Joe has been writing on a new blog. You can find the latest two about treatment changes here:
Off guard.
The plan.

Five Years

Posted on Joe's FB Tuesday evening. Five years ago tomorrow night, just after 2200, Dr. Luana Hess walked into my little exam room at Wood County Hospital with a look on her face that I will never, ever forget.

 “You have a tumor on your kidney. A very large tumor. It may not be cancer, but…” – and she trailed off, the sentence unfinished because it didn’t need to be finished. “We’re going to admit you for the night.”

Part of me wonders how often she did it. How often did she tell people that they have a tumor? How often did she get to pull the first thread in the unraveling of a life?

Things changed so much, so fast in the first five days of diagnosis. “You are a VERY sick man,” Dr. Manuel De La Serna warned me. He, the night after, finished Dr. Hess’ sentence. Maybe it’s not cancer – but there’s more than a 90 percent chance that it is.

Percentages. A ninety percent chance it’s cancer. And as I learned that night from Dr. Google, a five percent survival rate over five years, if I indeed had Stage III or IV renal cell carcinoma.

Five percent. FIVE percent.
That number scared the hell out of me; it still scares the hell out of me. Five percent was what kept me up at night. Five percent was why I drove to the Basilica at Carey between diagnosis and surgery, and wept and wept and wept.

And then somewhere along the way, five percent became a motivator. Can I make it to that? Can I be part of that five percent?

So here I am today. I’m part of the five percent. In the five years to five percent we’ve been through three blood clots, two clinical trials, one brutal month of Interleukin-2. We’ve been through crises of finances, friendship, family, and most recently, faith.

Two months ago, if you’d ask me how I’d feel on my five year cancerversary, I’d have told you about the party I was planning in the back of my head! I’d stand atop the rooftops and beat my chest, and howl about the fact that cancer threw some good frickin’ punches, and I’m still standing. This blog, as prewritten in my head in February, was very different from what you’re reading now.
But the past 40 days of recovering from this blasted blood clot and related surgeries have done something to me, they’ve taken something away from me. I’m not celebratory anymore. I’m scared. 
Thursday, I’ll have treatment for the first time in six weeks. In two years, I’ve never been off nivolumab this long. I’m scared to death, scared like a little kid. Was this pause in treatment long enough for cancer to pick its ugly ass up off the mat and fire some punches at me while I was down? When I have scans in two weeks… what are they going to show?

I trust in the Lord. I really do. And I know that nothing between now and those scans is going to change anything. His will for me was written long before this week, and I hope I am strong enough to not just accept it, but embrace it.

Last Sunday, I broke down during Father Mark’s homily. It was the same homily so many of us have heard in so many different Christian churches. On Good Friday, even Jesus wanted God’s will to be different. On the cross, Jesus screamed out at his father, “Why have you forsaken me?!” I understand, and accept, that we go through our personal Good Fridays to get to the eternal life promised by Easter Sunday.

You know what the problem is, though, as I’m getting ready to leave for ANOTHER doctor appointment on this blood clot business? The problem is, I’m pretty greedy. I love this life. I love my wife, my kids, my family, my friends, my job, my community – I love all of it. And I want to hang out here longer. Not just a little longer, I’m greedy. I want to be around a lot longer. I want to have time to make new friendships, mend old ones. Hell, I want time to screw up more friendships, and then mend those ones up, too! I made it across this five year line, and man, am I ever grateful for it!!! When I got diagnosed, the kids were soooo little, and now they’ll at least have fairly vivid, fairly meaningful memories of me. But I sure would like more.

So instead of a chest-thumping five year party tomorrow night, I think I’m gonna take a long pull of sparking water, toast the past five with sincere gratitude… and drink to five more.

Blank Space

It’ll leave you breathless. Or with a nasty scar.

Maybe both.

There are a lot of parts of the past week I don’t remember. And that’s probably a good thing. But here’s an account of what happened, and where we’re going, as near as we all understand it right now.

Katie and I left BG around 4 on Friday for the BGSU-Maryland football game. She drove Angel – she always drives; my driving makes her queasy – and I rode shotgun, working on school stuff, and sleeping on and off. We made stops. Lots of stops. I was 2,000 steps shy of my daily goal of 12,000, and I was trying to get at least 500 steps at each rest stop. I folded myself up and slept a lot after 10, as we entered into Maryland on I-70.

At 12:30 a.m. Saturday, we arrived at Betsy and Ben’s, about halfway between Baltimore and Washington, and I fell straight asleep without pain, without a problem.

Two hours later, I woke up in pain. I hobbled into the bathroom and turned on the light. I looked down at my right leg, and it was definitely darker than my left. I looked around and the back of my calf, and there was no definition. I pushed on my foot, and it went fleshy colored for a second, and then went back to purple. In that moment, I knew this was another deep vein thrombosis. I hobbled back to the bed, and tried to wake up Katie, who’d only fallen asleep 50 or 60 minutes earlier.

“I think I have a blood clot, honey,” I said, as calm as I could. She wasn’t having it. “No, really,” I said. “You need to get out of bed and look.” She got up, and checked it out. I went out to the hall and knocked on Betsy and Ben’s door – “Hey guys, I need help. We need to get to the ER.”

I hopped downstairs. Katie, Betsy and Ben met me, and Betsy pulled the car around. Ben stayed home, the rest of us got in the car, en route the county hospital. The whole way there, I felt the leg getting worse. It got harder and harder to maintain composure. By the time we were in the ER doors, I was sure it couldn’t get worse. But it did.

It was visible even through my jeans that the leg was getting larger and larger. I couldn’t pull my cuff past my calf. I was in a ton of pain, but more than that, I was scared. There was a decided lack of urgency on the ER’s part, even as the patients ahead of me were checking out at the desk, so they could leave and get some McDonald’s, and come back. Triage checked me out, told me there was a line for the ultrasound, and they really couldn’t do anything for me but a vicodin.

If you’ve ever had one of these things, you know vicodin may as well be a lollipop. I was shakin in pain, but moreover, shaking in fear. Last time this happened, the word ‘amputation’ had been tossed around. And in the back of my head I knew that at any second, one little piece of that clot could burst off, and I’m done. Dead.

And the triage nurse’s suggestion? “You need to calm down.”

Oh. Thanks.

Finally, after nearly an hour, we got back to ultrasound, and the ultrasound tech was the first person who really saw that something bad was happening. As soon as she drove the probe into my leg, she’s like “Oh. Oh. Oh my. Oh. This is gonna hurt. This is textbook. It’s beautiful, I mean, I know it’s horrible, but this is textbook!” She got us to an ER room, where we got a great nurse, and a good doc. By this time, my pain is a 12 out of 10. Katie is stroking my good foot to get my mind to focus on that instead of the pain. It’s barely working. I’m not breathing. They shoot me with morphine, twice, and I feel the warm rush over my chest, but never even a sliver of relief from the pain. It’s horrible. My mouth dries out. The docs can see it, and they order up dilaudid. Finally, the pain comes down, even a little bit. Our doc is back and forth, trying to get a vascular specialist from Johns Hopkins on the phone. It’s fruitless. He tries University of Maryland Shock/Trauma, and finally hits jackpot. He tells us they’re trying to arrange the helicopter to come get me.

Helicopter? Oh, fudge, I think. This is more serious than I thought – and I thought it was pretty serious.

Betsy and Katie negotiate on who, if anyone, should ride the helo with me. Betsy’s an old pro from her time with the Coast Guard, Katie – well, if you think my driving in the Corolla is nauseating, wait until you meet my old friends pitch and yaw!

As we’re figuring that out, they come in and say, nope, you’re going in a regular-old ambulance. Time passes

And

So

Do

I

* * *

The dilaudid dream state envelops me. And my memories from this point around 0600 Saturday through Monday morning are really, really sketchy. I remember getting strapped onto the transit stretcher, and bumping up into the ambulance; two-person team, both with big personalities, and I remember thinking that I wasn’t sure I was ready to deal with big personalities. I can see just enough out the back window that I know we’re having a tough time getting out of the parking lot, and then I see runners. Later I learn that there was a 5K run that morning at the hospital.

Bitter irony, that.

Occasionally, I can peek over and see Betsy’s car trailing us. Traffic picks up, and the highway widens, and I assume we’re getting close to Baltimore. I see the metalwork of a stadium.

“Is that where the Ravens play?” I ask.

“Yeah,” says the paramedic in the back of the ambulance with me.

A million awesome Cleveland insults and retorts go through my mind, and then I remember that I’m strapped to a bed with needles in me.

“Oh.” I say.

The ambulance rolls into an ambo bay that’s like something out of Robocop, concrete, steel, stink. They get me out, and the jarring ride over long-neglected city streets has me squealing in pain again. Katie hops out of Betsy’s car, and is by my side immediately. We go into an octagon of elevators that’s like something from Harry Potter. Which door will we choose?

We go up a floor. Wrong. Down to another floor. Wrong. Ambulance crew can’t remember where they’re taking me. We go back to the Chamber of Secrets, and dash down another hallway to an elevator that he’s “pretty sure” will get us where we need to be.

We hit the sixth floor of the shock trauma building. It’s the Critical Care Resuscitation Unit, and there ain’t enough dilaudid in the world to calm me down now. They roll me right into a room, and there’s a team of 6-8 doctors and nurses waiting for me. They know who I am, everything about my history. I’m more than a little freaked out, because I know they aren’t rolling out the red carpet to be polite.

Again, the details come in and out for me. My pain is, most assuredly, under control, because I barely know who I am. I remember Betsy coming in at some point; I have no memory of Ben coming in, though I know he did. I remember us turning some college football on the TV, but being bummed we couldn’t get the BTN for Maryland-BGSU. A surgeon comes in, a wryly funny guy, Sri Lankan. He sets out the options: We can do this like they did your last one, blast you on heparin for a week, and let you out of here, hoping the clot goes away. Or we can do a surgery, not without its risks, that will remove as much of the clot as we can, and a follow-up surgery the next day. Option 1 keeps you in here for a week, no surgery. Option 2 could have you out by Tuesday or Wednesday. On timeline alone, we choose the surgery. We FaceTime with my mom, dad, and the kids, who are all up at the lake. I remember the kids looking really scared. When I talk to Joey, I tell him I have some bad news. He starts tearing up a little. I tell him I can see the Ravens stadium from the hospital, and it’s TERRIBLE. He laughs his big, full, from the toes laughter, and I feel better. I pray his laughter always will have that effect on people.

By 2 p.m., they’ve got me wheeled out. I’m scared inside, but not sure how to express it outside. I remember them getting me to a hall of operating rooms, and I tell the nurse I really have to pee. She gives me a urinal. And I sit there for the better part of five minutes with shy bladder syndrome. The anesthesiologist comes through to explain what’s planned.

“We’re not going to put you all the way under. I’m going to be monitoring you, and we’ll put you in deeper, but never all the way under.” Then they tell me they’re gonna catheter me. Without being all the way under. I freak. NOW I’m able to pee. My nurse is disapproving of the sleepytime docs. I’m anxious, again, as we go into the OR. I remember sliding over to the operating table. I remember a mask over my face. I remember waking up, and being asked to roll on my belly, and as I do, I REALLY notice I have a catheter, and then, I’m blanked out again.

* * *

Four hours later, I wake up in a dark room with a curtain. As I remember it, I see a doctor or nurse, and said “On your left,” in the most awesome Captain America joke I’ve ever made. As the nurse told it to me a little later, I woke up and asked if the admiral and the director knew what had happened to me. Which admiral, and which director, I do not know.

And this is where my blank spaces get really, really blank. I remember virtually nothing from the rest of the evening, except that I couldn’t ever seem to get my left leg comfortable. This, it turns out, is because there was a large drain coming out the back of my calf. I’m honestly very glad I do not remember much of this. I remember telling everyone how hungry I was, and then eating two bites of a cookie and nearly vomiting.

Sunday morning, I apparently wake up to a text from JD. Then, I am told, I call him at an indecently early hour and prattle on about God-knows-what. I text my nurse from the Cleveland Clinic, Laura, about my condition. She texts back and asks how I am doing, and I shoot a selfie with my tongue out. I do not learn about this until Thursday. I find myself very grateful today that I apparently didn’t do any worse than that.

Around lunch, I start remembering a little. I remember them saying my second surgery was going to be in the afternoon. I remember Katie having to leave, to go home and be with the kids and try to keep the ship together through this storm. I’m scared to see her go. I am teary, and scared. There’s still one more surgery to go. I tell her to tell the kids, and a friend who's been a blank space way too long, that I love them. I cry a little when she leaves. I cry a lot later, and they bring me xanax.

I may not have Katie physically by my side at this point, but I have Betsy with me, and she’s a rock. Absolute champion. I remember Kristin getting to the hospital, arriving on a train from DC; and one of the greatest hugs I’ve had. I remember two fantastic nurses, Christina and Tina, more than anything else on the hospital-side this day. They’re awesome.

Then it’s back to surgery. Back in the haze. Back in my room, and not knowing where I am, again. Kristin leaves with Betsy while visiting hours take a two hour hiatus for shift change. I cry again. I sleep, a lot. I FaceTime with home. I FaceTime with my sister and her family. I try to make some videos for my classroom, which is a little of a blank space in my heart – I want to be back with those kids. My kids. My biologic kids, and my East Side kids.

* * *

Monday morning, I start to come out of it all. I have a new nurse again, Katherine, and she’s fantastic. Betsy is back; Kristin is back. Think about all that for a moment, and it brings you to your knees in thanks. A sister in law, and an old time bestest of friends, totally skipping work to make sure you’re OK. There’s almost nothing more humbling.

The fog is lifting. I have one vicodin today, and that’s it. The dilaudid’s gone, and the goofy gas from surgery has worn off. My mind is back in action, and that’s a little dangerous, because I have zero information. I don’t know what the plan is. I don’t know what they found, and I really don’t know what they did. Kristin and Betsy start filling in the details, and they talk about a blockage in my inferior vena cava. The way they talk about it, I am sure they have something wrong. That’s what they found on the left side, right?

I get frustrated. I feel pretty decent. The catheter comes out. Katherine gets me out of bed, and I use a walker to hobble around the room a bit. I poop. I’m ready to go home! But I still don’t know the plan. The doc in charge of the ICU tells me I’m cleared to go to a ‘regular’ floor, but there aren’t any beds. And as long as I’m in the iCU, I have to be hooked up to a bunch of monitors and whatnot. I’m more frustrated. I want PT, so I can check that off my list. OT, to get me another step closer to the door. Katherine keeps working with me, and gets me out of bed a couple more times. Betsy saves the day repeatedly with pita bread. My stomach is still in open revolt. I’m afraid of what the hospital meals might do. So I eat warm, soft pita. And it’s the best thing I’ve ever eaten.

Another shift changes, and Betsy and Kristin are off again. Kristin’s back home to the District, Betsy’s back after shift change… with more pita! It’s night again, and I watch the Orioles. Late that night, Jerry – a man who is a friend through a friend – shows up in my room. He works with Hopkins’ APL – he’s a lawyer who deals with issues surrounding space exploration – can you even imagine how cool that is? We talked about a probe they’re sending to the Sun, with a delicate dance between protecting it from the star’s power, but getting enough data through to be scientifically meaningful. And we talked a little about those old Voyager craft, leaving the solar system, drifting into blank space. I start to drift, too.

* * *

I wake up at 0600, surrounded by vascular docs. Finally, I am awake and aware enough to start asking questions. What happened? Where do I go from here? They explain that the IVC was completely blocked – in surgery, they worked up into upper leg and pelvis as far as they could, but there’s still significant blockage there – as if it had been sewn shut. They tell me that the contrast showed that my body had adapted significant alternate pathways for the blood, that may be enough to keep things going down there. They tell me they’ll get me out of the hospital today – music to my ears – but have to wait on a few reports.

This Tuesday drags on. Every time the broken curtain opens, I expect the news of discharge, but it’s a plumber to fix the toilet, another piece of paperwork, another delay on getting scans. The bright spots through the whole day are Kathleen, who for my money, may be the greatest nurse who ever lived, and the doctor-in-charge of the floor, a maxillofacial surgeon who absolutely exudes cool. They’re fun people. Kathleen and I share Jesuit heritage, and we have a few cool moments talking about lives influenced by the idea of Ad Majorem Dei Gloriam. PT comes through, and I nail it – down the hall without a walker, up the stairs, down the stairs, back to the room. I am cleared. Within hours, the papers come, and I go back home with Betsy, to see Ben, who shouldered all of the baby burden, and Tessa, cute as a button. I’m cleared for flight the next morning, to make it halfway home.

* * *

Well, maybe not flight. Sitting’s a bad idea, a procession of doctors tell me that last day. Long flights aren’t in your vocabulary anymore, one says. You don’t do long car trips anymore, he continues. You’re up and out for 15 minutes every hour of driving. I watch my autumn plans fall apart – the long anticipated trip to New Orleans for the “Understanding Sacrifice” roll-out, gone. A few other hoped-for trips, probably not happening. I’m sort-of grounded.

And I start to realize that grounding is probably going to have other effects, too. Running on the one bad leg from the 2011 DVT was tough. It’s probably just not possible on two legs with reduced return capacity. Biking is out forever; I’ll be on blood thinners as long as I live now, injected twice-daily into my abdomen. So I guess I’m a swimmer now. Or a stationary biker. I like swimmer better.

It’s going to be a lifestyle adjustment. It’s going to be a reinvention of who I am. Travel and running – that’s who I am. Or at least, a big part of who I am. I guess it isn’t so much anymore. I am working around grieving that in my head and heart right now. That’s the blank space far bigger than all the details lost in the dream-state of drugs; a blank space in my personal identity, who I think I am.

* * *

I’m in the books for vascular follow up at Cleveland Clinic, possibly as soon as next week. It’s entirely possible there’s a big surgery looming in the wings. I hope not with all my soul. It’s also possible my situation just is what it is, and we live with it.

The blankest space is the space of not knowing. I just don’t know what’s going to happen. I have scans in less than two weeks now; it’s been easy to forget with the crisis of the last seven days that I still have that pesky Stage IV cancer. The weeks leading up to scans are always difficult, nerve-wracking, knowing that it’s possible you get that news of growth, and then a dwindling set of options.

That’s why we still said yes to treatment on Thursday, even after all of the immediate scare. This blood clot battle is dodging a bullet. The cancer battle is still a BLU-82 waiting to detonate. And it’s scary. It’s all really scary.

I’m grateful for the spaces that aren’t blank: Family – blood and adoptive – who have come through in so many ways. Friends who have been there for all of us, 500 miles separated over the past week. And especially for faith. I have been praying a set of prayers for the canonization of Mother Mary Alphonsa – a daughter of Nathaniel Hawthorne who formed a religious order caring for indigent cancer patients at a time when they were cast aside by others’ fear of ‘catching cancer.’ I don’t think it was an accident I had a Jesuit-influenced nurse for half my stay. It wasn’t an accident my Aunt Nora took me to meet Fr. Paul Burke, chaplain of the Hawthorne Dominicans’ Our Lady of Perpetual Help home in Atlanta, who prayed over me, and told me about Mother Mary Alphonsa’s cause.

A lot of you have asked what you can do for us – and honestly, right now, we don’t know. We have no idea what the tally is going to be for the last week's transport and accommodations, but I am guessing you could do a two-month, round-the-world trip for the pre-insurance cost; we aren’t sure if I’ll be in the hospital for another surgery on the IVC. Who knows? But the one thing you can do, if you’re the praying type (and I take absolutely no offense if you’re not), is pray for Mother Mary Alphonsa’s sainthood. She needs a miracle… and so do I. Your prayer might fill a couple blank spaces.

(http://www.hawthorne-dominicans.org/rose-hawthorne.html)

New York Stories

I’ve been writing this all over the course of three days. I still struggle to understand just the names, dates, places, and facts of this experience that I’m trying to describe below. Even more difficult to understand are the much larger issues of the spirit of this experience. I hate to use the word ‘overwhelmed,’ because it just doesn’t adequately explain all of the emotion we’ve experienced. At some point I think those words will come.

All of this is happening in the context of scans coming up tomorrow. I am always nervous about this. I am more nervous about it in the context of a conversation I had with a friend at Kroger the other night. He’s a member of a special little tribe with me, and one of the things that we’ve both learned is that lives generally have ups and downs that are proportional, and that the trick in life is bringing all of it back to a tenable center.

Call it karma. Call it fate. Call it whatever you like. I have tried really, really hard not to get TOO 'up' through the past two weeks with the spectre of a 'down' on the horizon. But all of that is in the future. Here’s the story of the past four days.

###

The past four days have been so busy, so magical, and so deeply spiritual that it is hard to even get my mind wrapped around it all. I haven’t been able to process it through to write it with a theme in mind, or some kind of really great hook. I also want to reply to EVERYONE who has shared something, and asked questions about what’s been going on, and eventually, I will, but as we move into what might be two of the only four weeks we’re all at home at the same time this summer, I am trying to cram a lot into our days!!! So here’s the long-ish version of what have been four of the most unique days our family’s spent together. And I WILL get in touch with all of you eventually!!

Two weeks ago today, we found out the Today show thing was a possibility, and one week ago we were really, really sure it was going to happen. With that, last week became a frenzy of answering questions from New York, sending pictures through, and then talking with people in local media about the upcoming experience. At the same time, we were all trying to figure out: Who has pants that are decent for television? Whose armpits are too stained (that would be me)? Concurrent with all that, I had 23 kids I needed to get through the social studies OGT! I was definitely in the mode of not even thinking, just moving from one task to the next.

So Thursday afternoon, I get a call from a guy with a phone number from up by mom and dad’s cottage. He said he was from a courier service, and had a package to drop off. As I talked to him, I had that pit-of-the-stomach feeling that it had to be something bad; collection from the Clinic, collection on other med bills, or, best-case scenario, registered delivery papers from the bank on our re-fi (fingers still crossed). Ellie was convinced it was Volvo, hooking us up with an Ingrid replacement. I allowed myself five seconds of daydream on that. Friday afternoon, I was driving back home after OGTs, and on the phone with mom, and she told me that dad was heading up to the lake, because they were supposed to drop off the re-habbed engine to our old float boat up there. I said to her, my God! The courier who called me the other day had a Williams County number! I wonder if they found my name, and they’re bringing the outboard engine over to my house?! And then I'm panicking, thinking, holy crap! How am I gonna get an outboard engine up to the cottage?!

You all know where the story went from there. Joe Brenner from Thayer shows up in our drive with Angel, from an Angel. Friday afternoon becomes a fantasy whirlwind, and at 4:40 when we get home from the dealership we realize, holy cow: We still have to pack for tomorrow morning!

Friday night was about as frenzied as you can imagine, as we threw together enough clothing options to be ready for any eventuality, and then tried to calm our hearts and heads for a halfway decent night of sleep before an 0430 alarm so we could make it to DTW for an 8 am flight!

Blessedly, we got up and moving without too many spazz-outs, and caught our plane with time to spare. The magic of the weekend started as soon as Mark and I got to our seats in the very last row of the CRJ. The flight attendant at the back, Alex, saw Mark’s Indians t-shirt, and approved. He asked us where we were from, and told us he was a West Sider. We talked Tribe and Browns in between his duties. Halfway through the flight, he tells Mark, “I have someone for you on the phone,” and hands Mark the intercom phone. Mark talks to the pilot for a couple minutes, and then hands the receiver back to Alex, who tells us to wait around when the cabin clears, and Mark can go up to sit with the pilots.

We make our approach into Newark, and the Manhattan skyline unfolds on our side of the plane. I point out the skyscrapers to Mark, and he’s not so impressed. The container yards and cranes, on the other hand, have him absolutely enraptured! The plane lands, people get off, and Mark and I go forward with Alex. The pilot gets out, lets Mark crawl up into the seat, and this kid’s grin goes ear to ear. When we walk up the jetway, Katie and the other two are wondering where the hell we’ve been until they see that smile, and a very silver pair of wings pinned to Mark’s shirt!

A guy in a well-tailored black suit is waiting for us at the bottom of the escalator with a sign with our names. It’s the second-best arrival I’ve ever made in another city, the first-best being Jason Peiffer waiting for me at Gulfport, Miss. 15 Mardi Gras ago, with my name written “BOIL” in magic marker on the back side of a ripped up Bud Light 12-pack.

We hop into a giant Escalade, and fly through Jersey, kids agog at the skyline, into the Lincoln Tunnel, and emerge in Manhattan. The kids are instantly on 11: “Look!! Pigeons!!! They’re everywhere!!!” “Dad, I think this is where Sesame Street is!” “Hey! People actually have dogs here!”

We arrive at the Crowne Plaza Times Square around 11, and we’re already exhausted. We check our bags while waiting for our 3 pm check-in, and up the escalator comes another of our angels, Kristin Stadum. A couple hours later, on the subway, a random stranger asks Kristin if we’re family, and I tell him “May as well be!” How long have we been friends now? More than half our lives. She came up on the bus the night before, and not only could we not have asked for better companionship, we couldn’t have asked for a better guide. She vectors us to a little hole in the wall Italian restaurant, and we all have a hearty, awesome meal before going ‘splorin.

After lunch, we catch a train down toward the World Trade Center. We angle over toward St. Paul’s Chapel, and the haze of the last day of Spring obscures the top of the Freedom Tower. Through a construction walkway, we make our way to the memorial. We try to explain 9-11 to the kids. It’s really hard to explain 9-11 to kids.

We cut over toward Federal Hall, and I take the kids up to the steps, and try to paint the scene of Washington’s inauguration, and the procession from Federal Hall down to Fraunce’s Tavern. Down Broad Street we go, desperately searching for a restroom for Mark – which will be a recurring theme the next 28 hours!!! The kids roll their eyes at each photo op, from Bowling Green station, to Castle Clinton, until we finally get one of those “WHOA”s that parents and teachers secretly delight in. They look across the river and see the Statue of Liberty, and Joey starts popping around the sidewalk like a set of firecrackers. It’s a pretty great moment.

 

The adults sit down for a while near Castle Clinton, and the boys chase pigeons. They are big fans of pigeons. Ellie and I walk down to the Merchant Marine Memorial, and eventually we all walk over toward the ABMC East Coast Memorial Tablets. So. Many. Names.

Around the tip of Manhattan we go, and get the kids a glimpse of the heliport and the Brooklyn Bridge, before catching a train back to Times Square. Kristin and Ellie lead us through the crowd, hand in hand, and my heart smiles. We get back to the hotel, Kristin meets a friend, and Katie and I nap. The kids, full of the nervous energy of a city that never sleeps, don’t. We grab dinner in the lobby, and then head back out on the town at night. First, Radio City and Rockefeller Center. A brief glimpse inside the Today studios to see what we’re getting into in the morning; a walk-around on Fifth Avenue, a hike over toward Stark Tower, or if you’re into ‘reality,’ the MetLife building. I screw up the directions. Kristin saves the day (again). We walk through the MetLife building, we go down an escalator, and I have an amazing moment of déjà vu from a dozen years earlier, as I waited at the bottom of this escalator for Chris to get off work!

We find bathrooms, again. I point out the location where Hulk punched Thor. Katie, the voice of reason, says we gotta get back to the hotel before we turn into pumpkins. I get switched up, again. We double time back to the hotel, and I can feel my fatigue coursing through from my core. My legs start getting heavy, and my head starts to throb. Even the boys are complaining of being tired… and they never get tired.

The boys and I pass out in our room. Throughout the night, I wake up with nightmare after nightmare of being late, or missing the show entirely. Six o’clock rolls around and the alarm dutifully goes off. The boys and I get ready, which thank God, consisted of putting on T-shirts and shorts. We meet up with the girls, who look a lot nicer than us, and mosey down to the garage where another black Escalade picks us up for the short hop over to NBC. The SUV slides to a stop in front of the studio doors, and we get whisked into the security desk. 

We get checked off “the list,” and led down a gorgeous, golden curved staircase to the basement of Rockefeller Center. Gorgeous, 1930s-era murals of transportation surrounded us. We checked into one green room first, then were taken upstairs to a second green room. As they hustled us in, I saw a coat rack, with stick-on labels for “Matt,” “Savannah,” “Al.” I asked for the bathroom, quick. Turns out I haven’t outgrown the old nervous poops. We tried to figure out where we were, because we could see out to the street, and the street could see into us! I texted Kristin – who had used her airline miles to get my sister in for the show! – and told them what window to look for. When I saw them, I instantly felt less nervous about everything!

People came and went from the green room, and at about 7:30, the pace and tone of everything intensified. Sound guys hooked us up with mics, the makeup artists took Katie and I upstairs a couple levels to get us squared away. We made faces at Kathy and Kristin, and met a guy named Zack, who caught A-Rod’s 3,000^th hit, along with, apparently, some 8,000 other baseballs over the years. He was a hell of a character, and kept us entertained with stories as the hair and makeup people finished with Katie. The show was underway out on the plaza, and we saw young hipster barbers working some sort of magic on bald guys. A big grill was set up for a food segment. And the whole time, I was watching this digital clock counting us closer to 8:30, and getting really, really nervous.

Maybe around 8:20, we were escorted to the backstage area. Lump in my throat was the size of an orange. They brought us out to the couch to settle in. We were bug-eyed. The cameras were much bigger, and the studio much smaller, than I ever imagined. One of the cameramen came over to talk with me, a cancer survivor himself, with a happy ending. God, I love cancer stories with happy endings!!!

Craig Melvin and Erica Hill stride into the studio from their outside shot, cameras move around, a director puts us in place in front of the windows, and quick introductions are made. I have no idea at all what to do with my hands. The anchors introduce the piece, and cut to tape. We see the tape rolling, and it is absolutely surreal to see my life flashing on screens before my eyes. They come back to us live. I think I’m talking, but not sure. I hope that I’m making sense. I quote Fred Beier with a little “true story.” And then they start to spring the surprises. Before we left, the most popular parlor game among our friends was “Why is Today flying you guys to NYC? Why not just do the taped story?” Some thought it would be an Oprah moment with a car for you! And you! And you! I was still convinced New York was the ‘big prize,’ after all, this was a pretty damned expensive trip for NBC to fly us all out there and put us up!

You all know what the surprises were. I sort of wondered if Captain America would be part of our day, so I was surprised, but not shocked when Cap walked onto the set. But I was absolutely flabbergasted when he told us we’d be going to the filming of Civil War. If you’re a big enough comic nerd, you know that ABCDisney ownes the Marvel Cinematic Universe franchises, and I was kind of processing “BUT HOW DID NBC PULL OFF THIS????” when they came out with the Indians surprise, and said ‘…first pitch…’ and at that point, I don’t think I even knew what my own name was, and then they hand me the jersey, and asked whose number it was… and I blanked. Bad. Thank GOD Katie was right there and picked up on something Caroline had off-handedly mentioned to her about Cory Snyder. Katie whispers a prompt, and then I’m like, OF COURSE! CORY SNYDER! And, then, HOLY CRAP. I’m going to meet Cory Snyder!

Vinny wrote me something afterward along the lines of, ‘the 12-year-old you just had the best day of his life – Captain America and Cory Snyder’ – and he’s absolutely right. And let me say, for the record, that the 40-year-old me would trade all of that in a hot second to not have cancer!!!! (And I mean it. If my scans are clean on Thursday, they need to pick someone else for all of this!!!)

Just as soon as it was started, it was over, and the anchors moved over to the couch area, and we were trying to be as quiet as church mice, whispering back and forth with Captain America, and getting pics of the kids holding his shield, and waving out to Kristin and Kathy and blowing kisses. Caroline walked us back to the green room, and Lester Holt was sitting on the couch as they broke out the champagne for his last Weekend Today. He said “hi” and “Good luck” to us, and all I could come up with was a cheery “Hi, Lester!”

On our way back, Caroline introduced us to a rep from Marvel, who had a goodie bag of shirts, bobbleheads, and Captain America figures for us. And just like that, it was all over. Caroline walked us out to the plaza, and I ran across to hug Kristin and Kathy.

And that’s when I finally cried. That’s when it all caught up with me.

We got a car back to the hotel; Kristin and Kathy beat us on foot. We checked out of the hotel, and walked to Ellen’s Stardust Diner. The entertainment was great; the chocolate chip pancakes better than I make at home, and a waiter came through finding the birthday people, and we volunteered Mark – who was a champ, and spoke loudly and clearly into the mic! After lunch, Kathy and Kristin left to check out of their apartment, as Katie and the kids and I worked our way up Fifth Avenue to the soon-to-close FAO Schwarz. The toy soldier guards were awesome with the kids, and inside, it was hard even as an adult to contain your glee. Men flipping little foam planes sucked us in, and hell, we bought one. Kristin and Katie caught back up with us, and we said goodbye to Kristin as she headed back downtown to get the Bolt back to DC.

Down Fifth Avenue we walked, past Gucci, Armani, and lots of places so fancy I have never heard of them. We went into American Girl so Ellie could look around and dream, and then the LEGO Store so the boys (and this big boy) could dream! Around the corner was the FDNY experience, and we got to talk with a couple of firefighters who work this educational mission, and sell FDNY merchandise on the side (and seriously, what better souvenir can you buy than something from the fire department?!)

We walked back to the hotel, and cooled our heels in the lobby. Ellie and I made a mad dash out into Times Square to get I (heart) NY shirts, and then we all walked a mile across the island to see the USS INTREPID. No sooner had we gotten to the ship, and our car for the airport called. He’d arrived early, and we hot-footed it back to the hotel, grabbed our bags, and dripping in sweat, hopped in the car, snaked through traffic on the east side of Manhattan, and made it to LaGuardia with time to spare.

And with that, a plane, a delay, a flight, a drive, and then home. Such an adventure. Such blessings. 

Father's Day

I think it was at Uncle Tim's house, the old one, that there was a little thing in the bathroom that said "Any man can be a father, but it takes someone special to be a dad." And even if that wasn't at Uncle Tim's, it may as well have been, because he's one of the best dads I know, and he's one of the first people I think of whenever I see that saying. 

In fact, there are a lot of best dads I know, starting with my own dad, who worked, and works, tirelessly to provide, past exhaustion, past any reasonable limits, and provides guidance, love, and more love. Katie's dad, who is the most unflappable human being I know. My brother in law, Aaron. I think of both of my grandfathers; I think of my uncles. I think of Uncle Harvey - FATHER Harvey, who was a dad to hundreds of boys in Monroeville and Norwalk over his decades of service to the Church. Uncle Paul, another dad to me from beyond the grave. My cousins, especially Danny, who is the single best dad I know, or can even imagine. I think of so many of my pals from high school, old dads and new (REALLY new, Patrick Kennedy, Josh Kaufmann, Neil McElroy, Colin McGinnis!!!) who are great dads. Colleagues, neighbors, friends. Guys I see teaching their kids how to hit their woods at the country club (sorry, Ellie, Joey, and Mark, you got the wrong dad for that). JD, doting over the dance shows, dads of students I've had. And I have a sneaking suspicion that all of them have the same little nagging thing in the back of their heads that I do:

Dear Lord; PLEASE do not let me be completely $%&ing this up. 

I take the role of dad more seriously than anything else, be it with my three biologic kids, or with some of the incredible kids that have come through my classroom and into my heart over the years. But I know that I get it wrong more often than I get it right. Sneaking them pop. Stealth missions for a small vanilla cone with rainbow sprinkles. Teaching them colorful new vocabulary words while working on the car. Or the plumbing. Or with a hammer. Or the TV. Or shelving books. Or cutting onions. Um, yeah, you get the idea. 

So, it's not with just with the humility of knowing damn well that I fail more often than I succeed as a dad, but with absolute shock and bewilderment that the following series of events went down the way they did over the past 96 hours or so. 

Last December, when I decided to run the Mohican 50 as a fundraiser for Dr. Rini's research at Cleveland Clinic, I got put in touch with Chelsea, in the Foundation's giving office, and Katrina, in communications. Chelsea helped with the back-end organizing part of the ultra fundraiser, and was the brains of reaching out to larger donors to find a way to really generate some substantial money for the mission of beating kidney cancer, maybe not in my lifetime, but laying a foundation for down the road. Katrina was trying to get the story to media outlets to consider as a feature, and drive the mission a little further. Well, of course there were the unpleasant (unpleasant enough that I still don't want to talk about them) problems I had that sidelined me from running throughout March and most of April, and then two weeks after I started running again to get training back up to speed, I had the stress fracture in my left tibia. I told Chelsea and Katrina, well, you know, ballgame. It's over. Maybe I'll try for an Olympic Triathlon in the late summer or something, but the Mohican 50 isn't happening. So the event was off, stories were off. No big deal.

Except they weren't.

Monday, just before the end of my summer school day, I had a text message from Katrina to call ASAP. NBC's Today Show wants to do a story on you for Fathers' Day, comic-book-nerd-dad-with-cancer-angle. I texted back, "ARE YOU SERIOUS?" 

The speed with which this moved after that was breakneck. On Tuesday, I had a phone interview with a producer named Caroline, who is just awesome. Talked to her for an hour or so, and then she flew in and spent all of Wednesday night at the house with us, shooting interviews with me, Katie, and the kids, and then filming us being normal. And if you know my boys, you can just take a wild guess at how THAT went!!! Thursday, she followed me in to work at Scott High's STRIVE summer program and then followed me,  JD Pooley, and Ingrid out to Cleveland for treatment.

(One of the funny parts here is that, about two weeks ago, JD said, "Hey, can I follow you out to Cleveland to do a video on what this routine is like for you?" and I was all, "Yeah, man, that'd be fun!" and we were talking about it being all guerilla-style with an iPhone and totally under the radar. That video is at https://www.youtube.com/watch?v=Pm4BD2QUjP4&feature=youtu.be , and it's really cool - it really captures the vibe of my days, and I hope, maybe demystifies this and makes it a little less scary!)

So, long story longer, we are all flying out to New York next Saturday to be on the Sunday morning show live. It airs from 0800-0900, and I have no idea where in that hour we'll be. We're planning on cramming as much New York into the 30 hours or so we're in town as we can; heading down to WTC and Battery Park so they can see Ellis Island and the Statue of Liberty, hopefully the East Coast Memorial Tablets (I mean, c'mon, it's me, you know I'm gonna lobby to see something WWII related), head back up to where we're staying in Midtown, and get them to Times Square at dusk, do the show Sunday morning, and then...

Wait a minute. Did I just use the phrase "Do the show?" Do people really say that? Sure as hell, people like ME don't say that!!!! 

... and then poke around Midtown, maybe go up to Top of the Rock or Empire State Bldg to get them a real 'big city' experience before we fly back! 

All of this is why I've been kind of social media silent the past three days. Number one, we were busy as hell. Tuesday, we busted butt to get this place clean enough for the cameras, and then Wednesday and Thursday we were on the crazy schedule with Caroline here with us. I'm sorry if I have been sort of out of touch during this time! Number two, we were sure how long we needed to keep this secret or anything, but I got the all-clear yesterday, and we just wanted to sort of take a day to pinch ourselves and make sure, this is really happening, right?

We are so incredibly excited about this whole thing. More so, because of something that, at the time, seemed insignificant last weekend. Ever since we cut cable, we've had an Apple TV that streams old pictures to our TV when we're not watching stuff. Some pictures of the last trip Katie and I took to NYC, when she was about four months pregnant with Joey, were cycling through, and the kids were asking this and that about New York, and one of them asked, "Can we go to New York City sometime?" and Katie and I just laughed it off. Yeah! Right! No way, Jose! And then, here we are. Totally surreal. And, I think, totally not an accident. 

Every other Thursday

Diagnosed with renal cell carcinoma in April 2011, in the past four years Joe has parted with one of his kidneys (as well as its tumorous companion), and undergone extensive and experimental treatments at the Cleveland Clinic and University of Michigan Medical Center.

The current treatment plan includes bi-weekly trips to the Cleveland Clinic—a round trip of over 200 miles. He’s been making these bi-weekly journeys for over a year now and there is no end in sight.

More: http://alittlebirdie.org/136

Meant to do

“This is what you were meant to do.”

It was said to me this week, twice. I said it to someone, once. And meant it.

###

I’ve written in this space quite a few times about the magic of the fallen hero project. Saying these names, researching these lives, watching kids make connections to the past; it charges the atmosphere. It electrifies particles. It brings things back for people, and brings people back for people. It heals.

Ever since the Blade article ran a couple weeks ago, and was reprinted in the Dayton paper, I’ve been getting a lot of calls. Some are vets. Some are vet’s kids. Some are interested members of the community. They send things; lots of books about the war, and from the war. One lady sent doll furniture a relative made in a POW camp. A flag. A uniform hat. Some medals.

Sometimes they send something less tangible, yet more real.

Thursday, Hazel in our main office put a call through to my classroom from a lady whose dad had attended Waite, but left early to join the Army in World War II. She was wondering if I could help him get his diploma.  As I talked with her, it didn’t sound promising. She could give me her dad’s name and birthday, but nothing as far as company, regiment, division, much less serial number.

I told her this wasn’t my first rodeo with diplomas, and that there’s a process we have to follow, and it takes a while. She was totally cool with that. I hung up with her, and promised to call back at the end of next week to get the ball rolling. On a whim, I decided to go over to our records office and pull his permanent file – yes, they exist. And one of the myriad awesome things about Waite is that they exist going back nine decades, and they exist in the building.

I’d post a pic of this transcript, but I’m afraid even 75 years on, that might be a FERPA violation. At the bottom of the transcript are notations in red that I’d never seen on a transcript before, “4 sem credits for basic trg,” “1 sem credit Investigator 301 under British supervision,” and then the gobstopper: “Graduated Oct. 1, 1945.”

So, I thought, story over. He got it. He forgot about it.

Except he didn’t. I’ll spare the details, but Hazel put me in touch with a lady at the Board, who put me in touch with a man at the BGSU archives, and he pulled the Board minutes from the fall of 1945. Sure as hell, there’s our guy listed with a bunch of other veterans, whose diplomas were granted… but not necessarily delivered. I went from my classroom to my principal’s office to see if maybe we could get the gentleman in our graduation ceremony on June 5, and he said, without a blink, let’s do it.

Just a half hour after I told this lady I’d be back in touch with her in a week to start the process, the process was essentially done, except for one small detail: He has to say yes. So Wednesday morning, we’re meeting with this man – this HERO – to ask him to do one more courageous act in a lifetime full of them. As I learned in records I scoured from NARA last night, he was taken prisoner by the Germans at Kasserine Pass, survived a grueling trek north to Stalag IIB in Prussia, endured two years in that work camp, and then pulled through a three MONTH forced march of 14 miles a day as the Germans tried to keep the prisoners ahead of the advancing Red Army. Will he take a 100-yard walk to accept a diploma, and send a more powerful message to our seniors than any speech could ever convey? That’s the one remaining question.

###

When I called the daughter with the news we could make graduation happen this week, near the end of the call she told me “God’s telling me to tell you that you’re doing what you’re meant to do.”

Independent of that, in the main office this morning, Hazel told me, “You’re doing what you’re meant to do.”

Same words.

Same source.

Same magic.

Same tears.

###

There is a spirit that moves through this project. I don’t mean this in an intangible way. I mean that the spirits of Paul Boyle, Willard Begel, John Kulp, Joey Vanasky, Budd Frazier are quite literally (and yes, I know what literally means) moving through this project, moving through us.  I’ve talked about this with a good friend. We both feel it. I know others feel it, too.

THEY are the ones doing what they’re meant to do, right now,right here, seven decades after death.  Is there an afterlife? You tell me.

THEY are moving me. THEY are moving these kids through the Fallen Hero projects. THEY drive a woman to call the school after she sees a piece on the 5:30 news. THEY spur a 70-year-old lady in Springfield, Ohio to send me a soldier’s French-English phrase dictionary.

I found myself wondering this week: If I were healthy, if I were cured, what would I do with this? Find a way to teach the WWII class all day? Go full time helping people find their relatives' stories - and fix their histories? Where are THEY leading me with this?

###

This morning, a colleague and friend asked how, on the last day of regular classes, I liked my first year at Waite. I couldn’t help but to smile.

I thought I came over for my reasons. And on some level, I did. But I think I came over for THEIR reasons, too. I don't think I could do it anywhere but here.

###

We are all called to something greater than ourselves, all of us, something big that we can’t even understand sometimes. Something that excites us. Moves us. Makes us part of something. Sometimes it's hard to hear that call.

This morning, one of the greatest men I know, who was a student my first couple years at Rogers, was sworn in as a Toledo Firefighter. He’s always had a passion for what they do, and the brotherhood of the firehouse, and the call to serve and save.

I got to see him for only a couple minutes before I had to get back to school. I told him the only thing I could think of. That THEY could think of.

You’re doing what you’re meant to do.