Catching up

Well hello there. It's been a while. 

So, let's catch up, shall we? It seems that I've survived surgery. Either that, or the afterlife is sort of anticlimactic. 

The hospital was just a blast: No food for nine days, six different tubes sticking out of my body, a dangerously understaffed nursing corps furious that they had to work extra shifts due to the blizzard, endless waves of bizzarre dreams and visions whenever I tried to sleep...it was easily the worst nine days of my life. During my second night there, I woke up in a panic. I had no idea where I was or why, so I pushed the call button for the nurse. The look on her face was not exactly compassionate. It was more like, "I was on my coffee break, asshole. I wasn't even supposed to be working this shift." This pretty much sums up my Brigham and Women's experience. 

I've been home for around four weeks now, and every day, with the help of Cindy, my dad, and the visiting nurses, I feel better. We met with the surgeon last week for the first time since the big event. He is thrilled with how things have gone and told us that the pathology reports on the stuff they pulled out of me indicate that the operation, along with the chemo and radiation, was a massive success. They found no living cancer cells.

The surgeon pulled out my staples, meaning the last remnant of this whole ordeal (other than a truly badass scar) is my J-tube, through which I currently get about half of my nutrition. But I'm close to ditching that as well. All I have to do is prove to the surgeon that I can drink five Ensures a day. With my new stomach, this is akin to proving you can squeeze ten pounds of crap into a five pound bag, but I'm trying my best.

Revisiting the Cancer Center has been surreal. Everyone we know sees us and looks at me as if they're seeing a ghost. "Wow, you look...good," they say. By the shocked look on their faces, you can tell that they hadn't expected to see me again, which is a little eerie. 

Up next, after a few more weeks of recovery from surgery, are more rounds of chemotherapy. This is just to clean up any possibility that there are any cancer cells that survived. Then I get my life back. In all, this ordeal will have taken about a full year of my life away. But at least I didn't have to shovel during the blizzard.

As always, thank you all for your kind thoughts, words and prayers. 

Headlong into surgery

I've basically had two doctors during this process: an oncologist and a surgeon. They could not possibly be more different, personality-wise.

For instance, here are their reactions to my recent CAT scan:

ONCOLOGIST - "Absolutely spectacular. It's as if you never had cancer. It's completely eradicated. I mean, it's still there, under the surface, but we really beat the hell out of it with the radiation. Spectacular results. Spectacular!"

SURGEON - "Yeah, it's fine, I guess."

I've never been in a room with both of them at the same time, but I would imagine that it would be hilarious.

So, anyway, good news on the scans. So now we're ready for surgery, which I understand will look something like the "Do you confess?" scene near the end of Braveheart. The surgery will take place on February 4, AKA the day after the Patriots win the Superbowl. Between now and then, I have approximately 45 appointments with various doctors, and a nasty cavity session with a dentist, but we're almost at the finish line.

Well, not quite the finish line, as it seems the oncologist wants to do more chemo after I recover from the surgery. Which is just super.

Thanks, as always, for the kind thoughts and prayers. As much as it's going to suck, getting to surgery is an absolute gift from the heavens--it's the opportunity to beat this that my mom never got. I can't help but think that all of the positive thoughts from everyone out there have helped to make this happen. I am forever in your debt.

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.

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.

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?

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.

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.