Friday, December 21, 2012

The gift that keeps on giving


I probably shouldn't write this. But it's 1:30 in the morning and I can't sleep. So what the hell.

I had a truly unique experience this week. Three times.

On three separate occasions this past week, three different groups came to Cindy and I with donations. As in large checks (or, in the case of one, bundles of gift cards to local stores). And it was more than money. There were hundreds of dollars worth of groceries, more gift cards, even a computer. I am absolutely stunned by such generosity, particularly in these difficult times.

And let me state, unequivocally (as we will communicate to the groups as well), that we could not be more honored, more grateful, or more humbled by these gifts. If you're reading this and you were one of the many generous donors, there is a possibility that the words that follow will indicate to you that we are in some way upset by these gifts. This couldn't be further from the truth. Please believe me when I tell you that we are absolutely in awe of the kindness that has been bestowed upon us.

Here's the thing: I've sorta been working under the understanding that, all things considered, Cindy, the kids, and I were doing okay. Financially, sure, things are tight without two full incomes anymore, but we're doing fine. Health-wise, I'm just a few days into my month of recovery and, frankly, feeling pretty good. Hell, Cindy and I went to lunch at the Fours the other day. I put pants on and everything. 

How can one juxtapose dozens of people thinking I'm so seriously ill that my family requires financial assistance with lunch at the Fours? Or even Chipotle? 

The only real complaint I have is about my hair. It was never that great to begin with--my mother let me go to school for 18 years looking like Bjorn Borg circa 1974--but the chemo has done weird things to it. It's not like a Brillo pad anymore…it got weirdly soft and airy. I look like Moses right after he saw the Burning Bush.



So, as I said, I had few complaints about how things were going. Everything was under control, finance-wise, health-wise, household-wise, etc.

Then one of these gifts comes in. Then another. Then a third. 

And that's when it dawned on me: I'm the only person in the world who can't see how screwed I am.

(Again, kind donors, it's not your fault that this is where my mind went. And I pray you don't find me ungrateful for going there)

I mean, I must be in some world-class, North Korea-level self-denial about my foothold on reality. And Cindy, that scoundrel, is complicit in this self deception.

For so many to give so much to us, giving things they themselves surely need for their own families, are they seeing something that I'm in denial about? Do they see that I'm standing on the edge of a cliff when I feel like I'm, at worst, tip-toeing carefully around a heavily-sedated tiger? 

What's the reality and what's the fantasy? I have to say that the events of the past week have shaken the rust off of the part of me that should've been scared shitless all along. Maybe that's good. Maybe all of the silly blogs and cutesy commentary about Bob Dylan was just a wall I put up between how I wanted to feel (Brave? Relentlessly positive?) and how I should feel (So scared that I can't sleep…hopeful but cognizant of the long odds).

I guess I don't know which side of the fence to fall on anymore. And it probably doesn't matter. The cancer doesn't care either way.

So I guess I'll end this by repeating that we are humbled and awed by the generosity bestowed upon us. And scared out of our minds.

And Merry Christmas.

Tuesday, December 4, 2012

Radiation by the numbers


9 - number of radiation sessions remaining

0 - number of sessions of chemotherapy remaining in this session

10 - approximate number of minutes in each daily radiation session

21 - number of hours those 10 minutes caused me to sleep last Tuesday

0% - how much I believe in the viability of Discovery Channel's new show "Amish Mafia"

14 - number of times, on average, I have to tell someone my birthday during a visit to the cancer center

1871 - what I've changed my birth year to when answering the "What's your birth date" question, just to see if anyone notices

65% - the chance that, at any given time, "Casino Royale" is on TV since I got cancer

4 - the number of feet, sideways, our cat jumps if you startle her. She moves like a rook


Chemotherapy music reviews


LED ZEPPELIN - CELEBRATION DAY:
I admit, I was not expecting big things from the long-awaited document of their recent one-off reunion concert, but it's pretty good. The biggest surprise is that the star of the show is Jason Bonham, son of the late Zeppelin drummer John Bonham.

Three doses of chemotherapy



THE BOB DYLAN PROJECT (continued)

My journey through Bob Dylan's entire catalog, in order, continues...

And then, finally, we get a band. Well, if not a band, at least session musicians. And electricity! Dylan followed up his career-starting string of one-man-band albums with two of his most heralded records, both largely including a legion of session musicians: "Bringing it All  Back Home" and "Highway 61 Revisited."

What you learn on these records is that Bob Dylan is angry. Or, at least, extremely confrontational. Both records extend the middle finger to the coffeehouse set who'd prefer Dylan never plug in or get too big. Both include huge kiss-offs to anyone within arm's length: old girlfriends, the press, etc.

In fact, if you were unfortunate enough to have dated Bob Dylan during his heyday, he probably wrote a song about how much he now dislikes you. Think of him as the rich man's Taylor Swift.

Monday, November 5, 2012

More shallow thoughts

I went to the dentist this past Saturday. The hygienist (who I've known for at least 20 years) asked me if there were any changes to my medical history. I told her that yes, actually, there's a rather major change. 

"I'm having gender reassignment surgery," I said. She made the rarely used "I don't believe you and I'd like to punch you" face (last employed by Joe Biden during the Vice Presidential debate). 

"Just kidding, silly, I have cancer," I said.  I think she was still picturing what I'd look like as a woman. 

Anyway, as I embark today on 25 days of chemo and radiation, here are more thoughts collected in, as Bob Ryan might say, the desk drawer of the mind...

  • Can you imagine the special little hell that living in Ohio must be in early November? Mailboxes overflowing with political flyers, constant robocalls, and endless attack ads on television...it's almost worse than living in Ohio.
  • And just how did Ohio become the fulcrum of our national electoral process? This presidential race is so close, there could literally be one guy in Ohio whose vote decides the fate of trillions of dollars, the lives of our soldiers, the direction of the world economy, the futures of abortion, healthcare, welfare and immigration law, among other nation-defining issues. All decided by a person who couldn't find a way to get out of Ohio.
    • I don't understand why this isn't a topic of constant national debate: what in the hell is a grape nut?
      • On Halloween, my brother-in-law and his wife brought over their adorable new baby. While we were visiting with them, our new kitten, who is roughly the same age as the baby, was jumping around, playing, eating, and executing guerilla-style attacks on the dog. A baby can't do any of those things. It never occurred to me that, when we're babies (or in Congress), animals are far more advanced than us. I'm not sure what this means, but I think it might portend the election of our first cat president someday. "I, Mr. Snuggles, do solemnly swear that I will faithfully execute the Office of President..." 
        • The people who make Red Berry Special K have a serious problem with their red berry to Special K ratio. Nothing gets the day off to a bad start quite like a bowl of 2,000 Special K flakes with one red berry. I want that bowl to be lousy with red berries. This is why the terrorists hate us.
          • Our local supermarket chain is called Johnnie's Foodmaster. It was just announced that Johnnie's, one of the last family-owned chains in the state, has been sold to Whole Foods. That's quite a transition. Johnnies is sort of run down and crappy, and the meat department clearly relabels old unsold meat with new dates (at least at our location). I cannot picture this place as a Whole Foods. I'm pretty sure I won't be allowed to shop there anyway, as I don't own any yoga pants. 
            • Cindy and I went to a nearby Whole Foods to check out the prices and selection, an experience I will sum up thusly: no Oreos or Doritos, but 15 different kinds of salmon. It's amazing to me that so many people want to shop at a place where they pay a premium for an all-organic selection that's focused on production methods that preserve the environment, then load up their purchases in a Lexus SUV the size of a condo.
              • Congratulations to Twix for winning the title of "Most Valuable Halloween Candy" for the 15th consecutive year. That said, I've noticed that their "Fun Size" is steadily getting smaller. It's now more like "Meh" size.

              Chemotherapy music reviews

              NEIL YOUNG & CRAZY HORSE - PSYCHEDELIC PILL:
              As a lifelong fan of Neil Young, particularly his Crazy Horse albums, this was a sad experience. What do you get when you combine a rusty old Crazy Horse with Neil Young's increasingly cringe-worth lyrics (sample verse:
              "I used to dig Picasso
              I used to dig Picasso
              Hey now now, Hey now now 
              I used to dig Picasso")?

              You get two doses of chemotherapy


              MIGUEL - KALEIDOSCOPE DREAM:
              I seriously doubt that I've spent more than ten minutes listening to R&B music since "Thriller" came out. But, on a recommendation, I checked this out. It's pretty fantastic. Warning: there are some lyrics, and song titles, so explicit on this album that I got the vapors and passed out on my fainting couch.

              3.5 doses of chemotherapy


              THE BOB DYLAN PROJECT (continued)

              My journey through Bob Dylan's entire catalog, in order, continues...

              Dylan followed his debut with "The Freewheelin' Bob Dylan" (1963), "The Times They Are A-Changin'" (1964), and "Another Side Of Bob Dylan" (1964). Like the debut, the songs feature Bob Dylan mostly without accompaniment (just his guitar or piano and harmonica), and all are filled with songs that are now part of Americana itself: "Blowin' in the Wind", "Masters of War", "The Times They Are A-Changin'" and "My Back Pages," among many others. 

              I've come to the realization that my experiment--to better understand what makes Dylan's music important, and to figure out how one evaluates a new album by an acknowledged master--is perhaps fatally flawed. One simply cannot listen to "The Times They Are A-Changin'" or "Blowin' in the Wind" with fresh ears. It's impossible to recreate what it meant to hear these songs, in the context of the times, and the impact they had not just on lovers of music, but on the very conscience of the nation.

              The closest I can come to understanding it is this: before Dylan's early records, the Beatles wrote only charming little pop songs about girls and other sunny topics. Then Lennon heard Dylan, and realized that there was a whole other purpose for music. Without Dylan, we'd perhaps only know the Beatles as that minor band that wrote "I Wanna Hold Your Hand" and "Love Me Do."

              Coming soon, when does Dylan start working with a band (or THE Band), and can listening to Dylan's catalog ever sound like a new experience?

              Tuesday, October 23, 2012

              Taking inventory

              And then, on top of everything else that happened, the cat died. She died sitting on the passenger-side seat of Cindy's car, a place where I have nearly died on countless occasions. The way Cindy drives makes Richard Petty look like a blue-haired leaf peeper.

              A few days later, Cindy adopted a new kitten named Stella, a name that Sam now screams Marlon Brando-style 53 times a day. 



              Frankly, I was a bit unnerved by the speed with which Cindy moved from dead cat to replacement kitten. On a hunch, I checked her computer and, sure enough, found that she has already bookmarked Match.com, J-Date, and Christian Mingle. This broad works fast, just like my mother warned me.

              Phase one of my scrap with cancer--four sessions of chemotherapy over 8 weeks--is now complete, but the doctors told me that the chemo-groundhog saw his shadow, meaning five more weeks of chemo and radiation.

              After the initial round of chemo, the doctors took a CAT scan and at PET scan to see how we did. The surgeon held his cards close to the vest, noting that things have definitely shrunk but that there are still potential problems to be encountered when/if they cut me open. He said that, because of the position of the cancer, this will be both a stomach and a chest surgery. "That sounds painful," I said. "It is," he replied, "but the scars will be awesome. You can scare children at the beach."

              The oncologist, on the other hand, was ecstatic with the scans. He and I even attempted what will forever be known as the world's most awkward high-five. Thank God it wasn't on film.

              Then, I was quickly ushered to the radiation lab where two blonde technicians said "We need to tattoo your chest."

              "Okay, let's make it Jesus riding a T-Rex," I said. "And have him holding an American flag in one hand and an AK-47 in the other. Jesus, I mean, not the T-Rex. The T-Rex's arms are too small."

              Instead, they stripped off the top of my hospital gown and tattooed five little dots that they'll use to aim the radiation machine. Still, I get to say that I got five tattoos in one sitting, so I have that going for me.

              In the meantime, I'm feeling great. Sam, after another brief hospital scare, is doing great as well. Cindy and Sara are hanging in there. I can't thank you all enough for the positive words, thoughts, cards, calls, and packages. It's quite humbling to be the object of so much kindness.


              Sunday, October 7, 2012

              Let's all go to the hospital!


              Let me tell you about my wife. This week (today, Sunday the 7th, to be specific), marks our 17th wedding anniversary. Here's how Cindy spent the days leading up to the happy occasion:


              • Friday, 9/28: Sam wakes up, comes downstairs, and immediately starts coughing up blood. Cindy rushes him to the local emergency room, from which he is transfered to Children's Hospital in Boston. Later that day, the doctors determine that collateral arteries (these are a side effect of his unique heart condition) are leaking blood into Sam's lungs. Sam is intubated and a procedure is performed to seal off those collaterals.
              • Saturday, 9/29 - Sunday, 9/30: Sam remains intubated, asleep, and chemically paralyzed as his body resists the removal of the breathing tube. This is a child who once walked mere hours after an open heart surgery. Sam is the medical bounce-back champion of the universe. Needless to say, the fact that he seems to be struggling scares the living shit out of us.
              • Monday, 10/1: a brave resident decides to extubate Sam in the middle of the night. He responds, but still seems to struggle. He's clearly not himself and he needs constant oxygen. Cindy and I are convinced that something is still wrong with him. That evening, I go home, as I had every night since this started. I have a conversation with God that I am not particularly proud of and that I would not care to repeat. Cindy spends her 100th straight hour in the hospital.
              • Tuesday, 10/2. I have my fourth chemotherapy appointment, rendering me unable to go to Children's anymore. Cindy is now caring for Sam at his side and advising me over the phone on which meds to take to deal with the side effects of the chemo.
              • Wednesday, 10/3 - I start feeling worse. Sam slowly starts feeling better.
              • Thursday, 10/4 - Bouce-back Sam finally shows up! Sam and Cindy come home. 
              • Friday, 10/5 - I can't eat. I can't drink. I can't get out of bed. Sam is much better, but still fragile. Cindy, exhausted from a full week in the hospital without respite, now has two patients at home to nurse back to health. Then, despite pounding Gatorade directly through my feeding tube, the Visiting Nurse orders me to go to the emergency room due to dehydration. I secretly give her the middle finger when she's not looking. The ER lubes me up for a couple of hours and, mercifully, decides not to admit me. I call home, wake Cindy up, she wakes Sam up and they both pick me up at the hospital (Sara, thankfully for her, was away with a friend). I immediately start making up excuses for my German oncologist, who is going to angrily say "Your feeding tube is your mouth - use it!" an annoying number of times when he accosts me about going to the emergency room.
              • Saturday, 10/6 - I start to feel a little better.
              • Sunday, 10/7 - Our anniversary arrives. For a present, all I can give Cindy is a day of me eating and drinking semi-normally. She gives me a completely awesome Weber Smokey Mountain Cooker Smoker (I had told her earlier in the week that my chemo nurse was raving about the smoked meats her husband made). I immediately contemplate brisket. We promise to do something nice for each other when things are less crazy. When that might be, I have no idea.
              When people use the phrase "Words cannot describe..." to start a sentence, it's almost always a lie. The words that describe that which "Words cannot describe" are usually the words that immediately follow "Words cannot describe." It's a cliche meant to cheaply add weight to something that's usually sappy and melodramatic. What I'm trying to say is, I do not take the use of the phrase "Words cannot describe" lightly. That said...

              Words cannot describe my admiration and love for Cindy. Nor can they describe how sorry I am that I am the unwitting instrument of her pain. I know that I have only a cursory understanding of the level of suffering, hurt, anger, and worry that plagues her every day, every hour. She hides it well, but you can see it in those rare moments when she's pleasantly distracted by visiting friends or a funny moment on TV: true happiness is so rare that, when it comes, she beams again. 

              Mostly, though, there is just the courteous covering up of a sadness she cannot escape, and which only announces itself when her considerable armor cracks for a moment. These occasions are rare, as she is ever mindful of the impact her sadness will have on the kids.

              Cindy is the bravest, kindest person I have ever known. I would, quite literally, be dead if not for her. She didn't deserve to have a son born with a bum heart and a special brain then, and she doesn't deserve a broken husband now. I swear to God, if we escape this thing, I will exist only for her happiness. She deserves nothing less.

              And there will be much smoked meat on the table.

              Wednesday, September 19, 2012

              chemo #3

              My third chemo treatment has come and gone and now I'm just sitting in this chair, waiting to feel like crap. Chemo is not nearly the fountain of everlasting joy I thought it would be. Here is an abridged list of things I'd rather do than chemotherapy:

              • Watch any show that Cindy or Sara DVRs. I know more about wedding dresses now than Vera Wang
              • Remove any finger from my left hand
              • Moderate a 5-minute debate between a Tea Partier and an Occupier
              On the plus side, this was the third of four scheduled chemo sessions, at least for this initial phase. After the fourth session, we'll do new CAT and PET scans to see if things have shrunk enough for surgery. That's about it for the medical update. Here are some random thoughts I've put in the drawer since the last blog:
              • When I pass a speed trap and I'm NOT speeding, I always wonder if the policeman is proud of me. That's normal, right?
              • At this point, I have to go to the Cancer Center just about every day, even if it's just for five minutes (to check vitals, to give me a shot, etc.). I've started bringing Sam to these appointments, and he's already become the Mayor of the Cancer Center. This happens everywhere he goes - school, church, the grocery store, etc. Sometimes I worry about his future, about how he'll cope with a cruel world when, eventually, he's on his own. Then I remember this secret power he has to endear everyone in his proximity to him, and I don't worry so much. 
              • What would happen if the man who inspired Adele's breakup record started dating the woman who inspired Bon Iver's breakup record? Billion dollar reality TV idea.

              [What follows is all music related. No one would blame you if you stopped reading now.]


              Chemotherapy music reviews

              As always, please note that all of these albums were listend to while I was being slowly poisoned.


              MARK KNOPFLER - PRIVATEERING:
              Immaculate guitar playing. Soulful vocals. Zero goosebumps

              I give it 2.5 doses of chemotherapy: 


              GRIZZLY BEAR - SHIELDS:
              My music-loving life if cursed. Every time I discover a band whose music I love, their next album inevitably disappoints (I'm looking at you, Badly Drawn Boy). Shields isn't as accessible as their breakout, but it's still pretty damn good.

              3 doses: 


              BOB DYLAN - TEMPEST:
              No artist confuses me more than Bob Dylan. Every time I listen to one of his universally acclaimed late-career albums, it fails to move me. But it's Bob Dylan...I must not be getting it, right? It reminds me of this story my father told me once: he went to see this abstract play which left him conflicted and confused. He then noticed that the author John Updike was sitting in front of him, so, when the play was over, he tapped the author on the shoulder and said, "Mr. Updike, did I like that?"

              That's how I feel after listening to Dylan. So, instead of rating this record, I've decided to embark on a project. I'm listing to his entire catalog, in order, so that I can try to unravel this guy. I started with:

              BOB DYLAN - BOB DYLAN
              Two things are noteworthy about this album of mostly covers of folk and blues songs:

              1. His singing, at times, is absolutely fierce. This is ironic, given the reputation of his vocals later in his career. He sounds like a man exploding with ideas faster than he can get them down on tape.
              2. I read some research about the record and learned that Dylan copped most of his arrangements on the covers directly from a contemporary folk singer, Dave Van Ronk. One can't help but wonder if Van Ronk would have become the household name that Dylan became if he had Zimmerman's wherewithal to adopt a snazzier stage name. Dave Van Halen, perhaps, or maybe Dave Van Gogh. Reminds me of the passage in The Rise and Fall of the Third Reich, where it's pointed out that Hitler's original last name was Schicklgruber. To paraphrase that book, can you imagine the world being conquered by a man named Van Ronk?





              Tuesday, September 4, 2012

              Mistakes...I've made a few

              If there's one thing I learned during this process, it's that things change very quickly. I went from feeling the best I've felt in months last week to spending yet another night in the hospital this weekend. For me, it seems hydration is everything and when I get even a little dehydrated, I end up with another addition to my bizzarre hospital roommates collection (roommate number 4, heretofore known as "Guy who looked like Charles Manson", was repeatedly scolded by hospital staff for stealing ice cream).

              You can't see it, but Cindy is reading this and shaking her head. She, in addition to being an incredible wife and friend through all of this (not to mention de facto single parent of two kids), has also gladly taken it upon herself to become my own personal Nurse Ratched:



              And her constant refrain is "drink!" As such, when I end up back in the hospital because of dehydration, there is a period of "I told you so" finger wagging from Nurse Cindy. I can't blame her. It is, in many ways, far more difficult to be in her shoes than it is to be in mine. She sees things that I can't see, like "You're not drinking enough" or "There's a huge stain on that shirt."

              So I'm trying to be better about it, drinking more Gatorade than should be allowed by law. 


              Context

              I've been thinking about context lately. As we recently saw at the RNC, the GOP basically took an out-of-context fragment of Obama's "You didn't build that" statement and made it the platform of their entire convention. Even Karl Rove must've thought that was a stretch.

              You see, context means everything. See, for example, these two ways that you could interpret my meeting with my oncologist this morning:

              INTERPRETATION A: A German doctor yelled at a Jew, then sent him to be poisoned.

              or

              INTERPRETATION B: Dr. F. gently admonished me for not drinking enough fluids, then escorted me to my chemotherapy session.

              You see? It's all about context.

              Hospital movie reviews

              We've previously discussed the hell that is hospital room television. I've decided to make lemons from that lemonade and start issuing capsule reviews of the movies I am subjected to during my visit.

              J. EDGAR: Not bad, considering it was directed by a man who just lost an argument with an empty chair. The fact that such a bloated lunatic (Hoover, not Eastwood) had so much power in this country would seem laughably impossible if not for the existence of Newt Gingrich.

              TRANSFORMERS: DARK OF THE MOON: Not to put too fine a point on it, but 30 minutes into watching this movie, I was praying for a meteor the size of a Buick to land on my head. No God that I believe in would ever have allowed this movie to happen. My faith is shaken.

              Chemotherapy music reviews

              Hey, why not. I'm sitting there listing to this crap, I might as well bore you with my opinions on it. Some of what I listen to is old, some is new. Please note that all of these albums were listend to while I was being slowly poisoned.


              REDD KROSS - RESEARCHING THE BLUES:
              Not bad for a crunchy rock record. My only recommendation is that they should stop researching the blues and start researching the Replacements. OOOOH BURN!

              I give it 2.5 doses of chemotherapy: 




              ARIEL PINK'S HAUNTED GRAFFITI - MATURE THEMES:
              I can appreciate something that's weird, interesting, and original. But that doesn't mean I want to listen to it again. That sums up this record for me.

              2 doses:



              WYE OAK - CIVILIAN:
              Amazing. Best record I've heard in ages. Unique instrumentation, a fascinating voice. Terrific record.

              4 doses:


              Here's my favorite song from the record, "Two Small Deaths":



              That's all for now. Let's hoist a Gatorade together sometime!

              Tuesday, August 28, 2012

              Uncooperative white blood cells hand me the world's greatest doctor's order

              Yesterday's regularly scheduled chemotherapy session was canceled. It seems my white blood cell count has not recovered sufficiently from the last session, making chemo too dangerous. This is not bad or good...it just happens sometimes. We'll try again next week.

              The good news is two-fold. For one thing, I have been able to eat normally and feeling fantastic for about four days now, and yesterday's chemo reprieve presumably presents me me another week of feeling (and eating) good.

              Here's the best part: given my low WBC count (and the danger of infection that comes with it), along with my reborn ability to eat, I have been given what must be the greatest order from a doctor ever received. What follows is a list of things I am forbidden to do, as they carry with them a risk of infection:

              • Ride the MBTA
              • Go to Walmart
              • Yard work
              • Clean the cat's litter box
              • Clean the dishes
              • Clean anything at all, for that matter
              • Watch "Toddlers & Tiaras"

              And here is the list of things I am obliged to do:

              • Eat anything and everything I can, the fattier, saltier, and meatier the better

              Um...okay. If you insist. 

              So thank you, white blood cells, for making one man's gluttonous dreams come true. In closing, here's a summary of every conversation between my wife and me over the next seven days:

              Cindy: "Josh, could you..."

              Josh: "No, doctor's orders. Sorry. However, I'm ready for another quarter pounder and milkshake."


              Thursday, August 23, 2012

              Just a simple trip to the hospital

              Wow, where to begin. Since I last wrote I've had two stays in the hospital, dozens of injections, countless pills, a team of doctors poking and prodding me, and a blood transfusion. One more hit of steroids and Mitt Romney could've entered me in the Olympics and then claimed me as a tax deduction.

              I won't get into all of the gory details but, in summary, my "simple" procedure that should have kept me in the hospital for four days turned into two weeks of hell. When I finally got out of the hospital the first time, I had my first round of chemo, then ended up in the emergency room with persistent nausea and vomiting--the exact same thing happened to me when the Red Sox hired Bobby Valentine--which turned into another few days in the hospital. 

              Alas, I have come out the other side. I now eat almost exclusively through a tube in my stomach which, as you can imagine, is just super! And I would've written an update sooner, but I'm suffering from what my dad calls "Chemo-brain", which is this weird state of confusion, anxiety, and forgetfulness you fall into after chemo treatments. I believe another term for this is "Kardashian."

              Anyway, here are some random thoughts about the past couple of weeks that I've collected for your horror and amusement:

              • I had three roommates during my stay at the Brigham:

                  1. The first one was "Guy Who Grossly Overstates His Pain." When you're in the hospital, they're constantly asking you to rate your pain on a scale of 1-10. This guy was always saying "9" or "9.75". Mind you, "9" on that pain scale is roughly the equivalent of being hacked to death by a machete while you're on fire. He didn't sound like much of a "9" when he was ordering takeout from Legal Seafoods, I can assure you. 
                  2. The second one was "Nice Guy Who Got Hit By A Car"
                  3. I had my own room for a day then, at 3:00 AM, the nurse knocked on my door to tell me that I was getting a new roommate right away. I asked if it was the guy who had been screaming for the past three hours. "No, it's his roommate," she told me. Anyway, he was a nice enough elderly man whose first words to me, at 3:12 AM, were: "I just learned that Eisenhower once had to be treated for ingesting rat poison." True story.

              • There is an epidemic sweeping across the nation's hospital rooms: substandard television remote controls. As such, when you find something even remotely reliable on TV, you leave it there. This is how I managed to watch approximately 70 hours of the Olympics. And if I learned one thing from that experience, it's this: the vast majority of the Olympics sucks.
              • Weird things happen to you in the hospital if you're there for more than a couple of days. After the initial 48 hours or so, the anesthesia wears off and the pain meds fade away and you regain some clarity. And with that clarity comes the realization that you're in some sort of horror movie where they won't let you eat, where you cannot sleep for more than one hour without being woken up for vital signs or an injection, where you hear random screaming from far-off corridors at all hours of the night, and did I mention the remote control? I'm not too proud to admit that, by day five, I had a legitimate mental breakdown. I was a blubbering bowl of jello. Here is a sampling of things that made me cry during days 5-7 at the Brigham:
                • The final scene of "Dodgeball"
                • An infomercial for the "Insanity" workout
                • The whistling scene at the end of "The Muppets"
                • The existence of synchronized diving as a sport
              • In a true testament to the power of marketing, my TV/hospital room captivity exposed me to the new Taco Bell Cantina Bowl commercial no less than 437 times. I am absolutely obsessed with eating this thing but, sadly, it's not in the cards. So, if one of you would kindly eat one (with chicken, and no guacamole) and let me know how it is, in excruciating detail, I'd appreciate it.
              • As with my mother's fight with cancer, our family has been overwhelmed by the kindness of the people around us. Unlike my mother's fight with cancer, however, I cannot eat all of the amazing food that people have sent to our house. And, somewhere, my mom is laughing her ass off at that.
              That's all for now. Thanks, as always, for your kind thoughts and words.



                Wednesday, August 1, 2012

                Shallow thoughts

                Perfectly safe

                I had a PET scan last night at about 10:30. The technician, after explaining that I was about to be exposed to an amount of radiation that would give Karen Silkwood the vapors, tells me this: "It's perfectly safe. But don't go near your kids for at least six hours."


                "Perfectly safe" is the new "incredibly toxic".


                On food and Fox

                Naturally, the events of the past two weeks have me thinking a great deal about my mom (for those who don't know, she passed away from pancreatic cancer a couple of years ago). As I was sitting as still as possible during the PET scan, I remembered that my mother, while in the late stages of her brawl with cancer, would spend her days watching the Food Network (though she couldn't eat) and Fox News (though she was an even bigger pinko, socialist, commie liberal than I am). It never occurred to me to ask her why, but I think I understand it now: as the end drew near, she took comfort from the fact that she would soon no longer have to breathe the same air as Guy Fieri or Sean Hannity.


                Thing One and Thing Two

                One of the hardest parts of this process, of course, is in ushering two twelve-year-old kids through it. Sam, whose cognitive disabilities make it difficult to know how much of this he understands, periodically buries his head into my chest while rubbing my belly and saying "I'm worried about you." Otherwise, his energies are spent eating enormous quantities of food and hating Josh Beckett.

                His twin sister Sara is a different story. A day after we broke the news to her, she (with the help of Cindy's parents) went to the mall and, with her own money, purchased an array of items with which she has created a sort of portable healing station. Each night, she sits me down by her table, on which she has arranged a series of scented lotions and oils, candles, medicinal herbs, various antioxidants (such as garlic and ginger), and other momentos she deemed as spiritually important (a necklace from my my mother, the satin bag containing the glass I stomped on during our wedding ceremony). She then runs me through the paces of a meditation and yoga session she developed, complete with a soundtrack of singing bowls and Tibetan throat singers.

                It's both a sad and proud day when you realize that you're intellectually and emotionally inferior to your own child. What an amazing kid.


                So-so news & good news

                Interesting developments today. On the down side, my ability to eat solid food is changing and changing rapidly. As recently as last week, I went out to lunch with people from work and easily wolfed down a sandwich and fries. Over the weekend, I noticed that my ability to eat solids was greatly reduced. By this morning, it's clear that solids are completely out of the question. I'll spare you the details of how I learned this.


                As luck would have it, we had a meeting with the surgeon scheduled for today. I explained the situation to him and he decided that we need to move rather aggressively. So, the plan now is that I will get a port put in (through which I will be administered chemo) and a feeding tube (through which I will be administered tequila) on Monday. The reason for the feeding tube is that I need to maintain my caloric intake (particularly in the form of protein) in order to withstand the chemo, and I am no longer able to do this through my word hole. All told, this will involve 3-4 days in the hospital.


                Shortly thereafter, we'll start some form of chemo, followed by  daily chemo and radiation for five weeks. Then I recover for five weeks, followed by surgery to remove my stomach, part of my pancreas, and some other assorted pieces of plumbing.


                Please, everyone, do yourself a favor. The reason I'm in this mess is, basically, heartburn. I've had a low level of heartburn and acid for years. It was never anything that a couple of Tums couldn't handle, and certainly nothing I ever felt required a doctor visit. I ignored it. Now I'm screwed. Please, if you have those symptoms, learn from my mistake. 


                Monday, July 30, 2012

                Live blogging from the pit of my stomach

                PREGAME

                ANNOUNCER 1: We're coming to you LIVE from the living room, where Josh and Cindy are going through their final preparations before what could be the biggest appointment of their lives.


                ANNOUNCER 2: But you wouldn't know it.


                ANNOUNCER 1: No you would not. We're getting unconfirmed reports that they're preparing for this monumental event by watching....wait for it....The Real Housewives of New Jersey.


                ANNOUNCER 2: Talk about a couple of cool customers.


                ANNOUNCER 1: Or a couple of people in the throes of denial.


                ANNOUNCER 2: [chuckles]


                ANNOUNCER 1: [chuckles]


                ANNOUNCER 2: Let's throw it down to our sideline reporter who's standing by with Cindy now.


                SIDELINE REPORTER: [points microphone at Cindy] Quite a scene here in the living room. Cindy, tell us how you're feeling.


                CINDY: F*&K YOU I HAVEN'T HAD MY COFFEE YET!


                SIDELINE REPORTER: Let's get a word with Josh. How are you dealing with the pressure of today's appointment?


                JOSH: We're just trying to take it one day at a time. We've worked so hard to get to this moment and now we just have to OH MY GOD HOW CAN THERESA POSSIBLY WEAR THOSE SHOES TO GO CAMPING? ARE YOU SERIOUS? WHAT IN THE HELL HAPPENED TO THE BRAVO NETWORK???


                SIDELINE REPORTER: Let's go back upstairs. Guys?


                ANNOUNCER 1: Wow, those two really love television.


                ANNOUNCER 2: It's pathetic. And awesome.


                ANNOUNCER 1: So that's all from here. Soon, the burning questions will all be answered--Is this cancer treatable? How much does it cost to park at the Dana Farber? Can Theresa walk on the beach in stilettos? Stay tuned for the postgame show!



                POSTGAME

                I guess this makes it official:



                Cindy and I have just emerged from the information tornado that is a meeting with an oncologist. It's hard to know where to begin. Here are the main things we learned:

                • At the moment, it appears that my cancer is all one mass that's at the point where my esophagus meets my stomach (a place I call "Dorito-ville").
                • One mass: good. More than one mass: bad
                • A PET scan tomorrow will hopefully confirm the one-mass theory. A PET scan will NOT explain why my cat is so fat, however. That's a whole other kind of PET scan, apparently.
                • If the scan confirms what we hope it confirms, I will immediately embark on an agressive course of radiation treatment.
                • When/if the radiation reduces the size of the tumor, the next step will be to surgically remove it and everything it's currently attached to.
                • What stage cancer do I have? Three or four. More specificity will have to wait for the moment.
                If I had to pick the one thing I learned today that trumps all others, however, it's this: The fact that I've chronically overeaten for 40 years is the only thing keeping me from being on a feeding tube right now. 

                In other words, Burger King saved my life and Weight Watchers can suck it.

                We talked a little about five-year survivability rates for this type of cancer. Let's leave it at this: the number he gave me would have terrified me a month ago, before all of this started. Today it seemed like a gift. It's all about perspective, I guess.

                That's the update for now. Thanks, as always, for the kind thoughts and support.






                Tuesday, July 24, 2012

                In Hell's waiting room

                CAT scan day has come and gone. Waiting for the follow-up phone call was the worst seven hours of our lives. Here's the bottom line:


                -The biopsy has confirmed that I have malignant cancer in both my stomach and my esophagus.


                -The CAT scan did NOT find any proof of the cancer having spread to either the liver or the lungs.


                -The CAT scan did show indications of inflamed lymph nodes, which could be a problem. 


                -The GI doctor feels that, if I'm able to have surgery, it will likely involve the removal of my spleen as well. But I've never even used my spleen, so I'm fine with that.


                I have now been handed off to an oncologist, who I see for the first time on Monday. He'll be the one to answer the nagging questions, such as "What stage cancer is it?" and "Is surgery still an option?" and "Where's the Oxycontin vending machine?"


                All-in-all I'd rate the CAT scan news as a solid B+. Had the scan found evidence that the cancer had spread to the liver or lungs, it probably would have ruled out surgery and I would have no chance of a full recovery. Further scans could show that the cancer has, in fact, spread to the liver and lungs but, for now, I haven't been voted off the island just yet.


                Thanks for all of the kind words, thoughts and prayers! Will keep you up-to-date as soon as I know more!

                Sunday, July 22, 2012

                And so it begins...

                This story starts two days ago, on the morning of Friday, July 20, 2012.


                I was still groggy from the anesthesia when the doctor showed me the photograph. "It's...it's not good," he said. I could hear my wife crying but I didn't take my eyes off of the picture. What was I looking at? "That's the tumor," he said, pointing to a glob on the left side of the image, "and that's the rest of your stomach," he said, pointing to the right. I had assumed it was a picture of Cleveland.


                You hear stories all the time about someone with a "golfball-sized" tumor on their brain or a "tumor the size of a grapefruit" on their liver. These are the quality, round masses of grim death that the cool people get. My tumor is the size and shape of a spilled puddle of pancake batter, and by the look on my doctor's face it will be the thing that kills me.


                Twelve hours earlier, I was sitting in the right field grandstand at Fenway Park with my wife and our two kids, struggling to push the butt end of an Italian sausage down my gullet. I followed that with half an order of fried dough and a trough of sickly sweet lemonade. The discomfort in my throat was familiar, something I had felt for months every time I ate or drank. Whatever I consumed--hot, cold, liquid, solid, spicy, sweet--got trapped halfway down my gaping maw, bringing with it a brief moment of panic, followed by a slow, stubborn downward crawl to my stomach. 


                As I sat there watching the Red Sox do their own slow, stubborn downward crawl (to last place), I was actually looking forward to the endoscopy I had scheduled for the following morning. I assumed it would lead to a simple solution--antacids, a pill or, in the worst case, an unpleasant liquid cure--that would allow me to resume my pursuit of even higher cholesterol without the hindrance of a narrowing esophagus.


                Actually, that's not exactly the whole truth. I did not assume that the endoscopy would lead to a simple cure. I knew, I absolutely knew, that there was something profoundly wrong with me. I didn't think "cancer" or anything that specific, but I knew something about my body was in crisis. Over the course of those same few months when the throat problems started, I noticed a marked reduction in stamina. At the start of May, I tried to get back on the bicycle to ride off a portion of the pounds I had put on over the winter. The first few rides of the year are always awful but, this time, I could never get over the hump. Even ten miles became an act of torture. After a couple of weeks, I stopped trying. 


                Soon I noticed that the walk from the train station to my office, a mere four blocks, was becoming a problem. What used to be one of the more pleasant parts of my day became an odyssey of flop sweat and nausea. And climbing the stairs once I got there was off the table. These days, when the elevator I never used to use releases me on to the second floor, I walk as fast as possible to the bathroom, hoping nobody sees me on the way, so that I can mop my brow with a wet paper towel until my heart rate levels off.


                So, in a bizarre way, this diagnosis has given me a morsel of comfort: I'm not out of shape and lazy. I'm out of shape and lazy WITH A TUMOR. 


                I should clarify something here. As I write this, I have not yet been officially diagnosed with cancer. A biopsy was taken and, within five days, it will be the final word on the matter. But the doctor, with a frankness that I genuinely appreciated, did us the courtesy of eliminating any painful false hopes and made it clear that we are dealing with a malignant tumor here.


                My wife and I both independently Googled "stomach cancer" in the hours that followed. For my wife, this was a terrible mistake that led to an enormous amount of sadness. For me, at this moment, I consider it the best thing I could have done. There is no way one researches stomach cancer and comes away with even an iota of false hope. And I am strangely at peace with how the odds are stacked against me which, if I ran a casino, might read as follows:

                It's not cancer. All we need to do it cut out most or all of my stomach: 100-1


                It's cancer, but we caught it early and it hasn't spread. If we cut out all or most of my stomach and start chemotherapy, I have a shot: 25-1


                I'm fucked: 5-2


                It turns out that it was a picture of Cleveland. My stomach is fine: 10,000-1

                Next step: In two days (one day after my 41st birthday), I take a CAT scan to see if whatever I have has spread.