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.


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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.

Father's Day video

This is the video the Cleveland Clinic release around Father's Day. It is similar to the Everyday Health video. The story accompanying the video can be found here.

#VeloSano for a "Swift Cure"

This number is kind of shocking, but this is what you get with five of the most dysfunctional Congresses in American history. Ten years ago, more than 30% of NIH grants were funded. As your representatives have slashed funding and bought into little gimmicks like the 'sequester,' that number is down to SEVEN percent today. So - just at the moment science is starting to crack some important codes in outsmarting cancer, the legislature is eviscerating the funding. The difference has to come from somewhere. Has to. So across the country, you're seeing research hospitals and universities get creative in how they get this message across to the philanthropic community as they attempt to bridge this widening gap.

On 19-20 July, Northeast Ohio will experience an event that's both athletically and socially impressive. VeloSano (Latin for "Swift Cure") is a first-year event to raise big money for cancer research at Cleveland Clinic through a variety of endurance cycling events. Moreover, it's a chance to bring the community together in support and awareness of the cancer research being done - and the people benefitting from it. 

My doctor, Brian Rini, is wrapped up in every single facet of this: He's a top-flight researcher, is an incredible one-on-one doc, and he's riding the 100-mile race on 19 July (you can see his VeloSano page here: http://ccf.convio.net/site/TR?fr_id=1490&pg=personal&px=2630741). Ellie and I have ended up getting folded into this, too. Clinic asked me a couple weeks ago if I'd record a few words of encouragement they're going to play before the race starts, since Dr. Rini's one of the riders on the CCF team. After that, they asked if Ellie and I would be willing to be part of a video that's going to show the riders what they're racing for. I love the theme of this video. Love, love, love, love it ... and I don't want to give it away. But let's just say that people like Ellie - whose loved ones (or at least, liked ones, some days) are featured as the REAL beneficiaries of the clinical trial research being done on those of us guinea pigging away. Athena Meriscko - a survivor who is clearly more talented on two wheels than I am - is riding in the race, and you can visit her VeloSano page here (http://ccf.convio.net/site/TR/VeloSano/General?px=2591681&pg=personal&fr_id=1490). PS, for my BG News friends who find that name familiar, it's Jim's sister! 

I'm not writing this to convince you to donate money. I'm writing it, because if you're in NE Ohio that weekend, be part of the team. Post pics of the bikers on social media with #VeloSano, or tag the event's Twitter @bikeVeloSano if you see cyclists around town. Build some buzz, make it trend! Cheer these cyclists on as they do anywhere from 26 to 270 miles in their races! Be aware of the event. Tell your kids what it's about. Get as excited about a sport we know nothing about as you will be on Tuesday! Make VeloSano a Cleveland EVENT, not just a fundraiser. Those of us who have grown up Cleveland athletics fans have gotten excited over some pretty stupid, depressing s*** over the years (et. al., Tim Couch, Alex Cole, DeSagana Diop). Why not get excited about something that has incredible, local athletes who are fighting to bring something bigger than the Lombardi Trophy to Cleveland? 

Everyday Health marathon video

Cleveland Clinic has a camera crew at the marathon and later Joe'c classroom and his first treatment. This is the package that was put together.




Joe has the last of the 4 two drug dose June 4. He has experienced the side effects that have become regular- headache, neck pain, general aches and fatigue. The next schedule appointment at the Cleveland Clinic is June 26 for CT scans and the maintenance part of the study that is just one of the drugs has received before.  
Him and the kids are excited about summer break and days at the pool, sleeping in, ball games, trip to the lake and other adventures.