Running For Victory!

Written and posted on Joe's FB Sept 29.
--
 I had no idea that the Sentinel story regarding my running journey was going to run today, much less that it was going to get the play it got. I had planned on posting this note today anyway, but I thought, what the hell, let's ride the publicity.

 This Nov. 9, I'm going to do something I never thought I'd do again: Run the Churchill Half Marathon. It's the same race I ran the week before I got diagnosed with kidney cancer. Last time, I ran it for myself. This time, I'm running for something bigger.

 The Victory Center is a place that's helped me, and countless thousands of other cancer patients, deal with the physical, and especially, the mental battles that are a part of our larger war. Services like counseling, oncology massage, reiki, and countless other therapies have given people the strength to carry on. Over the past few weeks, a few more friends and relatives have gotten cancer diagnoses, and I have felt powerless to help, except to run, and pray. This is a way I feel I can help the people who help them.

TVC is completely funded through charitable giving; no tax dollars, no insurance contribution. And the services they provide are completely free - critical, because as we know too well, money starts flying out the window when you get a diagnosis, no matter how good your insurance is.

 So the easy way for me to fundraise would be to simply note that if 100 friends donate $10, I could reach my goal of raising $1000 for TVC. But let's be honest, that wouldn't be very Boyle. So instead, I'm asking you to choose a sponsorship level based on everything that makes it absurd that I'm running this race. The following sponsorships are available:

 - one $200 "Where the Hell Is My Kidney?" sponsorship
 - one $150 "Massive Left Leg Blood Clot" sponsorship
 - one $100 "Enormous, Suspicious, and Embarassing Testicular Mass" sponsorship
 - one $50 "Hey, That Was My Adrenal Gland!" sponsorship
 - seven $40 "(Let's Hope They Stay) Itty Bitty Lung Tumor" sponsorships
 - eleven $20 "Removed Lymph Node" sponsorships

 Of course, any amount you choose to sponsor is awesome! But I can guarantee you a fine little certificate that YOU and ONLY YOU, for instance, sponsored a giant, surgically-removed nut growth. It will, of course, be suitable for framing. Hurry now and sponsor before someone else claims one of my lung tumors! Lymph nodes may go flying off the shelves! I will post on Facebook every time a body part flies off the board!

 To donate, simply write a check to "The Victory Center," and mail it to me at 943 Fairview, BG OH, 43402. When we reach the goal, we'll compile all of the checks and submit them together.

 Thank you all for your support, whether you can contribute to this, or not! Your positive thoughts, prayers, and comments really do help all of us here get through this thing.

 --

 Since this was posted Sunday only lung tumor and a few lymph nodes sponsorships remain. Also sponsorships for "Scary sleepless nights" for $500 and "Interleukin2-Fueled-Hallucinations" for $200 were created by generious friends and family. -Katie

Joe Boyle on the run

The Sentinel-Tribune ran a nice story about Joe Saturday Sept. 28. You can find it here.

Witness

I just want to start out by giving all the blame, and the glory, to God for what I'm about to write, because I spent 12 minutes asking Him what to do, and this is what happened...

###

One of the best things about being a middle aged runner in Bowling Green is that the campus and the student neighborhoods are nice, well-lit, well-traveled places to run at night, and I am really, really grateful for that. But one of the worst things about being a middle aged runner 

One of the worst things about being a middle aged runner in Bowling Green is that it is filled with impossibly fit and skinny college students. And some nights as I have huffed and puffed through a run, or stepped down to a walk, I have seen their beery eyes peering at me and, on occasion, have heard them mock me. It doesn't make me mad; it is a little embarrassing. And I always think, man, I was exactly the same way when I was in college, and if they knew what God has brought me through, they'd probably be cool with it and we'd all be friends. 

So tonight, I rounded the corner of Ridge and Main (my one mile mark), and a girl comes flying off the porch of the party house there, a beautiful little Arts-and-Crafts that is way too wonderful a home to be student ghetto. Anyway, this girls starts running alongside me and slurs out "Come have a drink with us!!" I begged off three times, and told her, I only have one kidney, I'm in the middle of a workout, how about some other time. By Ridge Elementary School, she'd had enough, and walked back to the house.

And I kept running.

And I couldn't get out of my head. Should I have stopped? Was this a chance to tell my story? Was it a chance to - and I really, really hate using evangelical terms - but was it a chance to witness? So I kept running up Ridge, past Sorority Row, past Mac, past Oak Grove Cemetery, and up to Student Health Services, and Fr. Mychal Judge's prayer was in my head: "Lord, take me where you want me to be, tell me what you want me to say, and keep me out of your way!" I doubled back on Ridge, and headed back toward that house, still unsure if I was going to stop. Just take me where you want me to be...

I found myself charging up their steps like a bull moose, and yelled out, "You still got that drink?!" I'd like to think that for just a minute, I saw a glint of fear in their eyes... 

The girl who had come out to run with me says, "Ohmygod, you gotta come out and run with me for a Vine!!!" and I said, "Fine, but you gotta promise to listen to my story!" So I go back to the corner of Main and Ridge, run back by the house, she runs back out next to me, to do a semi-accurate historical interpretation of her initial run with me, fifteen minutes or so earlier. I walk into this house party, which reminded me of a Joe Peiffer Columbia Courts party, and one of these kids goes to get me a bottle of water. The girl who ran with me says, "Tell your stoooorreeee..." So I tell this girl about the run, the pain (left out the 'no pooping' part), the surgery, the DVT, and being told I'd never run. And I told her, that's why I run, and it's only through God's help that I can run and deal with cancer. She gets tears (I'll put that on the Zimas, or whatever the hell it is college girls drink today), and asks me to tell the story to everyone else. So now, I'm on the front porch of this place, with God knows how many kids, telling me story. The frat boys are high fiving me. I finish my water, make a three pointer into the recycle bin, tell them I gotta go, and then these three dudes with cigarettes...

Hey God? Remember when I said "Tell me what you want me to say?"

Well, "Don't f*ckin' smoke" is what came out of my mouth. And then I ran down the porch and around the corner toward home. Celeste, tell Joe that the first thing I thought of was the night in college that he, Aaron, Riccardi and I met that bum who was our train-jumping tutor. 

So, I think I witnessed tonight. And I'm pretty sure it would be wholly unacceptable by most religious folk, and I'm pretty much OK with that. I wrote them a letter that I'm going to leave on their doorstep tomorrow with a case water. Hopefully it will be a little more eloquent! 

Magical

What follows is a blog post I wrote on the plane on the way home from Disney two weeks ago. I kept putting off posting it because I wasn't sure how to end it. I'm still not sure how to end it. But I wanted to get it out there...

###

During exam week, I had a great conversation with my friends Mary and Meg McVey. The topic was from their daughter's experience at Chewonki Semester School - the idea of what is natural, and what is not.

For any of us who enjoyed a geography class or two in college, the topic isn't that foreign; "natural" refers to only things that have been unadulterated by man - so a Christmas tree farm is really in now way natural, though it consists of what would obviously be recognized as "nature."

The greater idea behind making such distinctions is that the natural is what is real, and that which is sculpted by man is something less than that. On so many levels, my soul agrees with this. We are so removed in today's society from the natural that we have a hard time figuring out what is real and what is not, even in our own heads and hearts.

The past week, we've been at the Disney resorts and parks. It's hard to imagine a less natural place on earth! Every rock was put in place for a reason, and probably conceals some piece of infrastructure! One of the weirdest things to me is that our cabin was located in a swamp- literally, surrounded on three sides by water that rose with the rain, and drained throw the day. We never saw a snake. Not one. I don't know how Disney makes that happen, but it's completely unnatural (and believe me, I am NOT complaining about that one!).

At the Magic Kingdom, the artifice is the idealized Main Street that never was; the optical illusion that makes Cinderella's castle appear at least twice as tall as its 180 feet; the Frontierland of 1950s dreaming. At Epcot, the gleam and chrome and sleek lines of the future plazas; and the international showcase that highlights only the beautiful parts of beautiful nations. At Hollywood Studios, the entire park is organized around the idea of showing you just how the veneer is accomplished!

All of this should conspire to make it a fake experience. It seems like it should feel bad, the way you feel bad after eating McDonald's.

Instead, I've never felt so good.

The past two years gave our family more reality and more natural occurrences than anyone would care to experience. What could possibly be more natural than a cancer without a cure? Something that all of the technology and feats of medicine that man's mind can muster, but not master? It's the very definition of "natural." Facing mortality - it is the single most natural experience all of us will have as a shared experience!

Sometimes you can deal with it well; and it's not you dealing with alone, but in the love shared with others that some of us choose to call an experience of God. Other times you don't deal with it as well as you'd like. While there are moments of it that are funNY sometimes, I don't know that you'd call any of it "fun."

A few years ago, I don't think I would have appreciated the Disney experience nearly as much as I did now. Too fake! Not real enough! But what Disney provides, I have finally come to realize, is in no way intended to be real. It's the MAGIC kingdom for a reason! The laws of nature aren't supposed to apply at Disney. Natural isn't supposed to be part of the program. I saw a lot of people in a hell of a lot worse shape than me during our trip, and all of them had ear to ear smiles. Tell me that isn't real. Tell me that isn't natural.

It's important that we are connected to the real and the natural. Perhaps few things are more important. What I have come to realize is that the 'real' in this trip comes back to the most real thing there is: Love. This trip was made possible by love - those of you who organized this thing, those of you who contributed to it, I just don't even have the words to tell you what's in my heart tonight as I look at these three zombie kids on this airplane. Throughout this trip, we found love; in Mark hugging Minnie Mouse as hard as he could. In the tears we all shed this morning as we left our cabin, a place we came to love because we knew just how special this time was. In the love Katie and I would catch in a shared glance as something special happened for the kids. What could possibly be more real, more natural than that?

###

And I guess that's what I have for an ending. I wish I could tie it up a little neater, but I can't, and my writer's block on this is pretty much a Great Wall of China. So I'm just going to say thank you again to everyone who was part of this. Re-reading it again tonight made all of that emotion real again. Thank you a thousand times over! 

On Holy Saturday

Post by Joe on FB 3/30/2013

Earlier today I shared a link to a column from Fr. Jim Martin, SJ, (http://americamagazine.org/node/128394) in which the author talked about our lives essentially being a series of Holy Saturdays. In short, few of our days have the agony of Good Friday, and few of our days have the joy of the risen Christ of Easter Sunday. So most of our days are spent in the middle, wondering, and waiting. It's a theme my parish priest has shared with us for years, but one that didn't make sense to me until this date in 2011. I didn't even realize until late this evening that Fr. Martin's message is so incredibly relevant to me on this date.

Two years ago tonight - really, at exactly the hour I am writing this, 10 p.m. - I was in the ER at Wood County Hospital, joking around with nurses after I'd had the first abdominal scan of my life. They were looking for what the doctor thought might be a burst appendix. I knew better. I knew there was nothing wrong with me.

And then, just before 11 p.m., the ER doc came in with the gravest face I'd ever seen to that point. Cutting straight to the chase, she told me that I had a very large tumor growing out of the kidney, and into the inferior vena cava; that it in all likelihood was cancerous, and that that evening, I would be admitted to a hospital for the first time in my life. That night, and the following three or four days, were the most definite Good Friday I have experienced in my life. Doubt, anguish, pain (both real and imagined), and fear, fear, and fear were at the forefront throughout the period before surgery, during surgery, in the recovery from surgery, and then in the close call with death with the DVT on May 1; and the first notation of the nodules on the lungs just before Memorial Day.

The funny thing is, Fr Mark was right again, from the very beginning of 31 March 11 when he came up to visit me at the hospital; we have to go through Good Fridays to get to our Easter Sundays. In those first few days after diagnosis, my faith (if not always my religiousity) was guided to new places. In almost every way, my experience was the cliche experience of the person who finds God 'for real' in the tough times; when they diagnose you with something that has an 80 percent chance of ending your life, I think that's pretty much de rigueur. But I don't think that's the way it went down. I think, in almost every way, God found me. Not that he ever lost me, or loses any of us, of course. But He's always there, and He's always ready to give us a hug when we need it, and a Band-Aid when we're hurt, and stroke our hair when we're crying. We get hung up on the role of God the Rule-Maker, God the Disciplinarian, God the Head of the Holy Roman Church. But what's the prayer we say all the time? What's the only role Jesus sought to emphasize? Well, we don't pray the "Our Disciplinarian"...

The image of God the Father I have found particularly interesting in these past two years. Those who are parents will know exactly what I am talking about; that no matter how much they drive you crazy, there is absolutely nothing as powerful in your life as the love you have for your children. And every time they break a rule, every time they drive you crazy by kicking each other in the nuts, at the end of the day, your love is unconditional. You want to be in dialogue with them, you cherish their successes, you take too many pictures because you're fascinated with them, you call them to hear their voices, you do what you can to make them better people, and you're there for them when they fail at that... in our best moments in the role of parent, of father, there is no self.

So at my worst moments, when I wonder 'why me?' - the moments when His only son pleaded that this cup be taken away; the moments when His only son asked why He had forsaken him - I try to remember that NO dad wants ill to befall his children. I certainly didn't want Mark to fall yesterday; I didn't want Ellie to break her arm. But just as I will do whatever I can to be there for my kids when they're hurt, so God is there for all of us. From that, comes the harder part. How many of us, as parents, have had the crying, screaming kid, writhing in agony? And how many times do we say "Calm down! Calm down! Stop crying! Listen to me! Listen! Shhhhh!" I'm pretty sure God is telling us the same thing in ALL of our Good Fridays. 

Ultimately, we're all heading for the ultimate Easter Sunday, eternal life in God, and with any luck, in the hearts of those we touched along the way. But along the way, there are tons of other Easter Sundays; unexpected or renewed friendships, finding a deep sense of community, finding a purpose in one's work, and as Katie and I found this week, the gobsmacking power of surprise from all of those places! And, by the way, as soon as we find out who all of you are, we WILL be getting in touch with you!!!!

So that's the Good Fridays and Easter Sundays. What are we supposed to do on our numerous Holy Saturdays? Fr. Jim Martin says we're supposed to wait in a sense of hope; to look "carefully for the signs of new life that are always right around the corner." This week - which I didn't even realize until late tonight was the anniversary of my first great big Good Friday - I hope I spent more than less of my past two years doing that; enjoying moments of God that I think I used to overlook. Watching the lobsters fight at Kroger. Riding bikes in an empty parking lot on a sunny day. Getting extra sprinkles on my ice cream cone. Choosing love over fear. Chasing the kids around the park. Getting good-naturedly frustrated about basketball with friends. Having a nice, long walk. And waiting hopefully.

The Art of the Possible

Joe's writing, Katie's footnotes.

Good and bad, of course, are relative terms. And when you’re dealing with cancer, that relativity takes on new shades and nuances. So today was a good day; I can see how a lot of people might find it a bad day, but we choose to interpret it in the most positive light.

The MOST positive thing this week has been being back in the care of the Cleveland Clinic. This is in no way a slam against the U of M Hospital, because the care we received, both physical and emotional, was absolutely fantastic. But there’s something about Cleveland that feels like home; between the familiar faces of Nurse L and Dr. R, right down to the furniture and the ambient music. No CNN or Fox News on the TVs here to get you worked up and anxious – everything is designed to be a warm, healing environment. And I like that a lot. I just have so much confidence in these guys. (1)

One measure of that confidence is in the conversations we are just able to have not just about the clinical progression of the disease, but about our personal experiences dealing with it. We mentioned that E has been notably effected by things, and gets really clingy and edgy whenever I have appointments. Nurse L suggested we see if she wants to write a story… ‘for other kids whose parents are dealing with cancer,’ to tell ‘them’ what kinds of emotions you experience, and how you can deal with them, and what to expect. We broached that idea with her tonight, and she lit up! She wants to help – even to the point where she wondered if the two of us could write a book together about it! (2)

The big clinical takeaway from this week is that the cancer hasn’t grown.(3) We already essentially knew that from the U of M scans in late October, but Dr. Rini confirmed a lot of what we’d learned up there, and helped us chart a course forward from here.

Basically, it’s like this: The little tumorettes on my lungs have stayed the same size. On one hand, that sucks, because the intention of the IL-2 treatment was to make them go away. That didn’t happen, which sucks, but… they didn’t get any larger. The fact that they are growing extremely slowly, the fact that it’s localized to the lungs, the fact that there aren’t any more than nine of them (possibly less) (4), is pretty good news – and it combines for this result: Since there’s no appreciable growth, and since the side effects of the next meds up – sutent and panoxapib – are pretty serious, we’re going to take a wait and see approach.

Part of me is annoyed by this. I want to take the battle to the cancer; side effects be damned. Dr. Rini said today that, from all he’s seen, IL-2 is the single worst treatment for any kind of cancer there is, and hell, we got through that! But a bigger part of me is really, really grateful that we essentially get at least the next four months off from any kind of treatment. I’m just now really starting to feel more like myself after the summer sessions at U of M. It will be nice to maintain this quality of life for another quarter year, and hopefully longer if the nodules stay where there at.

So we will wait, and scan. Wait, and scan. And if the little baby tumors decide to grow, we’ll pull out the drugs and try to slow them down. Dr. Rini said today that the median survival time after going on drug is 2.5 years; half of people get less than that, half get more. Based on my physical condition, and the slow progression I have had so far with disease, he says he’d definitely put me in that latter half. (5)

I wish I could say that I stay positive all the time, but I simply don’t. Sometimes, during a workout, I’m trying to take a deep breath, and it doesn’t come, and I wonder, my God, have the tumors grown? Is the clock ticking? Am I looking at months rather than years? It eats away at everything in your soul, and makes it incredibly hard to live within the moment, and REALLY difficult not to get upset or jealous when people talk about their retirement plans, vacation ideas for when their kids are older, and on, and on.

Two years ago, it would have tripped me out if someone said that the GOOD news is you don’t have less than three years left! But right now, I’m pretty damned happy about that. There’s also a best-case scenario worth mentioning: There’s a chance that the IL-2 may have arrested the progression; should these nodules stay the same size through next July, Dr. Rini said he’d be willing to declare a truce with the cancer, and back off the check ups. (6) Being back with these guys, I feel a lot better mentally – we’ve got some real time, we’ve got some tools, we’ve got some hope.

We also maintain a hope that things will change in treatment options in this multi year window. There are new cancer drugs going through trials every day; new treatments including the genetic mapping, the weird modified AIDS treatment… novel, crazy stuff that might just provide a legitimate cure if we can push the game clock out a little further with each step in the process.

Bismarck said that politics is the art of the possible, but he may as well have been talking about cancer treatment. I don’t want to be too cliché, but it is what it is. And that’s the way you have to look at this delicate dance. Sure, we have some down days here. I can’t remember many days in my life worse than when we were told the IL-2 didn’t cure it (although The Fumble and Jose F***** Mesa do spring to mind). We deal every day with what is possible; and we have faith that the impossible might just be possible, too.

(7)

(1) However, they did change the cookies I liked so much in the cafeteria.

(2) E asked about selling it at Kroger already. I'll let you know if she has a signing party.

(3) We knew that 10/29 from UM. No new scan were done at the Clinic.

(4) UM had 9 spots the radiologist commented on in the written report. Dr. R has said 2 or 3. UM did a very detailed 1.25mm slice with the CT scan. Dr. R is looking at the big picture of 4 mm slices. I'm ok with what Dr. R said.

(5) The 2.5 years is once drugs are started. We are not even at the point yet. Dr. R also said stay off Dr. Google.

(6) The UM doctor had said he has a patient who has stayed the same for 10 years. He now makes his yearly check ups a road trip on his motorcycle from WI.

(7) We have to check in with the vascular NP but since there is no treatment taking place and no growth we hope Joe will be done with blood thinners too. 

Next step

Monday 10/29 Joe had scans again and there was no change. Dr. A said the next step could be other drugs or nothing (since Joe has no other symptoms). We both feel doing nothing is not the best. We would rather take the steps to stop it than wait for it to be larger and have a harder fight.
We knew we would be at UM just for the IL2 treatment so before we left UM Joe emailed Nurse L. By that evening she had called us and scheduled Joe for Nov 14.
As an aside having Nurse L work "after hours" shows just how wonderful the CC and it's staff are. Amazing. It is weird that I'm excited to go back there (and not just for the yummy cookies).