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.

Dream it all up again

I’ve tried really hard tonight to come up with a great literary device to frame this update. But my mind is all over the place, my health has been all over the place, and my spirit has been all over the place.Let’s start with the easy stuff… cancer.

PHYSICAL HEALTH: Just days after the last update I wrote for the health blog, my side effects really, really kicked in. It began with some cold-like symptoms the week of 9 March, and then on the weekend of 14 March, it got RAW. I had a headache that pierced from temple-to-temple, and behind the eyes. I had tremendous joint pain, and aches up and down my spine from the base of my skull to the pelvis. It was really, really unpleasant.

    The docs put me on 60 mg of Prednisone to deal with what they rightly believed was inflammation of the brain and central nervous system.Transitioning onto the Prednisone was no joke. My emotions were all over the place; well, maybe not ALL over the place. Most of the time they were between“WHITE HOT RAGE” and “IRRITABLE LIKE SOUP NAZI.” As Vincent Vega would have described it, I was a “race car in the red,” and you do NOT want to keep a race car in the red, Jules.

    The Prednisone did its job, and the side effects really decreased, tothe point where I ran 15 miles in one week for the first time since the marathon. Throughout that time, I had some weird side effects pop up, then pop back. A lot of them had to do with my vision, going blurry, spinning, etc. I ended up in with neurologists, neuro-opthamologists, and on, and on.  Mixed in with that, my beloved ’96 Volvo, Ingrid, had some serious front end work done. Sometimes the vision spinning was bad enough I got nauseous, and then dealt with that. But,inevitably, they had to wean me off the Pred to get back on the treatment. The phasing down was a real treat; and then on 2 May I had infusion 3. I have been on the very low level of Pred since then, and it hasn’t been a ton of fun. Lots of headaches, some vision problems, and such. This Friday, I will (pretty pretty please) have infusion4, and then we’ll be out of the induction phase and into the maintenance phase of this experiment; supposedly, that’s when things will get a lot better in the side effects department, insh’Allah.

    The good news from the last check-up at Cleveland was that one of the tumors appeared to be smaller. They don’t do that on their own. And that’s the one piece of news I am holding onto for dear life right now.

MENTAL/SPIRITUAL HEALTH: I've found myself 'stuck in a moment, and I can't get out of it' at work. The state teacher evaluation system is an absolute nightmare, and if I was younger and healthier, I really think I’d be seriously considering a different occupation. As it has been said around the state, “I love teaching, but I hate my job.” The relentless focus on numbers means we’re focusing almost exclusively on things that can be counted – and smarter people than I have commented intelligently on what you get when you do that.

    With where I’m at in life, I think a lot about legacy. You really can’t help it; once they talk to you about Stage IV cancer, it’s a bell that can’t be un-rung. No matter how positive you choose to be, when push comes to shove, if they even hint that death is a possibility, you really do start thinking about the legacy you’re going to leave behind, and what you can do to influence that.

    This has brought me to a career crossroads in a lot of ways. I know that teaching is one thing I’m pretty good at, but to what ends? Getting kids to pass a test that seems increasingly meaningless? Or to actually equip them with a toolbox with which they can seize life by the throat? Next year I’m reinventing a lot of what I do to try to address the most fundamental things my kids need to learn: Break big projects into small tasks. Decisions have consequences. Get off Reynolds Road and see the world. Figure out who you are, and where you come from. Develop a sense of place. Honor your predecessors. You get out of things what you put into things. Maybe those lessons will match up with the state standards,maybe they won’t.

    All of these legacy decisions have been made even more emotional for me over the past week as we prepare to say goodbye to my favorite senior class since 2008. One of the greatest things about being a teacher is that it’s a cyclical job. Every year has a cycle, every year has a rhythm. The two biggest parts of that are saying hello, and saying goodbye. Some years it’s easy to say goodbye. REALLY easy.  Other times, it’s rather difficult.

    This year is one of the difficult years. This year’s seniors were freshmen when I got sick. With no notable exceptions, they were the angels on my shoulder every step of the way; in my corner when I went off to IL-2 treatment in '12,on my side through the watchful waiting of '13, and they’ve had my back throughout the treatment this year.  They’re also a group I’ve had in class more times than any other group. Five of the seniorsI’ve had in class for four courses. Another 12 I’ve had three times.  Ten of them I had twice. All that means is that I’ve had a chance to get to know them, as kids, and now as young adults. Especially over the last semester, I’ve gotten to know a handful of the core group better as writers, and editors, as they clean up their research papers, and learned some more of their backstory, some more of their work ethic. I’m really going to miss being part of their great successes, their personal tragedies, their near-misses, and their lucky moments.

    All of the senior week and graduation stuff has had me really reflecting on what I’m *doing*, what my legacy is at Rogers, and what my professional future is. Have I done what I'm gonna do? I think all of this would be a lot easier if I was 100 percent sure I was going to be,you know, alive, five or ten years out. (That statement, of course, is for me and every other human who ever lived…)

    I’ve thought since mid-March about a speech Bono threw out there, off the cuff, on the last show of the Lovetown tour in ’89 – the famous Point Depot concert in Dublin. He says, “I was explaining the other night, this is just the end of something for U2, and that’s why we’re playing these concerts, and throwing a party for ourselves, and you. It’s no big deal, it’s just that wehave to go away and… just dream it all up again.” Do I have another ‘next act’ left? Or if I figure out a next act, do I forsake what legacy I have created?  I suppose none of usreally know the answer to that question, so we just muddle through as best we can. This is the gift and the curse of a serious illness; you gain such a respect and awe for life, but you can’t just shove the thoughts of mortality away.

A simple questions

from Joe's FB 3/11/14

There are a lot of parts of the cancer experience that I think most people can empathetically extend themselves to understand: Insurance company fights. The nervousness the week before scans. I think people can even instinctively understand the internal struggle of facing one’s own mortality. But last night I got caught by a sucker punch that I didn’t see coming, and the nonchalance of it has had me reeling for the past 18 hours or so.



Last night, I went into the boys’ room, and all three of us independently read silently for a while – Mark, a Star Wars book; Joey, a Wimpy Kid book; me, another book shattering the legend of Douglas MacArthur. Mark finished his reading first, and in a chipper voice, completely unconcerned, said:



“Dad? Are you going to be alive when I’m ten?”



I don’t think he meant it the way I perceived it. Frankly, I don’t think he completely understands what we’re fighting, certainly not in the way Ellie or Joey understand it. It caught me completely off balance. I answered,



“I sure hope so, buddy.”



“Are you going to be alive when I’m 16?”



“I plan on it.”



“Are you going to be alive when I get married?”



“I sure hope I am there for that, pal.”



I have tried very hard to be positive throughout all of this, and I still believe deeply that I *can* win. There are times I’m cocky enough to know that I’m going to win. I also know full well that NONE of us can promise that we’re going to be around tomorrow, much less 20 years into the future. But his questions last night absolutely cut to the core of my greatest fears.



What if I’m NOT there when they turn 16?



What if I’m NOT there when they get married?



All of these questions first crossed my mind three years ago at the end of this month, on the second floor of Wood County Hospital, as a doctor told me I had a large tumor, that was almost certainly cancerous, and was too dangerous to be operated upon locally. At first, my concern was completely self-centered. *I* didn’t want to miss being at all of these things. Later, my concern drifted to them – kids, both natural and extended, growing up without a dad. The sorrow that would be in the corner of every joyful moment they’d have. The sometimes unspoken “I wish Dad was here to…” Maybe I put too much stock in fatherhood, there are plenty of great mom-led families I know. Maybe it’s an inflated sense of self-importance, and they’ll be just fine without a dad.



At this point in this journey, I think that’s the only thing I’m truly scared of. Actual dying? I suppose that’s the easy part. It’s imagining the twinge of sadness that it will bring to their lives that really shakes me.