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.

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!

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.