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.

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?

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!

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."

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.

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. 

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.