of what to expect (this was the “good news” week), but I felt a foreboding nonetheless. However, the mood instantly lightened when Dr. Lee entered the room. I've told you this guy has the worst poker face in the world, and his “tell” was like a flashing billboard.

As the good Dr. Lee whipped out scan after scan, I stared in growing disbelief as I witnessed The Amazing Disappearing Brain Tumor. Where there had been big white splotches spelling out evil tumor encroachment, there was now . . . nothing. Well, OK, not NOTHING, but compared to the ever-growing spider of death I’m used to seeing, it seemed like nothing. Now, this trip has been enough of a roller coaster ride that I am cautious about getting too excited about any promising developments. But Dr. Lee confirmed that, while perhaps not meriting a “go crazy folks” Jack Buck-type celebration, this is in fact some pretty damn good news; the best I've seen since I started this ride.

Well, all right! The cancer’s not gone, but the Avastin is performing as advertised and delivering some fairly eye-popping and ass-kicking results its first time in the starting lineup. (I described in Part 15 how  Avastin works, by cutting off the blood supply of tumors and starving the little bastards.) Not arguing with results, so I'll be back in the infusion chair every two weeks for the foreseeable future. Instead of seeing me in four weeks, Dr. Lee thinks we can take an eight-week break until the next MRI.

So, what’s it all mean, Charlie Brown? This good news takes some getting used to. Maybe I can start looking at things a little more long-term. Start the down payment on those 2016 World Series tickets? OK, let’s not get silly . . . but watching a young lady pick up her diploma in a couple of years is something I consider worth sticking around for.

GOODBYE AMIGOS! SEE YOU SOON! HAHA!!

03.04.2014

04.01.2014

03.04.2014

04.01.2014

Part Sixteen – A Port in Any Storm

Welcome! Trying to brighten up the mood of the blog a bit. So, to make the Blogspot a little more warm and fuzzy, here are some kittens.

Feel better? Me too! Last week I had my second infusion treatment of the miracle drug Avastin. At that time, my nurses up on the 4^th floor decided that the new treatment would be helped along greatly if I would get a “port” implanted in my chest to dispense the drug directly into my bloodstream. This port is installed under the skin in my chest, then connects to a short tube (it’s called a “catheter,” but that word still gives me nightmares), and finally to a large vein in my heart. This makes it nice and easy for the nurses to plug me in for my bi-weekly chemo sessions instead of having to poke around for a vein that’s not wrecked already. It also can be used to take blood samples, inject contrast dye for MRI's, and other handy uses I haven’t heard about yet.

Of course, nobody mentioned that this port makes the nurses’ jobs a lot easier also. I was given what looked like a Hollywood-produced video to sell me on the idea. Wondering if I can dispense some scotch or bourbon via this device? Perhaps that idea is just waiting for the right genius to make some medical history!

So, last Friday I go down to UNM Hospital again to get fitted with my new gear. After the usual hurry up and wait, I’m finally wheeled in to get prepped for surgery. (Goodbye, chest hair.) I’m supposed to be awake for the surgery, but that plan is scrapped as soon as they start pumping happy gas into my breathing apparatus, and I’m off on my best nap in months. I’m woken in time (about 90 min, or so I’m told) for the doctor to show me his handiwork, then I’m wheeled off to the recovery room. After a while a nurse shows up, everything is disconnected, clothes back on and I’m good to go.

Pam is waiting for me with one of her oldest friends. I’m still a little woozy but I’m starved (no food or drink allowed since last night), so we all head out for something to eat. We enjoy a nice lunch, then we drop Joan off at her car to head up to Santa Fe, and we head on home. I’m home an hour or so when the drugs wear off and I am suddenly and rudely reminded that my shoulder was cut open a few hours ago. Something from my stash of pain meds washed down with a little Jameson’s helps a bit, but the recliner is where I’ll be sleeping tonight.

The next day I feel better, tho the pain meds are still my best friends. In a week I will be back at the UNM Cancer Center taking my newly implanted apparatus on its maiden voyage for another infusion treatment. Here’s hoping the Avastin does its job and we will many more visits here in the Blogspot.

As they say, hope springs eternal . . . which of course reminds me that Opening Day is on Monday! As Cubs fans, we have little more than hope, but what the hell . . . it’s baseball!

GOODBYE AMIGOS!  SEE YOU SOON!  HAHA!!

Part Fifteen - A New Path

This week, I got more familiar with the roller-coaster ride that all victims of the heinous Big C eventually get to know. In my last blog, I was all upbeat with the news from my latest scans, announcing that the scare from the MRI’s was nothing but what my doctors tagged “pseudo-progression.” Meeting with them this week, however, their tune had changed to more somber notes.

Before I continue, please allow a detour for another tidbit of Steve Bliss health news. On a Friday a couple of weeks ago, I started to notice what felt like an itchy rash on the left side of my face. By Monday, my puss was an ugly landscape of bumps and blotches and my left eye was almost swollen shut. By some miracle, I managed to get in to see my GP, who took one look at this mess, asked a few questions, and immediately pronounced: Shingles!

Thus began the latest course in my post-grad education about heath calamities that affect old-timers, of one whom I did not realize I had suddenly become. Seems most of us have chicken pox when we’re kids, and we were all led to believe that’s the end of it. Unfortunately, the virus that causes chicken pox takes up vacation residence in your system forever, and certain things – say, an immune system compromised by a bombardment of chemo drugs, among other things – can cause it to re-emerge in the form of the shingles virus. This long-forgotten family member moves back in for weeks and you can’t get rid of him. In my case, the real hideous stuff on my face subsided after a week, but I still have throbbing pain around my left eye and in the whole left side of my head. The doc gave me some anti-virals and a mild painkiller (Hydrocodone) but after a week of me bugging him for something more effective, he finally forked over a script for something called Gabapentin, a drug more commonly used to treat the effects of shingles. Unfortunately, the tiny 100mg dose he prescribed was pretty useless, but bumping that up to three or four at a pop seemed to do the trick.

LESSON: If you’re over 50, run out and get a shingles vaccination! It is fairly new, so of course check with your doc first, but I recommend it highly. Unless Halloween is coming up and you’re planning to go as The Elephant Man.

Shingles!

Thanks for your indulgence in that little sidebar. Back to our headline story, in my oncologist’s office. Dr. Lee is not his usual chipper self as he hands me copies of my latest scans in a very businesslike manner. Unlike in our meeting four weeks ago, the news is decidedly not good today. I look at scan after scan showing the ominous blob progressing forward from the back of my skull. A 180-degree turnaround from our last meeting, but before I can open my mouth to ask a question about what these new scans mean, Dr. Lee tells me I have an appointment upstairs with the infusion specialist, darts out of the room and is not seen again.

A few words about my oncologist, whose name is Dr. Fa-Chyi Lee. He is from Taiwan, has degrees from St. Louis U and UCLA and all the cred you would want. He is a squirrelly little fellow, friendly enough, speaks very rapidly, but not exactly the warm and fuzzy Dr. Wilson (Robert Sean Leonard) from TV’s House type. This is not the kind of guy I expect to hold my hand and comfort me after telling me the creature coming to murder me is making expansion plans in his penthouse apartment in my head. I don’t think a minute or two to provide a few details to my wife and me after delivering fairly devastating news is not too much to expect, do you? Dr. Lee and I may be due for a little chat. Or perhaps an email to his boss is in order. You may recall I am in direct correspondence with the director of the entire UNM Cancer Center, following my less-than-ideal intro to the facility several months ago.

Back at the Cancer Center, I finally figure out where to go next after being abruptly abandoned by Dr. Lee. It’s up to the fourth floor to begin the next episode in the battle with Moloch the Destroyer. Goodbye Temodar, hello Avastin. I included some info about Avastin a few blogs ago but I have repeated the link again below. Avastin works by cutting off the blood supply of tumors. This may slow the growth and spread of tumors. It is a new treatment which has seen some good results.

AVASTIN (click for more info)

Upstairs, I settle into a comfy recliner with a glorious view of the Sandia mountains in front of me. I’m hooked up to an IV with a saline drip for about a half hour, to prep my veins and make sure my system won’t have a problem with whatever they’re going to pump into me. Then the treatment begins, which lasts about 45 minutes. I have to be back for this every two weeks. The list of side effects from Avastin reads like one of those erectile dysfunction ads on TV, but so far, so good on that stuff.

Sitting here in my comfy hospital recliner, gazing at the Sandias, I have time to ponder what it all means. Have I just made the next step in an inexorable progress towards an inevitable destination at which all but 5% of people who begin this journey arrive? If I have, I guess there ain’t really much I can do about it. I am thankful for wonderful friends who provide mucho love and support. Some of these friends have gone so far as to urge the help of mystic “healers” who have promised to wipe out the cancer by thinking about it from 1000 miles away. Well, people believe what they gotta believe, and it all comes from love, which hopefully everyone believes in. I am happy for anyone who is upheld by some kind of faith, even if embracing that faith does not come easily to me. I believe in the power of love, and I feel that in abundance.

GOODBYE AMIGOS! SEE YOU SOON! HAHA!!

2.04.04 Top = Front

3.04.04 Top = Front

2.04.04 Front from Rear

3.04.04 Front from Rear

Part Fourteen - Oscars etc.

Happy Almost Fat Tuesday! We try to celebrate every year by dining out at one of the few restaurants in ABQ featuring this fab cuisine, popping something from my modest collection of Cajun/zydeco music into the CD player, and/or finding a good New Orleans-themed movie to watch. (The Big Easy is the obvious choice, but there are others we like.) Laissez les bons temps rouler!

I’m obliged to drop in a few words about the stuff in the title of this blog. If you read the last entry, you know I received encouraging news at my last MRI scan. My mind was at least temporarily put at ease when what my doctors believed might be cancer growth turned out to be “pseudo-progression.” So that lightened the mood somewhat, tho it goes back into suspense theater again with new MRI’s on Fat Tuesday of the upcoming week.

I barely had time to celebrate the good news when I started to feel weird last weekend. I was feeling pain around my left eye and in my left ear, and had developed what looked like a hideous giant zit on my left nostril. By Monday everything was worse, and I was miraculously able to get an appointment with my GP. He took one look at me, asked about the symptoms and nailed it on the spot: Shingles! I knew nothing about shingles, but my simple explanation is this: You get chicken pox when you’re a kid, it goes away but the virus stays with you forever. It’s not all that uncommon to have some kind of re-emergence in the form of shingles, but it generally occurs in only 1-3 people per 1000 under the age of 65. Certain things can bump up your odds of getting it if you’re younger than this – such as a compromised immune system caused by carrying little dark passengers like mine around with you.

Shingles takes the form of an ugly, nasty rash around the midsection in most people. A smaller percentage gets it all over your face – excuse me, all over one side of your face, which is weird. By Tuesday night I looked like the arch-villain Two-Face from the Batman series. It got worse than the photo I’ve included, with my left eye completely closed and blisters on my face making it look like the worst case of pizza-face acne ever. At the time of this writing I’ve had it about a week. I can see out of my left eye again and much of the rash has subsided, tho the big ugly nose zit is still there and the pain emanating outward from my left eye won’t go away. Got some anti-virals and some hydrocodone from the doc, but my stash of oxy left over from surgery is also coming in handy. There is an effective vaccination which is, unfortunately, useless once you already got it. I urge all of you to get the shingles vaccination today!

I didn’t really want to use up all my blog time on this, but this blog was started to communicate news about MBFGC and related health issues, so I feel obliged to keep you informed about it, and I am always gratified by your interest and concern. I hope you can indulge me a few comments about the Oscars tomorrow night.

I’ve been into movies big time since I was a kid. Everyone in my family was. On weekends we would “go to the show,” and everyone who grew up in Chicago is familiar with that phrase. It mattered little what movie was playing, nor even what time the movie started. We would just go to the movie and watch the next showing until “the part where we came in,” and if we liked the film, we’d watch that second viewing all the way to the end.

I became more seriously interested in movies after high school. I found the most interesting part of my initial semester of college to be the film society on campus, where I was exposed to foreign language films. Blowing off college after one semester, I headed out to Berkeley CA and spent about a year immersed in the big candy store of all the college film societies and revival/repertory theaters, soaking up all the international, experimental, and classic American cinema I could find. I came back to Chicago for the usual stupid reasons (little head leading the big head), but continued to mine the same kinds of venues in Chicago to enthusiastically continue my cinema education. I eventually made my way back to school, working my way thru several institutions before earning a useless BA from the Radio/TV/Film division of Northwestern’s School of Speech (now Communications).

Sorry for the biography; will attempt to fast-forward thru the boring stuff. I spent over 25 years in marketing and sales in motion picture distribution, cable TV, and the home video industry. Left the home video industry in the face of changing technology and diminishing opportunities, but had the impeccable timing of attempting to launch some new media ventures in the teeth of the 2008 recession, so the last five years have found my fortunes plummeting into survival mode. An unexpected visitor last year has helped to further stall my career progression.

In any event, my point is that I have loved the cinema from an early age and have been fortunate enough to find employment in related positions for much of my adulthood. Though I feel fortunate to have long ago discovered the world of international cinema, I am no film snob. I still consider American cinema to be the innovative leader that has historically been the most influential in shaping the art form. However, as we have watched American industry begin to lose sight of the principles and objectives that made it a world leader, the same afflictions have affected the American cinema. It has always held a unique position between art and commerce, but it seems that in recent years artistic decisions are influenced by commercial considerations more than ever. This is evident nowhere more than in the annual Academy Awards show, a grotesque orgy of shallow emotions and phony sentiment by which nobody but the most cynical can avoid being nauseated.

In recent years I have been spared the most horrific moments of this kitsch-fest by the magic of TiVo, but I don’t even have enough interest to bother setting the DVR this year. I can find out all I need to know without gagging in two minutes on the internet. In the meantime, there are so many great films emerging on international screens. Just recently I watched an amazing film called Wadjda, which is not only the first feature film shot entirely in Saudi Arabia, but the first film made by a female Saudi director. It is funny and emotionally satisfying and easily superior to any of the films nominated for the Best Picture Oscar. Many of these films can be viewed easily via the many video streaming services available, but most people are not aware of these treasures hidden in plain sight. I’m going to start recommending a few of these in future blogs. Perhaps some of you will find something to enjoy in these suggestions. I am certainly interested in new films that any of you can recommend.

GOODBYE AMIGOS!  SEE YOU SOON!  HAHA!!

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!!