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.

Occupational hazards

written by Joe

I am a history teacher. This comes with a few occupational hazards. I am a cancer patient. This, too, comes with some hazards, only one of these being actual cancer, and some of them magnifying the hazards of being a historian.

In the past eight days, my life has been a whirlwind of travel, gathering research information, finding a couple bombshells (literal and metaphoric), getting lost in the past, traveling, planning, teaching, treatment, and traveling. What there hasn’t been time to do is to think. To process.

History, I tell my students on the first day of class, is the recording and interpretation of past human events. So many words there… Recording. Interpretation. Past. Human. Events. And like Faulkner said, the past is never dead. It isn’t even past.

In nearly every facet of my life, I have been grappling with history for the past week, and to some degree, my place in it. There is much that I found in Washington that I can talk about freely on social media, and some that I cannot. There is some that I should discuss, and some that I should not. So you’ll have to forgive me for being a little vague as I get into this.

Paul Theophane Boyle is my superhero. He is my Captain America. He has been for more than half of my life. I do pretty well at recording the past human events of which he was a part, but it’s exceptionally hard for me to interpret them, because he is, and will always be, larger than life to me. Interpreting the events of his life, no matter how hard I try to do otherwise, is always done through icon-tinted glasses. I want him to be a hero.

As fate would have it, the more I learn about him, the more this seems to actually be the case. I remember being quite skeptical of Uncle Bill Boyle’s story of Paul’s death. It seemed too perfect. But then I found the AARs. And the Monan and Gravelyn memoirs. And then I got to communicate with Stan Bielen. Last week, I found the maps. Most importantly, I found that faded blue document awarding Paul the Combat Infantryman Badge that he never got; a CIB that would have automatically become a Bronze Star after the war.

As I sat at the National Archives a week ago this morning, I had tears in my eyes and I my hands were shaking. I mean, this was pretty much it, right? This was the proof, incontrovertible proof that Paul wasn’t just a hero in my eyes, that he was (or, if the madness of combat hadn’t fouled up the paperwork before he died, should have been) a bona fide hero, with the paperwork and medals to prove it.

So there it is. My relative’s a hero. Story ends. Except that it doesn’t.

In that paperwork, and in all of the memoirs I have read,there are some names that stand out time and again as people who didn’t perform very well in combat. Men who failed at missions they had advance notice would fail, and men died. Including Paul. What I’m struggling with now is this: As I put together a lesson plan about the lessons of the hedgerows, do I name names? And the reason I struggle with this? Capt. X – mentioned by name quite a bit –is probably someone else’s treasured, storied uncle. It’s possible that Col. Y– mentioned by name for incompetence – is the family legend that got some relative through the darkest days of his life.

I’m struggling with this issue mightily. I think about it when I wake up in the middle of the night.

Which parts of the past are best left in the past?

Is it possible to be interpret past events in such a way that you maintain each person’s dignity?

What do we do when our interpretations of past human events have the power to wound?

Is it our duty to be honest? Or to maintain honor? Can we do both?

My heart aches with this stuff. I am probably more sensitive to these than I have been in a long while. I remember when Samantha and I were  at the British cemetery in Bayeux, and there were German soldiers buried there; 6^th Fallschirmjager – same unit Paul was fighting when he died, and I remember saying to her, one of these could be the guy who pulled the trigger – and I can’t even be mad. If I can’t push injury on those guys, how can I even consider pushing injury on the guys on our side who made brutally bad decisions?

Where do we get that? Where does it come from?

I suppose all of these are questions we all have to ask ourselves at some point or another. They’re questions I have really tried to focus on this week, which has been a week where it’s difficult for me to focus on much of anything. I’m especially having a terrible time trying to focus on the work I need to do on Paul as I try to decide how to do this in a mindful way. And I think this comes back to the occupational hazards of being a cancer patient. Remember learning about Erikson’s psychosocial stages in your undergrad psych courses? Identity vs. Confusion? Generativity vs. stagnation? Integrity vs. despair?

I sat in a colleague’s class this week while her student teacher taught her psych class, and all of the Erikson stuff came back to me, and I had the horrifying dawning that I’m going through those last two stages concurrently, if that’s even possible – trying to define my role in my work at the same time I’m trying to look back on it. It’s like trying to blow bubbles in a wind tunnel.

Today, my scans came back with no change. I’ll throw some bravado on my left arm like a shield, and deflect things a little bit longer.  I’ll work on Paul’s story, because keeping him alive is the legacy I guess I’m trying to build. I need him to be a hero for me, but more importantly, I need him to be a hero AFTER me. What would Cap do? How would Steve Rogers solve this?

I hate to be the guy who writes “I could go on…” as a conclusion, but it’s midnight, and I’m exhausted after treatment and travel today. I sure wish I had the answers tonight.


-----


If you have not had a chance to see Joe's plans of running 50 miles to raise funds for Dr. Rini's research, you can fin it here.

Every second counts; 50 mile race to beat kidney cancer

This June, I will finish the Mohican 50-mile endurance run/hike in the hills of central Ohio. Why? To prove something to myself, certainly. But I want to make it for something else, too.

First, I want it to again raise awareness that diagnosis doesn’t mean death – and that every minute counts in our lives. But second, I want to do it to raise money for the Cleveland Clinic’s kidney cancer research. The easy thing to do would be to ask for dollar donations. But that wouldn’t be enough fun. What’s fun is making a game of it for you, and an added motivation for me.
So here’s the plan: Fifty miles is a LONG way. If you started in my mom and dad’s in Grand Rapids… you’d run to the Indiana border, and keep going two miles. If you started in my driveway in BG it would put you at Cedar Point. If you went straight up, you’d only be 12 miles from space. SPACE!!!
Now, let’s establish that I am really SLOW. Erosion moves faster than me. It took me 6 hours, 36 minutes to finish my marathon, which was a mere 26.2 miles. So, let’s do some math…
6 hours 36 minutes = 396 minutes… 396 min / 26.2 miles = 15.2 minutes/mile
Let’s be honest: I’m not going to be anywhere near that “fast” for a race that is hilly, on single-path trail, twice as long, and probably hot, possibly rainy. Not even close. As I pulled up results from last year’s 50-miler, the last guy in across the finish line took a smidge over 19 hours. Let’s go to the math!
19 hours, ten minutes = 1,140 minutes = 21.6 minutes / mile. 

I don’t think I will be THAT slow. But I don’t know how much faster I can be. I DO know that I’ll need a good kick in the butt to keep going when every part of my body will be telling me to quit.

So let’s make it interesting. I need a speed goal to shoot for, and you all want to help beat kidney cancer.

How much will you pledge, per minute, to motivate me to get under 1,140 minutes? Let’s say that the fastest I can go is my marathon pace, 15.2 min/mile. That would bring me in at 760 minutes or 380 minutes under the 1,140 limit. So if you bet a dollar a minute, you’d be on the hook for $380 (380 x $1.00). If you bet 50 cents a minute, $190 (380 x $ .50=$190). A quarter would d cost you $95 (380 x .25= $95)– and that’s if I am the fastest I’ve been. So you’ll likely be on the hook for WAY less than that. I don’t care if you bet a dime, nickel, penny, whatever. What I need is some motivation while I’m out there, and if I can convince myself when my calf is cramping that I need to keep going to raise some coin for a cure, it’ll get me through the lulls. Every minute will truly count.  The race is just under three months away, and I need some motivation to get out and train, too!

This is how it works:
Click here to fill out the online form so we can gather pledges. 

After the race, we’ll calculate how much you’re in for and remind you to fulfill your pledge. Your actual donation will NOT come through me, but will go directly through the secure Cleveland Clinic website. The Clinic has set up a fundraising page for this effort.

Miracle Drug: One Year On

"Of science and the human heart
There is no limit
There is no failure here sweetheart
Just when you quit"
- U2, "Miracle Drug" (2004)

One year ago today, a very nervous-seeming nurse set an IV line into my left arm, and I was infused with ipilumimab and nivolumab for the first time. In the year since Valentine’s Day 2014, so much has changed in many ways, but so little has changed in others.

When I sat down in that infusion room at the corner of the Taussig building, my muscles were still sore from the inaugural Winter Soldier run. That run anticipated the moment I’d sit in that chair and let the two-drug combo course through my body. More accurately, it anticipated the moments that would come after; a menu of possible side effects ranging from annoying to painful to frightening. No matter how much Dr. Rini and Laura informed me – and believe me, they DID inform me! – I don’t know if anything could have prepared me for the changes the drug would bring to me psychologically and physiologically.

The easy stuff to describe is the physiological stuff. It is sort of funny that only now, in the rear view mirror, do I truly appreciate exactly how bad the first four months on the treatment were. Those first four months, I was on the combination of two drugs. I wish I could provide you with a play-by-play of how things unfolded during that time, but a lot of it is(thankfully) lost to me – chalk that up to the ‘memory loss’ side effect. WhatI have, instead of fully-formed memories from last winter and spring, are vignettes.

###

It is the day after treatment. I meet Bernie Kosar. Oddly, I will meet him three times this year. It is a couple days later. There is a ton of snow on the ground. I go for a 5k run, because this is easy. No problem. I have dodged the side effects.

It is early March, and my sister and her family are in for my dad’s birthday. I’d just had my second treatment. They warned me that if side effects presented, I’d need to get in touch with Doc & Laura immediately to get on Prednisone. I am face-down and moaning on the rug in mom and dad’s living room for hours, and my head is splitting open, and there is a pain behind my eyes as if someone is trying to drill their way out from my brain. That night, I go on 60 mg of Prednisone. I don’t sleep a full night for a week. I stay on prednisone. I am still on prednisone.

It is later in March. The Prednisone is a blessing and a curse. Once it kicks in every day, it takes away the swelling behind my eyes,in my head, and in my spinal cord. My mornings are foggy. I am edgy and manic sometimes. I don’t sleep well. But the real blessing is that Prednisone has stripped away some of my filters. For too long in life, I have been a nice guy who goes along with whatever to avoid conflict. I am pushed a little too far,and I start calling things out as what they are. When the meds kick in, I return to passivity, and try to bring peace back. But the genie is out of the bottle in my head, and I know I need to make changes in my life, and stand up for something for once.

Winter drags into what should be Spring. It snows this April. The pain behind my eyes is getting worse,and I get dizzy near the point of passing out one night on a walk downtown. I haven’t run in two months now, my longest layoff in three years. I try a couple times and it hurts. I have appointments with neurologists, looking at swelling in my brain. I have appointments with ophthalmologists, neuro ophthalmologists.They peer inside my eyes, a window to the soul, and they find my optic nerves inflamed and angry, the cause of my blurred vision and dizziness and near faints.I drive to one of these appointments having to take breaks every 20 minutes because I am afraid of passing out behind the wheel. The next time, I have the good sense to have one of my best friends from work drive. I only realize now,in retrospect, exactly how scary it was for a month or so.

Spring is coming after a long winter, and it is May. They have withheld treatment for a while because of the side effects. We go to weddings, family functions, parties, and I remember little. My profession is driving me to the edge of madness, maybe even over the edge. Things I could deal with healthy, I simply cannot deal with sick. I get infused for the first time in a long time. Doc and I agree, we want to get all four doses of the double-drug cocktail in before the window closes. Situations at work spiral out of control. I get treated again before MemorialDay. Sam and I travel to Youngstown to remember Joey Vanasky, in what is probably the last Memorial Day observance from his boyhood church. I cry, and I cry more. It feels like everything is ending – graduation of some of my favorite kids; knowing I am leaving Rogers; friends moving away. A friend whois full of life dies in an accident. On the outside, I’m more or less maintaining a façade of normalcy, inside I am wondering if I can do this treatment for much longer. It is June, and I have my last treatment

And

Suddenly

The

Sun

Starts

To

Shine

Again.

They withdraw the ipilumimab, and maintain me only on nivolumab. The optic nerve swelling and light sensitivity goes away. The headaches begin to abate. Memory loss remains an issue; concentration remains a serious issue; Prednisone remains high, and I have incredible bursts of energy.One day I swim two miles, then go for a six mile run. Another day I mow five lawns before lunch, because I feel so good I just can’t stop. I herniate three disks in my back. I go up to the cottage and swim across the lake, but I can’t pick up my kids. That afternoon, I get a phone call – I’m going to Waite High School in the fall! I bid some professional and personal friends teary goodbyes, and despair that I’ll never see them again. I make new friends. A new school year starts, and purple and gold become my go-to colors. I start taking pictures of my new, very old school. I fall in love with the school and community, quickly, madly, deeply. Imake more new friends, and I laugh at lunch every single day. I go home happy every night. We have birthdays, anniversaries, holidays, and activities with the kids. Oh! Do we have activities with the kids! We deal with the fact that our little girl isn’t so little, and we adjust. I look at Katie sometimes and wonder how I got so lucky. We look at each other and wonder how we got old. I silently thank God that I’m getting older.

I go to Cleveland every two weeks for infusions of nivolumab. They run into a mostly-pleasant, if budget-draining, pattern: I bail out of school at the beginning of 4^th hour. I hop on 280 to the turnpike. I arrive in the garage at 9600 Euclid in Cleveland just in time.  They take my blood, I pee in a cup, I have a physical, I get an IV, we wait on the drug to get mixed, and they start the drip. About 30 minutes in, I get a terrible headache. About 15 minutes from the end, I feel like someone’s sitting on my chest. I pay for my parking. It’s rush hour. I inch my way toward home, and stop at E. 79^th to get a pork shoulder sandwich at Hot Sauce Williams. I’m not only the sole white dude in the place, I’m the sole white dude in a 1600-meter radius most nights. I think about segregation. I drive home. I top off Ingrid’s tank on the ‘Pike.Most nights, I pat her on the dashboard, and thank her for another job well done. If I’m lucky, Barry or Jaz are working at DQ, and I get that small cone with sprinkles at the end of the rainbow. I am tired. I drag ass the next day at work. I sleep a bunch. And by Monday, I’m ready to rock it.

It is winter again. I have been building my miles again after getting PT on my back. I’m swimming. I’m running. I am stronger again. I am becoming leaner again after nearly a year on prednisone. I decide to run and hike a 50-miler in June to raise money for Dr. Rini’s research. My scans are inconclusive for effectiveness of the drug; many other patients are seeing their disease recede into memory. I am jealous of them. I am on parish retreat team. We meet monthly, and we laugh, and cry, and try to put together a meaningful program. The Holy Spirit hijacks that program, and it ends up being absolutely magical. Some 50 people pray over me, and I feel like it may be the Vita-Rays that activate the Super Soldier Serum. My training picks up again,and I train with purpose.

It is the one-year anniversary of the Winter SoldierMarathon, and it’s the beginning of the biggest winter storm of the year. JD and Amy and I trudge out into a driving wind, and the spirit is on the wind,blowing ice pellets into our faces. I thank God that I’m able to get out and run, even if I'm slower than glaciation. I do smart stuff. I do stupid stuff. Sometimes I focus. Sometimes. I drift off, and can barely remember where I am. In the first two weeks of February, I lose my car at work… twice. I start looking to the future again. I think about those scans coming up in a month, and with faith and wonder, allow myself to dream that the tumors will retreat. I work hard to be more like Captain America, in body, spirit, and constitution. I thank God for all of you. For your prayers. For your posts. For your thoughts. I hope that I am worthy of them.

November Rain

“Nothing lasts forever. Even cold November rain.”

- W.A. Rose, esq.

Our family has an unkind history with the month of November. Ever since about 2005, it seems November has brought with it not just the time change, not just the cold rains, and the frost, but a gloom upon this house. Some years it’s been financial catastrophe, other years emotional distress, sometimes illness. I say that just to put in perspective where I think I’m going with this, because I think we’re in a place right now where it’s hard to see the Spring ahead.

Last Thursday, I had CT scans at Cleveland Clinic. There are so many things I appreciate about my oncologist, not least of which is that he never leaves me hanging on my scans. Good, bad, indifferent, before he even says “How ya doin’?”, he gives it to me straight – knowing full well that no cancer patient even has heard anything before you give them the results.

As most of you know, the results were static. My metastatic kidney cancer tumors in the lungs neither measurably grew, nor measurably shrank. I know, in deep parts of my heart and brain, that it’s fine news from one perspective – the disease is not progressing at a rapid rate. And that’s great. I know it’s great.

But it’s November.

In February, when I found out I had made it onto this nivolumab trial, I was sure that the stars had aligned, God had smiled, LeBron had come back, Dr. Smooth had crushed a walk-off in Game 7, and Haden had returned an interception with .06 on the clock for a Lombardi Trophy. It had all come together! At long last, it had all come together! I knew deep in my soul that this was it; this was the cure! Where surgery, placebo votrient, and Interleukin-2 had failed, THIS trial was going to succeed. In Campbell’s monomyth, we were passing through apotheosis and toward the ultimate boon.  And after scans in July showed measurable shrinkage of three of the four tumors, I was more sure than ever. Last week was the first time I have walked into scans without the paralyzing fear that normally accompanies these trips.

And that’s probably why the news was such a blow. Long and short of it is this: A number of the other people in the cohort at the Clinic had significant shrinkage by now. A sizable minority had their disease progress. My doctor believes that if it was going to just out-and-out WORK, it would have worked by now.  Nivolumab, as it turns out, most likely IS the miracle drug they’ve been looking for. Maybe a few years down the road, they’ll figure out exactly why it’s working for many, and not working for others. I pray with all my heart that they figure that out in time for me. But I’m also fully, painfully aware that they might not. Not to get excessively morbid, but this is the fourth Thanksgiving and Christmas season that I’ve had to wonder if it’s my last. As a side note here, to those greeting card writers suggesting we ‘live every day as if it’s our last,’ that’s pretty exhausting!

I still know, deep in my soul, that things are going to workout - hopefully, in the way that I want! I feel fine - my worst tangible physical problem right now is a metatarsal I hurt running the other night. When I look hard, I can find the green shoots of the future. One of them was yesterday’s levy vote. Another, I hope to be able to share a little later this week. Hope isn’t lost. It’s never lost. Just sometimes a little hard to see through the November rain.