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...

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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...

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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?

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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).

Where we stand

We did not receive the news we wanted at Joe’s CT scan on Friday. There was no change to the metastatic tumor in his lungs. Both the U of M and Cleveland Clinic doctors want to have him checked again in 6 weeks on the chance that he has a late response to the treatment.

Thank you all for your prayers and support.

Many more people are following Joe’s story now. Here is a recap.

3/20/11 Joe decides the night before to run the Churchill’s Half-Marathon instead of the 5K. He develops of cold that leads to more and he is prescribed antibiotics (something I’m not sure he really needed).

3/30/11 Joe tries first ReadyCare for constipation from the antibiotics then Wood County Hospital (WCH). The staff ordered a CT scan looking for bowel obstruction or appendicitis (from what we know now his complaints and symptoms were not at all related to his appendix and therefore there was no need for a CT scan). He was told there was something on his kidney, when I got there they were admitting him for the night. After meeting with the doctors at WCH they were almost sure it was cancerous and said the Cleveland Clinic (CC) is where he needed to be. They worked on contacting the doctors at CC and, for a while, were planning on a transport to the Cleveland Clinic. We got the info on the surgeon at CC and made an appointment for a meeting with him. They determined there was no reason for him to continue his hospital stay. Discharged 4/1/11.

4/5/11 Met with Dr. K. at the Cleveland Clinic. Surgery scheduled for 4/11/11. CC opted to do their own pre op scans. Results showed some spots in his lungs, but we were unsure of what they were.

4/11/11 Removed right kidney, adrenal, and 10 lymph nodes. Adrenal and lymph nodes were clear. Discharged 4/16/11.

4/19/11 Pathology report confirmed renal cell carcinoma. Tumor was 7.5 cm, Fuhrman nuclear grade 4, stage 3 at surgery (stage 4 at spread year later)

4/26/11 Staples removed at WCH.

4/28/11 Pain in groin begins; thought it was a muscle pull or hernia.

5/1/11 Woke at 2am with left leg swelling. Went to WCH ER. Blood clot (Deep Vein Thrombosis (DVT)) suspected and Heparin started.  6:45am transfer to Cleveland Clinic with Dad B in ambulance with him. It was the day of Ellie’s First Communion. We kept the family gathering planned to celebrate Ellie. When Joe arrived at the Cleveland Clinic. Coumadin started.

5/8/11 Discharged.

6/6/11 Got the call that Joe was accepted into a trial at the Cleveland Clinic for a drug called Pazopanib. It is already used for metastatic tumors, but the trial is to see if patients are given it before metastatic tumors form if it will keep the tumors from growing.

6/15/11 Trial drug started Pazopanib 800mg.

8/26/11 Stopped Pazopanib because Creatintine (kidney function indicator) was 1.9. The high end of normal is 1.3.

9/1/11 Started back on Pazopanib at 600mg.

9/12/11 Taken off Pazopanib again because Creatintine was 2.1, blood work scheduled for 9/19/11.

9/19/11 Ultrasound in Toledo to check DVT. Local staff doing the ultrasound may have overreacted when they saw there was still a clot.  Not knowing how bad it was to begin with, they did not know how much better it was. He went back to Cleveland Clinic for an overnight. It was decided that he would be moved to Lovenox subcutaneous injections because it would keep him at a more therapeutic level.

11/3/11 CT scans show he was “clean enough.” the spots  were still on his lungs; still not sure what they are. Dr. R said he is paid to be cautious so he is.

2/24/12 CT scans shows no change in areas of concern.

6/8/12 The Pazopanib year long trial ended. CT scans show the spots on his lungs have grown and now are called metastatic tumors*. Plans made to have Joe unblinded from the study so doctors know what the options are. Starting process of contacting doctor at University of Michigan for Interleukin-2.

*Important to note this is still renal cell carcinoma not lung cancer. The tumors are made of renal cells that have spread to the lungs.

6/12/12 Shocked to learn Joe was on the placebo. Contact made with doctors at University of Michigan for next treatment. Cleveland Clinic staff gets info to UM staff including part of the original tumor that was removed in April for their staff to confirm original diagnoses.

7/5/12 Meeting with Dr. R on IL-2, blood work, doppler on leg, still some blockage in upper thigh.

7/10/12 UM CT scans.

7/17/12 All systems go meeting for IL2.

7/30/12-8/4/12 Joe at UM for IL treatment. 8 doses administered. Very low blood pressure and dopamine used. Day after retuning home spoke with doctor about water weight and wet cough. Diuretic prescribed.

8/9/12 Blood work and physical check at UM. Creatintine levels bounce back.

8/13/12-8/18/12 Joe at UM for IL treatment. 7 doses administered. Very low blood pressure and dopamine used. Prescription for diuretic.

8/31/12 Blood work and physical check at UM. Creatintine levels bounce back. Still some water retention.

9/14/12 CT scans show no chance in the metastatic tumors. Recheck in 6 weeks for possible late response.

He is being modest

Joe down played the celebration at Rogers for Erik Kynard Jr. He wrote about three sentences for what was a life time moment.

When we got to RHS I expected we would be late enough for the ceremony to be over and Joe to go into the school for the press conference part to see Erik. Large public events being as they are, the parade was just coming into the football stadium so we had not missed anything.
As we walked (slowly) to the stadium, Joe was stopped by staff and students surprised to see him and happy he could make it. We joined my parents and our kids in the bleachers to watch the ceremony. Many politicians and dignitaries spoke- board members, the superintendent, the principal, Congresswoman Kaptur, Mayor and on. After August 18 was declared as "Erik Kynard Jr. Day" and the Key to the City was given, the Emceee went to to recognize others in attendance. He asked if 2010 Teacher of the Year Joe Boyle was in there. Joe was sitting a few rows up with our boys in his lap and raised his hand. As people clapped, Erik left the stage, crossed what is typically the team side lines, then the track then jumped the fence to greet Joe with a hug. (If you got chills reading that you are not alone as nearly everyone I tell the story to gets chills or tears up.)

 

If ever there was a moment when Joe wondered why he was teaching where he is, this is the answer. To be recognized by a former students, all around good kid and student, a NCAA Champion, and now an Olympian just after being released from the hospital for cancer treatment-there are no words.













Another speaker, school counselor Ward, was an organizer of the event. He is one of the leaders at the school in supporting the students and continues his counselor role well after they graduated. His spirit for the students one can't help but catch making RHS the great place it is. He had a great Top 10 list in recognition of Erik's appearance on David Letterman. Ward showed off the Crazy Socks he wore in honor of Erik.

In talking with Erik and his Mom after the ceremony we find that Erik had been wanting to connect with Joe the last few days.  Erik had been in contact with Ward trying to work out how to see Joe. At one time he was trying to get to the hospital to see him but time did not allow. Friday evening I was texting with Ward because Erik was going to FaceTime with Joe. Limited time and wireless for Erik and Joe's low blood pressure and vomiting would not let it happen.

 

After the ceremony Joe was stopped by students and parents happy to see him. We did get a chance to go back to the school to see Erik one more time.
We look forward to following his NCAA and World events before Rio in 2016.