This past week I flew to Chicago to meet with some new clients in person. It had been 2 years, and it was amazing. Plus I got to meet my team in person for the first time. We had dinners out, drinks, conversations in taxi cabs.
Then later in the week, my boss from Brazil was finally able to come to the US. So me and the rest of my creative director team met him for a day of working and a happy hour.
It was all pretty exciting, but there was an unexpected part to all of it. It was a series of “get to know you” conversations, which meant I ended up telling the dumb Alex tumor story a bunch of times.
I’ve got the narrative down pretty well at this point and the tone is just right. I keep it quick. I can switch out certain parts if I want more sympathy or if I want to keep things light. But the tough part is when I have to stick the landing. That’s tricky. The conversation is over; we’ve exhausted the subject. But you have to conclude and move on. And really, the options are:
“He’s on a lower dose of chemo and seems to be managing it much better, so things are looking up.”
“He’s such a resilient kid, it’s amazing to watch. Kids are remarkable.”
“There’s definitely good news, though. His tumor shrunk 49% and hopefully in 6 months he’s done with the meds.”
But the reality is different. It doesn’t have a neat wrap up. Not yet, I guess.
“So right now I’m in a state of bitterness with a hint of despair. I’ve been finding myself wondering if God really exists and then considering that if he does exist, should I be mad at him?”
“It’s like a giant soap bubble is distorting our whole house, but we kinda go on about our day with a bit of an emotional limp.”
I’ve moved beyond the ‘it could be worse’ thing and now I’m just kinda low-simmer pissed off all the time.”
But those don’t make good conversation enders — especially for clients. They leave people unsettled and wondering if you’re up for doing your job (which I totally am). You’re a source of distraction and discomfort, not this interesting, smart creative director that is leading the team with a remarkable depth of emotion you’re sure he’ll bring to the work.
Alex is doing pretty well. Genuinely. He’s exercising and putting on weight. His grades are insane. He has great fun with his friends. He’s probably running for student council soon.
The whole baseline for life has shifted down quite a bit, but…well…no. I’ve got no wrap up.
I’ve worked as a writer in healthcare marketing for 25 years. I’ve written hundred of brochures, websites, and sales tools about dozens of different drugs. And when it comes to side effects, you really aren’t allowed to say much. The FDA is very particular about overpromising tolerability. So most of the time you just say that the drug is “generally well tolerated.” In fact, I’ve typed those words literally thousands of times.
But now I’m watching Alex live those words and it’s altogether different.
He’s now on a drug called Pazopanib (Votrient). Here is his tolerability report.
His hair has turned white, which is pretty bad ass.
There was immediate weight loss. He lost all desire (and joy) for food. He dropped about 10 pounds. So we saw a nutritionist and the doctor put him on medical marijuana (pill form). We stuffed our fridge with ice cream and Ensure shakes. And he started to gain some of it back.
Diarrhea. Not too bad, but pretty much the everyday norm. It’s “generally tolerable”, but it has kept him home from school a few days because he’s made it clear he’d rather die than use the high school bathroom.
Then, around 10 weeks in, the pain started. Hip pain so he walks like a marionette and has to use his arms to get himself in and out of the car. Wrist pain that affects his ability to write and take tests. Even occasional jaw pain to the point that he had to have smoothies for dinner because it hurt too much to chew. Hiking is day to day. Backpacking and diving are out of the question.
Because of all of this, they have reduced his dose. The pain is still there, but much reduced. His shit is suddenly solid again which came with 3 days of brutal stomach pain.
Part of what’s so hard is that it keeps changing. It’s inconsistent. You can’t get into a routine where you know what you’re dealing with and how to handle it. He’ll get three days in a row when he’s pain-free and he thinks he’s figured out the right routine of stretching and then BLAM he’s floored for 2 days straight. If I’m being honest, it’s wearing all of us down.
But there have been some good things too.
In January, the MRI showed that the tumor in his leg had shrunk 49%. That was a night for champagne and sparkling cider.
We finally got the results from his genetic testing (which had been hanging over our heads for months). Desmoid Tumors sometimes come with a genetic mutation called FAP. If you have FAP, you are 100% certain to get colon cancer before you turn 30.
So in January they called us and said: “We have the results. We’d like all of you to come in as soon as possible. You’ll meet with your oncologist and then a team of genetic counselors.”
That was a grim drive to CHOP.
But when we got there, they told us Alex did NOT have the FAP mutation. He had a different one that made him slightly more likely to have colon cancer and he should start testing at 40 (instead of 50). No big deal at all. They had called us in because they didn’t want us to read the results ourselves and misinterpret them.
Then the doctors left the room and I went over to Alex, buried my head in his lap, and absolutely sobbed for a solid minute.
And we broke out champagne and sparkling cider again.
It’s been a haul. I thought life would get easier with only one kid in the house, but things have taken a pretty crazy shift.
It’s Sunday as I write this, and Shani and I are home alone. Jack wrote us Thursday and told us he was coming home from Fordham for the long weekend. He announced that he and Alex would be taking the car on Sunday. So now my boys are off somewhere blasting through Pennsylvania, listening to music, talking about God knows what, getting ice cream on my credit card.
That actually might be about the most joyful thing I can imagine.
On top of that, Shani’s parents are coming over for dinner tonight. Covid has derailed things, but tonight the six of us are finally going to have a meal together. I have a fire going in the fireplace. The dog is asleep against my leg. I’m in love with and deeply appreciative of my wife, who is reading a book by the fire.
Part 1: The Grand Tetons (this story has 35 photos)
This past August, like most years, we hit the road for an epic family trip. We hiked Arches National Park in Utah, drove the Million Dollar Highway in Colorado, stayed in a bizarro AirBnb in Iowa, saw friends and family – just amazing. A major part of the trip was for Alex and me to spend 3 days packing the famed Teton Crest Trail in Grand Tetons National Park. Alex and I have a list of backpacking trips we plan to do over our lifetime, and this was at the absolute top.
It did not disappoint. But I want to talk about what he and I talked about.
So, there are camping trips and then there are backpacking trips. On camping trips, you pack in a few miles, but the real event is about the camping. You sit around the fire. You have coffee in the morning. They’re relaxed. And when Alex and I do camping trips, we get lots of time to chatter away about all kinds of things – friends, Marvel movies, life, school, you name it.
But a backpacking trip is more about the journey itself. And we usually spend most of our time talking about logistics: where to get water, bear canister management, organizing the campsite. This trip was particularly heavy on the logistics– lots of details to discuss and manage. So that was a lot of what we talked about.
Then the rest of the conversation space got filled up by the landscape itself. I mean, every 10 minutes we’d come to a field or an overlook or a bluff and just be staggered by how gorgeous it was. Which meant we spent tons of time just talking about how unique and stunning the place was and pointing out things to each other.
Tetons Day 1
Tetons Day 2
Tetons Day 3
However, there was also what wasn’t spoken.
As you probably know, Alex has a tumor in his leg (here’s the full story if you want it). At first we thought it was cancer, but it turned out to be a non-cancerous tumor called a Desmoid tumor. They figured that out in April and told us to do nothing unless it was growing. No action needed until we do another scan in October.
But in June Alex pointed out that it was quite obviously growing.
So back to the doctors, another scan. Yes, not only had it grown but there was a second tumor in his butt. Action was warranted. Alex underwent a procedure called cryoablation, where they put needles into the his leg and hit the tumor with super cold to freeze out whole chunks of it. In fact, here he is coming out of the anesthesia.
They got 50% of the butt tumor and 30% of the leg tumor. They felt great about the results. Next step was drugs (chemo) to knock it down further – but we could wait until after our trip for that.
And that is what wasn’t said on the packing trip through the Tetons. Alex felt it though. It was weighing on him. I had no idea at the time, but in his head he was contemplating the possibility that this was his last packing trip. I think it gave those views an extra layer of emotion – the boy was considering that he might never get to do something like this again. In some ways maybe he was saying goodbye to backpacking.
In fact, he told me later it was why he went swimming in Sunset Lake. It might have been his last chance to swim in a mountain lake like this, so he crept into that ice-cold water with that in mind.
Part 2: Chemo (this story has 1 photo)
We got home and the next week Alex started a drug called Nexavar. We were warned that most common side effect was a rash on the feet and hands. In fact, they recommended Alex lather up with Eucerin before bed each night (which he did and hated).
For the first few days everything seemed fine. But that Saturday, Shani and I were going to the store when she got a frantic phone call from Alex. His legs were itching wildly. We flipped a U-turn and rushed home. But by the time we got there, he was good. Jack had suggested a cold shower and that had done the trick.
The next day, nothing. Seemed fine. But just to be safe, I stayed home with Alex as Shani dropped Jack off at Fordham alone (which broke my heart a little).
But still no issues – all good.
Labor Day Weekend arrived, and we were going to drive to New York to spend the weekend at my Dad’s house – the first time since COVID. We headed out on Friday afternoon, and as we got in the car, Alex pointed out a small red hive on each of his elbows. No big deal. No itch. We called the doctor – they said keep an eye on it, monitor for fever, and it should be fine. So we kept going. Traffic was heavy so it took us an hour to get through Philly, which is when we noticed that both hives had grown. They’d started as quarter-sized, but now both of them had branched out.
Shani – blessed, brilliant, wonderful Shani – insisted we turn around. Just to be safe. I called my dad to share the bad news, spun the car around, and did the hour of traffic all over again.
We called the doctor again and were told to monitor for fever. 100.7 meant go to the ER. Which happened at about 11:00 that night. We were in the ER until 4:30 AM. No infection, labs were good, and the fever came down. We were in the clear.
But not really.
The rest of Labor Day Weekend was a slow creep. The hives spread. They showed up on his hands and feet. They crept up his wrists. The fever came and went, but stayed low. He felt crummy every evening and went to bed early. The bottoms of his feet started to hurt to the point where just walking down the stairs was painful. He and I played a ton of Lego Marvel Avengers on the Xbox and we kept in touch with the doctor. The instructions were always the same – fever of 100.7 meant ER.
Monday morning he woke up and the rash had spread. Chest, back, legs. And that evening he got a fever that crossed the threshold. We drove him to CHOP in Philly. They admitted him.
OK – ready for the photo?
That’s his back. Shit got real. Fast. That night the rash covered him entirely.
And then the itching came.
OK – deep breath. Here we go.
You’ve experienced itching, right? Poison Ivy, bug bite, athlete’s foot? Then you know how awful it is.
The worst itching you’ve ever experienced wouldn’t even touch this.
It would flare up and take hold of his entire body. His hands, feet, legs, chest. It looked like he was being electrocuted; he would flail around the hospital bed. He would grit his teeth and scream. He would get up and stomp and swirl around the room slapping at his skin.
Nothing they gave him provided any relief. Prescription-strength Benadryl, hydrocortisone – it did nothing. IVs, creams, lotions, ice packs.
I remember as one flare-up came on, he started crying out: “Dad! Dad! Dad! Dad!” A child begging for his daddy to help him. In fact, I can still kind of hear that in my head. And I stood by helpless to do anything.
In the thick of another bad flare up he stood up and screamed: “It’s not getting any better!” and then he collapsed onto his bed sobbing. I staggered over and buried my face into his back, bawling myself. And I’d like to say it was in support or solidarity, but it wasn’t. It was selfish; watching him was too much to take and I fell apart.
It went on like that for three days. He probably slept a total of 6 hours during that span.
Some things did help, though.
First off, they had an IV opioid that gave him short periods of relief – but they were pretty sparing with that.
We found that bad TV could be a distraction. He and I threw ourselves into Bachelor in Paradise and got so into it we were yelling at the screen and telling the nurses all about the plot twists. The following night, Shani and Alex watched 7 consecutive episodes of Law and Order SVU.
But the biggest difference-maker was Alex himself.
When he was two years old, he couldn’t pronounce the word “cookie.” He would say “coo-tee.” Shani tells the story of listening to Alex in the back of the car trying over and over to say the word right. “Coo-tee! Coo-ka-tee! Coo-TEE! Cook! Cook! Cook-EE!”
I have memories of watching Alex literally will himself to learn how to read. His little eyes were burning into the book as he mouthed syllables. Forcing himself to figure it out.
Alex is driven and deliberate and smart as hell. I watched him deliberately set out to master the itching. He would feel it coming on and force himself to stay in control. It was amazing to watch. He still lost it sometimes, but sometimes he would fight through it.
The itching finally started to recede after three days. Alex slept for 12 hours straight. Then they sent him home the next day.
So…here we are a few weeks later. He’s back at school. In fact, he just blew up the grade curve on his calc test and got 100. The itching and rash are long past. He and I hiked Hawk Mountain last weekend (5.1 miles, 1096 feet). He started a different medicine about a week ago. A few side effects, but nothing bad – although we’re kind of on pins and needles. All three of us are still a bit shaken.
I’ll close by mentioning one last thing that’s helped Alex: he has wonderful friends who love him. Our last evening in the hospital was his 16th birthday. We snuck in two of his best friends, who came in with Swedish fish and potato chips and gummi worms and a cake. Shani and I stepped out to let them hang out, but I already could see Alex sitting up taller and with more color in his skin. I heard them all laughing as we closed the door.
Here’s our list of packing trips.
Oh, and here’s a few photos from the rest of our big trip.
I was up at 6:00, got Jack up at 6:45, and we were on the road by 7:10 with Jack’s “Everything Mega” mix blasting out The Grateful Dead, Rolling Stones, and in what felt like minutes we’d bounded across Pennsylvania and were pulling into the lot in Pittsburgh, and then a block later we were among joyous people decked out in all manners of Pirates gear (and some Mets too), then we were through the gates and into the masterpiece of ballparks with views of yellow bridgespans and the cityscape and hillsides crowded with houses and trees where we slurped down greasy pierogis, gave the usher a $5 tip, and were soon joined by our old friends Avi and Solomon Cover to sit right at field level third base and chatter away as we watched a terrific game all the way to the last pitch then shuffling out to cars to city streets to Interstate 80 to Cover’s backyard for burgers and laughing and Avi and I split three pints and a sneak run to Jeni’s Ice Cream and somehow still in bed by 10:00, and then up again, quick shower, quick food run, and off for Chicago just flashing across the miles to our hotel nestled deep in the heart of Chinatown where we quickly threw our stuff in the room and then off and apace, striding through Chicago, so thrilled to be there, pointing out every detail of the city to each other until finally across the wide lot, wait at the gate, and then into a genuinely under-appreciated and unfairly-maligned Guaranteed Rate Field with its black steel framing and its unpretentious crowds, where we had great seats already, but for batting practice we sat in the right field section with counters and real chairs and our own waitress named Terry who let us open a tab and we never left, and I could smell grilled Chicago sausages and these four guys were chattering away behind us and my newly 18-year-old son was next to me and I was drinking a beer and I texted Shani: “I am in Nirvana”, and she texted me back to let me know that Alex said you can’t be in Nirvana, you have to achieveNirvana, so I texted back: “At the top of the 2nd inning on my son’s 18th birthday at Guaranteed Rate Field, I achieved Nirvana” and it was true, in fact, I continued to achieve Nirvana up until the final out and all the way through our walk back to the hotel and even that evening as we wandered Chinatown, went through a dingy doorway, up a shining escalator to discover a dim-sum palace for a tremendous dinner of shrimp dumplings and pork buns and mango pudding and still back and in bed by 10:00 to be up for a few work meetings and then out the door to the parking garage where Jack took it straight north in six lanes of roaring traffic and Everything Mega put on Hot for Teacher and we both air-guitared like meth addicts and soon we were at our hotel in Milwaukee, which was only 2 miles from the park, we could literally see it from our hotel window, but it was 2 miles of industrial boredom so we went to find a cab and instead the baseball gods put two electric scooters right there at the taxi stand and we were OFF, buzzing across lots and sidewalks, all the way to the gates of the marvel of engineering that is American Family Field, here, look at this photo…
…which doesn’t do it justice, but we sat and were tired and hot and kinda hitting a wall until the baseball gods sent a breeze that brought a cold front that brought a 15 degree drop in temperature, and I brought back two bratwurst, a Pepsi for Jack, and a Leinenkugel for me (not my usual style, but Good Lord delicious), which brought us back into the state of pure gratitude that only comes from riding the arc of a full 9-inning journey that ended with us energized and appreciative, so we found two more scooters and rattled through Milwaukee to the “Deer District” packed with Bucks fans ready for Game 6, then finally a Lyft back to the hotel where we watched the NBA finals while Jack did 270 push-ups and when the Bucks won we could see fireworks from our 19th floor window and still, with all that, we got to bed by 11:00 to be up and on the road by 7:00, staring 13 hours and 49 minutes of driving right in the mouth, so I took the first shift and got us on the other side of Chicago, then Jack took us across Indiana and Ohio, ripping at a healthy 81 MPH while I took conference calls and literally presented creative concepts to a client from the passenger seat, but then Jack started to feel the drag so I took over only stopping to gas and piss and grab food quick and in no time were on the Schuylkill through Philly, across the Walt, and pulling into the driveway.
At one point, as we were walking back from Guaranteed Rate Field, Jack emphatically pronounced: “We are good at this.”
And he’s right. Both for road trips and ballparks we execute perfectly. We road trip so efficiently that 13 hours seems easy, almost matter of fact – and we took in every second. As for ballparks, we know how to get there, how to navigate, how to flow with the crowds and the game itself, how to drift out and exit without the slightest bit of strain. It’s all leisure, all float, all immersion in magic water. It seems almost impossible that in a single day we can drive 5 hours, spend 5+ hours in a ballpark, and still have time to leisurely explore the city and find a dim-sum dinner adventure. But we’re that fluid, that proficient – as Jack said, we’re that good.
The conversation stayed easy. There was no weight between us, only lockstep. When we drove to Spring Training a few years ago, Jack pumped me for information about the year I lived in my car and the year Shani and I travelled the globe. He literally made me go through every day and every location.
But now he knows everything, I suppose. I still have a few stories to tell, but the big ones are covered.
There wasn’t a deep talk. There wasn’t an opening of hearts and exchange of life outlook to bring us closer. But then again, maybe we can’t get any closer. Maybe our hearts are as open as hearts can get. I think mine is. Maybe there’s not much more that needs to be said.
He’s spent the past 18 years as part of an ensemble cast, and now he’s ready to have his own spinoff. He’s ready to be the title character. He’s ready to be the protagonist with a whole new supporting cast around him.
I’m ready too.
The whole dynamic of the house will change. Shani and I will have less to consider and track and think about. More freedom; less responsibility. It’s the start of a new time of our lives as a couple.
Yes, I’m ready. But I still get sad thinking about it.
And then I think about baseball.
Because for a decade it’s been our space together. Each year he and I have gone to 4-6 ballgames. We’ve watched batting practice, commented on plays, ate ballpark food. We’ve marveled, evaluated, critiqued, and above all, appreciated. It’s been an alternate world that we would step into – a world we knew exactly how to navigate, how to explore. A world where we noticed and relished every detail. My great God, what a blessing every minute has been. Every minute.
Yes, Jack is leaving.
Yes, my son is going off and he will not be back. Things will never again be the way they are now.
In 2017, the Astros and the Yankees faced off in the American League Championship. It was a best-of-seven series and the winner would go on to the World Series. And after an epic battle that went back and forth, the Astros won. They then went on to defeat the Dodgers to win the world championship.
But they cheated. They had a series of cameras monitoring the opposing catcher’s signs so they could determine what pitch was about to be thrown. They had a guy stationed right inside the dugout who would bang a trash can to signal to the batter what pitch to expect.
This is not conjecture. It was proven conclusively through the MLB investigation. The manager was banned from baseball for a year; the team was fined 5 million dollars.
Which meant that suddenly the series Jack and I had watched with such joy and devastation. That series the Astros just barely eeked out. Oh yeah, that series felt very different to us and to every Yankees fan.
And now finally…after two years of waiting…finally…those miserable cheating Astros would be returning to Yankees Stadium and facing a home crowd. Finally those scumbags were going to hear from us.
We weren’t going to miss it.
Tickets were tough to get. The stadium was only at 15% capacity, so we ended up shelling out almost $100 for nosebleed seats. But as so often happens to us, the baseball gods smiled down.
On the morning of the game, I received an alert saying my tickets had been refunded and I would have credit for my next purchase. REFUNDED?!? I panicked and went online to find new seats, expecting the worst. But the weather called for rain, which meant that tons of seats were available for cheap. My refund money landed us seats that were normally $123 each — just 14 rows away from third base.
Oh yes, the Astros were most certainly going to hear from us.
We left the house at noon, way earlier than we needed. We planned to follow our normal routine: park in Washington Heights (the neighborhood where we lived until Jack was 2) and then take the subway to the game.
As we drove across the George Washington Bridge, we looked over the city.
“You’ll live here soon,” I said. (Jack is going to Fordham University in the fall.)
“I was telling my friends that I’ll learn how to navigate things here. I can’t wait to be able to do that.”
“Your brother is now saying that he wants to live here someday.”
“It’s all I’ve wanted my whole life,” he said a little dreamily.
I prowled the car around the familiar neighborhood, took a turn down a side street, and found the perfect spot. There was even an abandoned lot right there where we could take a much need pee.
We were hours early and it was raining, so we bought some pizza and ate it back in the car. Then after a while we made our way to the subway.
At the stadium we waited outside a McDonalds until the gates finally opened. Giddy with excitement, we bounced into the concourse hoping for batting practice and a chance to start jeering the Astros, but they wisely stayed huddled in their locker room out of the rain.
We wandered the stadium, toured Monument Park, and did out normal and sacred routine until game time approached and we went to our seats. It was go time. And the fans did not disappoint.
Jack actually put it this way: “Back home, people know about the cheating, but they don’t really care that much. It felt really good to be in a stadium full of people were were all as angry about it as I am.”
The chants were merciless. The boos were non-stop. Those players will spend every away game for the rest of their careers being called out as cheaters. And in my mind, they deserve it.
And I don’t know whether to call it a rite of manly passage, father-son bonding, or terrible parenting — but to stand next to my son as we both chanted “FUCK-THE-AS-TROS!” was something I really enjoyed.
I took a more refined approach to heckling as well. The Astro’s star third baseman and cheater, Alex Bregman, was less than 100 feet away. During quiet moments in the game I would call to him. My goal was to hit home. I showered him with a barrage of taunts meant to hurt him.
“Hey Bregman! Hey Bregman — what does your little league coach think of you now?”
“Hey Bregman! Hey Bregman — did you give a World Series ring to the guy who banged the trash can?”
“Hey Bregman! Hey Bregman — how does it feel to know you used to be a role model for kids?”
“Hey Bregman! Hey Bregman — have you ever called your manager to apologize?”
“Hey Bregman! Hey Bregman — how does it feel to know you cared more about a world championship than you did about your own integrity?”
He heard me. I could tell. And the crowd loved it. They started looking over at me every inning. They’d get quiet, and then they’d “oooh” after each barb.
Alex Bregman is an excellent third basemen. But in the bottom of the 6th inning, he fielded a routine ground ball, set, and misfired a throw to first base. I am personally taking credit for that error.
It was a great game. The first half was tense and locked at 3-3. We huddled in the pouring rain and hung on every pitch.
But as the weather cleared, the Yankees broke it open. Guys who were slumping got big hits and the crowd went wild. Then when the Yankees closer, Aroldis Chapman, threw the final pitch, he had an extra level of intensity to his trademark stare, knowing that when the Astros didn’t know what pitch was coming, they couldn’t touch him.
It was a long game and it was nearly midnight before we made it back to Washington Heights. I stopped at a Bodega to get a cup of coffee. Jack tossed a package of gummy bears onto the counter next to my cup.
“You know you want these,” he said, and then exchanged a smile with the guy behind the counter.
There’s a banter in New York City. It’s not small talk exactly and it’s certainly not conversation. It’s somehow a product of having to live your life with other people in your personal space, and you become fluent in it when you live there.
We left and walked along the subdued sidewalks. Two guys was across the street called to us.
“Did we win?” they asked, seeing our Yankees shirts.
“Hell yes,” shot back.
“Fuck the Astros,” Jack added as a friendly goodbye.
This boy is leaving me soon. I can feel it. I can feel him sliding away.
For 18 years this boy has occupied my life. He was occupied my kitchen and my couch. He has occupied my daily schedule. He has occupied the sounds of our home.
He has occupied my heart.
And he’s leaving. Soon.
I feel like I’m holding a wet bar of soap that is sliding, sliding, and any second it will squirt out of my hands.
He is a kite that I carefully lifted into the air until the wind started to take hold. I’ve let it rise higher and higher, laughing as it dipped and soared, letting out more and more string.
But the string is almost at its end. And soon he will fly away and out of my grasp. Soon I will be without the reassuring tug of the line against my hand.
We rounded the corner, peed in the empty lot, and then reached the car. As I opened the door, I looked up; we hadn’t seen it in the rain when we had parked. But now the entire length of the George Washington Bridge was spread out right before us, shining in the glossy night.
It was a Saturday afternoon. I was in the living room teaching myself Hallelujah by Leonard Cohen on the guitar. Alex came down.
“Dad. I have this lump.” Then he turned and showed me the back of his right thigh.
A fist-sized blob of flesh was pushing out against his skin. I felt it; it was squishy and moved up and down if I pressed it.
“How long have you had that?”
“A while. At least a month.”
He told me later that when he saw my reaction he got worried. He expected Shani to be nervous, but he expected me to blow it off.
I called Shani down, did some googling, forbade Shani from googling, and then took him to PM Pediatrics. Not so much because I thought it was urgent, but because we were going to worry about it until we saw a doctor.
That doctor wasn’t much help. She said we needed to see our regular pediatrician and get a referral for an ultrasound. And she seemed alarmed. Doctors usually have good poker faces, but I felt her emotions rise when she laid eyes on that lump.
Things went pretty quick from there. Pediatrician Monday. Referred for ultrasound Tuesday. Referred for MRI Wednesday morning. And each step brought another level of fear into the whole thing. Our pediatrician told us she would call as soon as she got the radiologist report from the MRI. She told us to expect it Thursday.
But that Wednesday afternoon, I was on the back porch leading a conference call. Shani popped her head out.
“Come on,” she said, phone to her ear and waving me inside.
“I have to go,” I announced abruptly and closed the laptop.
It was the pediatrician. We sat at the kitchen table; Shani put it on speaker.
I knew from her tone.
I honestly don’t remember what she said, although my heart is racing now just writing about it. I wrote some words down on a piece of paper. Here, check it out.
But whatever words she spoke, what they meant was clear. Alex had cancer.
We hung up the phone just as Alex walked into the kitchen. We told him. I went upstairs and told Jack. And soon we were all upstairs in our beds. Jack was under the covers, stunned. Alex was in his room texting friends. Shani and I sat on our bed and stared at each other. We rotated some. I’d go sit with Jack. Shani would lay with Alex for a while. The only levity was that occasionally the puppy would bound in and demand attention, joyfully oblivious to the situation.
I went downstairs and called my brother. The call went like this…
[Insert 60 seconds of gasping and trying to speak before he finally gets the words out.]
Alex has cancer.
[Insert two full minutes of uncontrolled sobbing.]
Chris said all the right things; he was wonderful as my brother always is. He asked me a bunch of questions, none of which I knew answers to. When we hung up, I decided I wasn’t up for making any more phone calls. He promptly overnighted Alex a care package of bacon and candy.
That evening, Shani’s friend, who is a pediatrician, came over and read through the radiologist report for us and answered our questions.
And I’m fairly sure that night was the worst night of my life.
The next day Alex and Shani went to CHOP (Children’s Hospital of Philadelphia). Our pediatrician had gotten us in to see Dr. Kristy Webber, one of the world’s leading experts on sarcomas. They conferenced me in as well as our friend, Heather. We recorded the conversation and Heather took notes.
Dr. Webber was pretty amazing. She was competent and direct. She spoke in plain language. She listened. She addressed Alex directly.
She told us that the MRI was not conclusive. It could be cancer; it could be something else. She wanted a biopsy and then we would move forward quickly. In the meantime, Alex should exercise and go about his normal life.
So we kinda did that. I told my family after that (through email). We told our jobs. Then a few days later, Shani took Alex in for a biopsy. They laid him on his belly, numbed the area, and then pulled out chunks of the tumor using a giant syringe.
Then more waiting. (I think cancer is mostly about waiting.) Shani and I barely left the house. If we did, we made detailed plans for conferencing each other in if Dr. Webber called with results. We went about our days in a tense fog.
The call was quick. Shani was in the car when it came and it was too fast to conference me in. She called me right after; I was in the car with Alex.
“Dr. Webber said that she wants to run one more test, but from what she sees so far, she is ‘cautiously optimistic‘.”
I felt muscles in my neck and back letting go. I had no idea they were even clenched, but suddenly I was deflating deliciously like a punctured parade float.
“Alex, if you don’t have cancer….Fuuuuuuuucccccck.”
Dr. Webber said she’d get back to us the following Monday or even Tuesday. And I can promise you that during that time, no words have ever been analyzed more exhaustively than we analyzed the phrase ‘cautiously optimistic.’
It was actually Thursday when she finally called.
It was not cancer.
Alex has what is called a “Desmoid Tumor.” It is not cancer; it does not spread. And unless it is painful or growing, they don’t do anything. They just leave it. Alex had to have another scan in 3-6 months, but otherwise that was it.
So, funny thing. Alex and I have a list of hikes and backpacking trips in National Parks all over the country. Our plan is to work our way through the list over the years. (You better stay in shape, Dad!) And on our list is to go canoe-camping in Congaree National Park in South Carolina.
We’d planned to go last spring, but we had to cancel due to the pandemic. We’d rescheduled for this April and even put a deposit down on a canoe rental. But the lump screwed all that up. We figured there was no way we could still go. Even if it wasn’t cancer, Alex would still have to have surgery to remove the lump. We’d written off Congaree once again.
But about 5 minutes after we got off the phone hearing the news about the Desmoid Tumor, it hit me. I rushed up the stairs and into Alex’s room.
“Alex! We can still do Congaree!”
And a happy dance followed.
So last Friday we mounted up and drove south. The drive was nine hours. We alternated album choices (Purple Rain, Adele 21, Faith, lots more) and we chattered away about if Jack would get a girlfriend in college, theories about Falcon and Winter Soldier, what it was like living in New York City. We gorged ourselves on luscious blackberries that we had brought. And every time we stopped for gas or to pee on the side of the road, the bright smell of spring got more and more intense.
Our hotel was by a huge mall, so early the next morning I let Alex try driving the car around the massive empty parking lots. At 10:00 we went to get our canoe only to find that the park was flooded (!) which meant canoeing wasn’t possible.
Alex didn’t miss a beat.
“Smoky Mountains National Park is 4 hours away!”
So we shot west as Alex found us a hotel in Tennessee. By 2:30 we were on the trail and did an epic, stunning 13-mile hike that took us well past sundown. He and I are so good at hiking together; it was just terrific.
Sunday morning we gassed up and pointed back north. Alex put on the soundtrack to Hamilton. We cranked it up loud, and we sang out loud to every song as we flew across gorgeous country filled with hills and farms. We even started to cast our family version of Hamilton (I’m George Washington, Alex is Hamilton).
But it was during the song “Dear Theodosia” that I started to feel them. Tendrils of emotion began burrowing across my chest. The song is a duet between Aaron Burr and Hamilton. They’ve both just become fathers and they’re singing their hopes for their newborn children. The lyrics caught me again and again. (“I’ll keep the world safe and sound for you.”) And the reality of the past month started to really sink in. I held it together until “It’s Quiet Uptown.” Hamilton’s son is killed in a duel, and the song is two parents grieving for a dead child. I became acutely conscious of Alex’s physical presence just two feet to my right. The reality of my son. He was right there; I could touch him.
On the night after we got the initial diagnosis, three times Shani woke me up wracked with uncontrollable sobbing. We wrapped around each other in the dark and she murmured “he’s my baby” over and over.
On the evening we got the initial diagnosis, Jack Nuckols got in the car and drove. He put it on the New Jersey Turnpike and blasted 100 miles north. I can picture him blaring music and screaming along with it, drowning with emotion. Contemplating the threat to our nuclear family that is the core of his whole world.
On the day after we learned it wasn’t cancer, my Uncle Bob called me and through gravelly sobs told me it had been “the longest two weeks of his life.”
Because in the darkest moments of this ordeal, when we let it slip in, what we were facing was the possibility of living in a world that didn’t have Alex in it. We were facing the possibility that this boy would grow sicker and thinner and weaker. That he would face debilitating pain and nausea and eventually…let go. This glowing star of a boy, who shines so dazzlingly bright, would begin to dim, and then flicker, and then go out. My son.
But there he was, real, right next to me, signing every word of “Your Obedient Servant.”
I looked out the window to the left and tears just sort of dribbled out.
So, here’s what I’ll say. Two things.
1) No sympathy, please. Accepting sympathy would feel almost dishonest to me. Narcissistic. Ungrateful. Everyone reading this knows someone who didn’t find out it wasn’t cancer 20 days into the process. Send your support there. I actually believe my brother’s response was the appropriate one.
2) Friends. For each of us — Alex, Jack, Shani, and myself — for each of us in different ways, it was friends who carried us. I felt that support every single second of the ordeal. And I come away reminded of what I already knew: That when it comes to love, I am the richest man in the world. Deep and heartfelt thanks to everyone who lent their love and friendship.
Oh. And we’re doing Congaree in November, dammit! Also…I made a little tribute/gratitude video. See below.
I wrote Jack a letter for Christmas (I do that every year). And I shared the following advice for when he heads to college:
1) Don’t put off your work.
2) Don’t get fat.
3) Don’t get into debt
4) Don’t smoke
I’ve got a deal with both boys (credit to Devin Moberg) where on the day they graduate college, if they haven’t ever smoked a cigarette, I will hand them a check for $1000.
OK…but because it was a big list of “don’t” — I ended with:
But more important is what you SHOULD do. And the answer is…everything. Go explore. Go try things. Go make mistakes. Say yes to the world. Say yes to weird offers. Say yes to pretty girls. In fact, those things I don’t want you to do are really there because they’ll limit your ability to do the million other things that are out there. Go have adventures. LOTS of them. Life is short – go live the crap out of it!
So that’s what I had. Gimme your college advice for the boy.
He told Jack first. We were all on a hike, they were up ahead of Shani and me, and he told Jack he was gay. Jack didn’t seem to think it was a big deal.
Then he told Shani. She was in the living room. He came up, sat on the ottoman, told her, and then went back down to the basement. It was a quick drop and gone.
I was last. And that was strange to me because he and I were really close. Almost every weekend the two of us would spend the day going on hikes. We talked for hours in the car and on the trail. And I felt like things were super open between us. In fact, we’d actually had a conversation about his sexuality a few months earlier. The two of us drove up to Vestal to see the premiere of Guardians of the Galaxy Volume 2 with my buddies from high school, and on the drive home, I asked him.
“So, if you don’t want to answer this it’s totally fine. And I don’t care about the answer either. But…have you ever considered if you were gay?”
“No,” he said definitively. “Because I have a crush on a girl.”
And we talked all about it from there. We laughed about the fact that he had so many stereotypically gay characteristics (loved Taylor Swift, favorite color was pink, into musicals, all his friends were girls), but he wasn’t gay. He even told me that his friends had joked that if they were all characters in a sitcom, he’d be the gay friend.
But he wasn’t gay. I even felt a little relief over it, although I didn’t recognize it at the time.
But here we were a few months later, on a hike in Northern New Jersey, and he says…
“I have to tell you something. It’s not a big deal. Well, it kind of is, but not really…”
I knew right away what it was, and my heart gripped.
He said it. I stopped. I hugged him. Then I said all the right things. I told him I accepted him completely, and he said he already knew that. I told him he could always decide to change, and that was fine with me.
Then we spent the rest of the hike talking about it. I asked him how he’d figured it out, who else knew, and more. Apparently, it was my asking him on the car ride a few months that really got him thinking. And as he thought about it, it became clear pretty quickly. Most of his friends knew. Jack knew; Shani knew.
He told me that he’d told the kids on his dive team. Sam, who was 17 and gay, had first danced with joy, and then gave Alex some good advice.
“It took me a year to tell my parents, and I spent that whole year really depressed. So I’d recommend you tell your parents right away.”
So Alex did. And we had a terrific conversation about it.
I was trying to learn a bit more about how he realized he was gay. So I asked…
“So, when I watch Avengers movies, I see Scarlett Johanssen and I think…yeah, she looks good. Does that happen to you with Captain America?”
And he said…
“Yes. But Thor, not Cap.”
(There are a number of quotes that stand out from Alex’s coming out, and this is the first.)
In other words, it couldn’t have gone better, right? Acceptance. Open dialogue. Still buddies.
Except it wasn’t quite right. Because it wasn’t sitting well with me. I had this nagging dread at the very top of my stomach. I was sad. Which didn’t make sense. I mean, I could not be more pro-gay. I’m all for this. Total support, right?
But then what was this sense of dread? I was ashamed to feel it.
I talked about it at length with Shani, and at some point, I wondered why he told me last. Was he nervous about my reaction?
And here comes quote number two…
“He wants to be you. And by being gay it means he can’t be.”
The second she said that, I started to cry. Kinda hard. It sunk like a stone passing through my chest and into my stomach. That quote still stops me in my tracks when I think about it.
I grappled with how I was feeling for a good week, at least. Guilt, sadness, distraction. Then I called the Chief. He was in the car with his two daughters. I got two words out of my mouth…and I was absolutely bawling. I can only imagine how freaked out his girls must have been hearing this wailing man over the car speakers.
But my man had the medicine. He let me blubber it out, then said…
“You’ve been looking forward to things you wanted to share with him before he was even born. You’ve pictured those moments in your head. But now you’re not gonna get those moments the way you imagined. And you’re mourning the fact that you’re losing that. Which is OK. You’re gonna get different moments and experience different things together. But it’s OK to mourn what you’ve lost.”
That was the answer. And that made it so I could breathe again. It meant I didn’t have to grapple with that dread anymore or feel ashamed that it was there. In fact, it wasn’t dread at all. It was mourning and that was something I could embrace and give myself over to. I was basically all good from thereafter.
There was a terrific talk with Jack shortly thereafter. He and I went for a long walk and discussed the subject at length. He actually felt like he hadn’t handled it well when Alex told him, and I was able to assure him that he’d handled it just fine. He also told me…
“If a kid picks on Alex for being gay, I think it means I have to fight that kid.”
I told him that was right.
Then there was telling our larger network. Alex wrote his grandparents a letter and they called him right away to tell him they loved him no matter what. I told my friends. I told my dad. And every one of those conversations had a similar pattern. I’d tell them, and then they’d say “I knew it!” like it was some kind of prophetic insight they’d had. But everyone was totally great about it.
So now it’s two years later and I finally feel like I can share the story. It’s no longer about Alex coming out. He’s done coming out. Alex is gay. It’s 100% public.
I can also say that he’s had basically zero problems, for which I’m deeply grateful. The kids in school know and embrace it. He doesn’t seem to have been picked on at all – although I suspect some of the alpha-boys in school may have thrown a little shade his way. Alex loves to point out that their entire identity is success in sports, and that it would never occur to any of them that the gay kid was actually the most successful athlete in the entire school. “They think it’s a big deal if they make the varsity soccer team and I literally won Nationals last summer.”
I’m also happy to report that we’re as close as ever. We’ve had a cribbage battle going on this year and we’re tied at 72 games a-piece. We did a trip to Shenendoah National Park this August, where we camped in a local farmer’s field, went on killer hikes, and got luscious shakes every night made from local peaches. We still hike all the time and chatter away in the car and on the trail. We get meatball subs from Wawa afterwards or find a Dairy Queen and get Blizzards. We jabber on about Marvel movies or trips to national parks.
He’s my friend.
And I guess I’ll end with some photos. No big conclusion or takeaway, really.
This is us camped out in the farmer’s field near Shenandoah National Park.
This is Alex driving around the field.
Here we are at the top of Buffalo Mountain in Colorado, which was about the best hike we’ve ever done. At one point were hiking among mountain goats.
Here’s Alex trying champagne after Biden was declared winner.
Here’s him with his brother and mom on the Konza Prairie in Manhattan, KS. Note the rainbow.
There is a debate about what priority the COVID vaccine should be given. The official NuckolBall position is:
Vulnerable population (especially grandparents who are kidney donors/kidney donor recipients)
Major league baseball players and staff
Last year Jack Season was cancelled, so we had an extended Alex Season. We went all in on camping and had a great year for that. But this year it is pure Jack Season. It’s the final year I have with my boy, and we are planning as much baseball time as we can swing (and still afford college).
Here are the trips that are currently under consideration:
The Bronx Boo-Fest — When the cheating, worthless Astros come to the Bronx, Jack and I will be there to boo them murderously. We’re going to bang trash cans, hurl insults, and generally make their lives as miserable as possible. These lowlives deserved to be booed for the remainder of their careers and we intend to do our part.
The Lakes Loop — This involves driving to Cleveland, hooking up with Avi and Solomon Cover, and making an epic baseball loop. The loop will include Chicago (White Sox), Milwaukee (Brewers), and maybe…maybe….Minneapolis for the Twins. We’ve got multiple drivers to make this doable.
The Dallas Dash — We normally see Shani’s parents 3-4 times a year, but COVID has created a miserable dry spell. So the instant everyone is safe and vaccinated, we are getting on the road, getting down to Arkansas, getting everyone in the car, and getting our butts to Dallas to check out the new Rangers Ballpark.
The Aunt Joan Jaunt — It is ludicrous that we haven’t been to Fenway. Ridiculous. It’s 5 hours away and we actually go to Boston every year. Well that gets fixed this year. We’re making our annual Boston trip, and this time, Jack, me, and my Aunt Joan are going to see the Red Sox (hopefully lose).
The West Wildcard — The summer is tough to figure out. When will diving competitions come back? When does college start? Lots of variables at play, but we absolutely plan to pull off an epic family road trip. That could mean Phoenix, Seattle, San Diego, Oakland…who knows. But I suspect we’ll work in a park or two for sure.
Jack and I currently stand at 17 out of 30 ballparks visited. I think getting to 20 this season is a distinct possibility.
The boy has received his first college acceptance. Milkshake!
Here is the essay that Jack submitted. He worked really hard on it.
Discuss an accomplishment, event, realization that sparked a period of personal growth and a new understanding of yourself or others?
In 2017, the Yankees made the playoffs for the first time in 4 years.
I had grown up a Yankees fan from day one, but ever since I had been old enough to truly follow them, they had been just average. The team was old and, in all honesty, kind of boring. I found myself paying more attention to the league than the team. Then 2017 happened, and that season was different. New York became fun to watch again and I became entranced by every pitch. Instead of watching with my brain, I watched them with my stomach. What was once a hobby was now a religion. My mood fluctuated with the team, pitch by pitch, game by game. My life began revolving around the Yankees. I felt baseball in my soul.
That October, the Yankees made the playoffs and were set to play in a one-game, winner-take-all series against the Minnesota Twins. Although they were young, the Yankees were a much better team and were favored to blow the Twins out of the water. But instead, they immediately went down 3-0 in the first inning. I was stunned to the point that I was shaking. I got up from my couch, went into my room, and cried.
I don’t cry much, and I don’t know why. It may be because I don’t watch enough sad movies or don’t get into nearly enough sad situations. I guess it’s just not how I handle loss or sorrow. But there I was, head in hands, sobbing over a baseball game. At that moment I realized how ridiculous this was. I was a freshman, in the middle of one of the most important academic years of my life, and I was in my room crying over a baseball game. I was being emotionally moved by the actions of men I didn’t know, in a game whose result I had no control over. There are so many hobbies I could’ve chosen that would be so much more productive than this. My brother loves to cook, and his love for that hobby is productive. My mom is an adamant anti-gun violence activist, and spends relatively all of her free time working to help a cause she believes in, an activity that is decidedly productive. But, to an outsider, baseball is inno way productive. My enjoyment of the sport doesn’t benefit anyone but myself. The amount of effort I put into something so seemingly unproductive is ridiculous, almost childish.
It was a matter of seconds before I realized I was wrong. Baseball isn’t ridiculous, it isn’t childish, and it isn’t by any means unproductive. Baseball is my life. Baseball has been the basis of my friendship with two of my oldest friends. Without baseball, I can’t imagine that I ever would’ve made those friends. We grew up playing wiffle ball together in backyards and arguing over whose team was going to win on any given night. It is also central to my relationship with my dad, who is one of the most important people in my life. Some of my fondest memories are playing catch with my dad in parking lots across the country, and going to every stadium we could. Baseball is the background music to every one of my summers. It is everything. Without baseball, I’m not the person I am today. So, I don’t find this ridiculous or childish. I find it vital.
By the way the Yankees came back to beat the Twins. Then two weeks later they were knocked out of the playoffs by the Astros.