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.

Treatment number 2

Treatment number 2 was so uneventful I forgot to write about it. Joe taught in the morning and I picked him up at 10:30 so we could be to his first appointment at 1:00. The Joe "fresh out of the classroom" is much different than the Joe "with a 20-30 drive after the classroom". Not bad or good really just that he needs time to change from urban school teacher-history guru-crime fighter to husband-father-runner-cancer fighter and it is best if that is done on his own, in his head, with no noise, and on a good day, a nap.

While in room 47 hooked up to the IV meds, we had visits from Cleveland Clinic PR people (again), and cousin Marybeth, and childhood friend Jessie.

Unlike the first treatment, Joe does not need to be seen or have blood work each week so we will not be back to the Clinic until March 28.