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.

Joe's words

“Of course it is happening inside your head, Harry, but why on Earth should that mean that it isn’t real?”

I didn’t go into Week Two of Interleukin-2 treatment with closed eyes. Every doctor, every nurse, every tech, every website had warned us that Week Two would make Week One look like ginger beer. It was all true; everything that was tough about Week One was multiplied in Week Two, each response, each emotion, each side effect.

The week actually started out strong; real strong. I powered through four consecutive treatments on Monday and Tuesday. I felt way more sick to my stomach than the first week, but with Katie, Mom, and Kathy’s support, made it through. They held my late dose on Tuesday when my BP crashed, and they started the dopamine. Somewhere in that Tuesday dose, things really stopped being fun, and I kept thinking – at this point, not hallucinating – about my Uncle Paul. His unit’s motto – ‘See It Through’ – was going through my head. It was much more like a ‘Field of Dreams’ voice instead of a dead Jedi vision, but it helped me focus, and helped me power through. The big problem when you go on dopamine is that it means you’re getting vitals every hour for the rest of your stay – unless they have to up the dose, in which case it’s every 15 minutes.

Wednesday, they pulled the trigger on a 4 p.m. dose. I guess this is a good place to describe the life-cycle of each dose. It’s not like morphine, where you feel it right away. Most doses didn’t even begin to present symptoms until about an hour or two in. That’s when the headache and shakes would start amping up. They’d give me some Tylenol, layer my body with warm blankets, and wrap one around my head. As all of that started to pass, and the really ‘loud’ symptoms started to subside, I would generally start to feel the first waves of nausea. That ill feeling would linger, ebbing and flowing, right through hours eight to ten. If they skipped the dose after, you generally felt pretty much OK again about ten or eleven hours after the initial dose.

That night got uglier and uglier. The shakes were really bad. The nausea was thick (in every sense of the word). And through it all, my BP kept going lower and lower. Let me pause here and tell you something you never, ever want to hear from nurses in a major teaching hospital – “His diastolic is 20. Have you ever seen one that low?” With the BP that low, they had to keep upping my dopamine. And every time that dopamine got boosted brought us one step closer to shutting down the IL-2 treatment and being admitted to the ICU. It was the middle of the night, and I was good and scared. My nurse that night, M, was simply awesome. She is a retuned Peace Corps volunteer, and I asked her to tell me stories about the South American country in which she served. It gave me something to focus on as I tried to wiggle my toes, pump my fists, think about adventures… anything to try to get my mind to bring up that BP, if such a thing is even possible. No matter what I tried, my BP kept fluttering around at low levels. Every 15 minutes, the cuff went on my arm, the clip on my finger, and the thermometer under my tongue. That continued until about 10 the next morning – 12 straight hours of being poked, prodded, examined, and basically in a state of constant insomniac agitation. When Dr A came into see me on Thursday morning, I was no longer Bruce Banner – I was the Hulk. He took one look at me and decided to hold the 8 a.m. dose; a good call, since I quite possibly would have pulled the catheter out of my own neck and choked him with it had he decided to go forward! They held the afternoon dose, gave me some Ambien out of pity, and I slept like B.A. Baracas on a plane ride for the afternoon and early evening.

The thing was, I didn’t come to the University of Michigan to get sleep. I came to get sick. They decided we would go ahead with the midnight Thursday/Friday dose, which, because of the progressive build-up of the medicine, we knew was going to be pretty brutal. I was OK with this, because Thursday night brought something I had been promoting to all of the nurses, assistants, cleaning people, meal deliverers all week – Erik Kynard’s appearance on Late Night with David Letterman! I managed to con two nurses into coming into watch it with me. M was fiddling with the lines coming out of my neck when Dave came back from commercial to introduce Erik. They were both QUITE impressed with the young man from Ohio (I am pretty sure M said he was cute), and I just couldn’t believe it. Watching Erik in the Olympics on the iPad had been surreal enough – and here he was just kicking it on the couch with Letterman, and totally holding his own! As a teacher, I’m so happy for our kids when they achieve their goals, and I’m just as happy for my firefighters and nurses and tradesmen and teachers and servicemen as I am for our Olympian – all of them, going out into the world, establishing themselves and becoming HAPPY pillars of their communities. I’m so proud of who they all are becoming, and in Erik’s case especially, of how they are inspiring. So at a really bad time in treatment, Erik really gave me comfort, and I will always remember that.

That night’s side effects were among the worst I experienced. The nausea was really intense, but that was secondary to the itching. The only way I can describe it is as if you were having a line of a dozen fish hooks dragged across every square inch of your body. And there’s nothing they could do. M, my night nurse, tried to rub on some stuff, and gave me a benadryl, but even she admitted that this itch is well beneath the skin, and there’s really no addressing it. Of all the side effects, this was my least favorite, and it cost me another night of sleep.

But the itching didn’t effect me quite as much as something that didn’t even happen to me. The next morning (Friday), just after Katie arrived, doctors came to talk to my new roommate. He had come into the ER the previous night with stomach pains and constipation. The doctor was telling him that they’d found a mass between his gallbladder and liver, and that it was likely cancerous. It was like getting punched in the gut, because this guy was EXACTLY where I was a year and a half ago. As he and his mother absorbed the news, I was in tears. My friend Kate, who is a survivor, told me when I got diagnosed that she always hoped her disease meant that she’d thrown herself on the grenade to save everyone else. I learned that I felt the same way, and hearing that this guy was now part of this terrible club really hit me – especially the more we got to know Gary, his mom, and his wife. They are just wonderful people, and I pray for them as often as I can.

As the day inched toward lunch, I knew Dr A and Dr R would be coming through on their rounds. I was not-so-secretly hoping that they’d just say “We’re done! Go home!” They came through around 2 p.m. to talk. There’s no evidence that one more dose will make a difference, Dr. A said. But do you really want, Nurse P asked, to come back for scans in a month, and have gnawing at the back of your head that you could have taken one more dose? Dr R leveled with us – it’s going to be horrible, and it might mean you don’t get out of here tomorrow. I had really been banking on getting out Friday night or Saturday, because I wanted to get back to Rogers for Erik’s ceremony – where I knew my in laws were going to have the kids, who I hadn’t seen in a week. I looked at Katie, and we just kind of nodded at each other, and we committed to the 4 p.m. dose – my eighth of the round, and as Dr R guaranteed, the worst.

It’s funny how some of the side effects were the same each time – headache, chills, BP – but just differed in intensity. Other side effects, like the itching, only showed up sporadically. That was especially true of what they like to call ‘psychosis and confusion,’ or as we common folk say, hallucinations. As long as you can tell that they’re not real, Dr. R said, it’s all OK. During the first week, I had a few of these little visions; one in which there was a charming Hobbit village to the left of my bed, and a knot of snakes to the right. Another vision had me on a flying car ferry leaving France. In the weirdest one, I knew that my hospital room was earth-tones, but I kept seeing it as forest green and blue. Each time, I knew it wasn’t quite real.

This time was different. The initial hours of the treatment had been really bad; from 5-8 I was really, really sick – vomitthon sick. When my body calmed down from the violent sickness, my BP started to crash down again, and I was really distraught. I knew that if the dopamine kept climbing, and I ended up in the ICU, I wasn’t getting out of here until Sunday night at best. And about this time is when things get weird.

I believe in God, and I believe in miracles. But I also believe God gave us intelligent minds for a reason, and science strengthens, rather than weakens, belief. So that makes what happened next I have to explain in terms both scientific and faith-based. Rationally, logically, I know that what I experienced was the psychosis and confusion attributable to IL-2. But how that psychosis and confusion was manifested I am sure was the work of God. Standing around my bed that night, as Katie sat to my left, were my great-uncle Paul (wearing his Class A’s) and all four of my grandparents, who have all been gone at least a dozen years. They held my hand, they stroked my face. During the 15-minute vitals checks that became necessary as the dopamine increased, they talked with me about a wide range of topics, and those conversations are as real and personal to me writing this now as they were that night. They shared with me their advice, and they kept me calm. My nurse, K (who was another angel), asked why I was smiling every time he came in, when I should have been agitated. I didn’t tell him. It was a special time for me, because I never really knew any of them as an adult – and I never knew great-uncle Paul face to face at all.

When I was in France in June and sat at his grave, I thanked him for everything he has given me. And frankly, he has given me everything. My senior seminar for my undergrad was a paper about his unit – he’s the reason I graduated from college. My interest in his story was why I loved history – he’s the reason I have this amazing career. My trip to France, and by extension, Corey’s trip and Sam’s trip – was because of an essay I was able to write about him. He’s the reason I was able to be part of an institute that I think is going to change the way I teach, and  he’s the reason Corey and Sam’s lives will never be the same. And every time I think he’s given me everything I could ever want or need, he gives me something else. Last Friday in Ann Arbor, it was courage I was sorely lacking and comfort. Here’s the craziest part: I was the sickest I had been yet; my BP had crashed; and yet after the visions started, my BP held steady every time K reduced the dopamine. By 2 a.m., I was weaned off the dopamine, and was able to sleep. I thought again of that great quote from Dumbledore in HP 7.2 when Harry sees his dead parents and friends in a vision, and asks Dumbledore if it’s all in his head. And the wise old wizard says “Of course it is happening inside your head, Harry, but why on Earth should that mean that it isn’t real?” I’m glad God was able to spare me five angels for a few hours.

When the morning crew nurses came in after 7, I was more or less awake and more or less refreshed. They ran vitals, and said they were going to call Dr A, and I was going to get released. I was dumbstruck; with the dopamine run overnight, I was sure I was going to get held longer, and miss the RHS celebration. But things started to move quickly; catheter out of the heart at 9:30, paperwork done at 9:45, and in the car at 10. I was pretty weak and pretty out of it, and Katie asked if I still wanted to go to Rogers – I told her to let me sleep a little in the car, and we’ll make it a game time decision. By the time we reached the Central Ave. exit on 475, I said, yeah, let’s go. A half hour later, I was back at Rogers, and it felt like home again. All of my best friends from work, my kids on my lap, stands full of some of the best kids I’ve ever taught, and one phenomenal young guy up there getting the keys to the city. I had to make sure it wasn’t another hallucination. I’m still not sure it wasn’t.

So, briefly, from here the path is pretty straight-forward. I’m recovering at home for the next week and a half. We have a check-up at U of M next week; CT scans at the end of September. We’ll find out then whether or not the IL-2 did its job.

Grumpy

I got to Joe's room this morning to find him very unhappy and grumpy. He had the 4pm dose Wednesday (making it dose 5) and about 9pm his BP got really low, 80something over 20something). The Dopamine was increased and they tried to find a good level. At one point he was at 7mcg and at 10 they would have sent him to the ICU. The BP did not settle until after 10am which meant he had vitals every 15 minutes. He did not sleep from 7pm until after 10 am and he was very very unhappy (like Sunday Cleveland Browns lost it in the last second unhappy wait angry is better).

Once his BP stayed above 85 (usually 90 but they gave him a break) he went to vitals once an hour. He got some sleep in the afternoon and even got a few laps in walking the floor. At 3 Dr. A stopped in and there was talk about going forward with the 4pm dose. After talking with the other staff they choose to skip the 4pm so he could sleep more and with the hope that with his BP more stable longer it would be in better shape for the midnight dose. He slept for more than an hour with the help of Ambien went right back to sleep after vital checks.

Before I left for the night at 8 he walked a few more laps on the floor.

This kidney function is much better this time. His appetite is better too- he is craving Myles Pizza.

My Mom reports my brother Rick did a great job with the kids. The house was clean, dishes done and laundry folded and put away. He better watch it because he might displace Betsy as my go to person for extended child care (other than grandparents that is). 

Thank you all for the prayers, texts, and humor (and the glass of wine Laura).

 

Found him better than I expected

I got to Joe's room a little after 8am. He looked much better than I expected after seeing him on FaceTime last night with the kids. Doses at midnight and 8am were held but the previous 4 we're given. He had not received 4 in a row before. He held off on the ativan as long as he could buy did have some last night. He slept good but it brought down his HP so the Dopamine was started after midnight. 

He had a little breakfast and is talking about a shower and a walk.

Thank you all for the prayers and support.

Three doses in

Joe's Mom is with him today and I got a report from her. Joe's BP is holding good but the nausea is more difficult this time. He has received all the doses schedule to this point (Monday 4pm, midnight, Tuesday 8am).

Yesterday we had Ellie with us since I would be going back the same day and it was an asy first dose for Joe. We left about 8am and Ellie and I were back about 9:30pm. I think letting Ellie see that is involved a lot of sitting around and waiting made her see that it is not all she made it out to be in her head (she is my daughter after all). She did enjoy eating out if you call cafeteria dining eating out. Her and I sat in the waiting room planing Scrabble on her iPod while Joe had the central line put in again and then Joe and her played once we got Joe set in his room. She enjoyed taking control of the tv in the prep area and again in his room after lunch. Joe also had her as his walking companion as he walked the floor exploring (different wing than last time because they were remodeling).


She did not have any issues about the medical stuff. She did cry a little leaving Joe and on the drive home but more so because she will miss him. No different than other times he has been away for health reasons of travel adventures. I'll be in BG tonight to get Rick settled with the kids and leave early Wednesday morning to be with Joe until Saturday. Thanks again for all the prayers and support.

Rebound

Joe had a check up yesterday. It was simple compared to everything else- just blood work and physical exam.
Happy to report all looks good. His kidney function rebounded nicely.

Outside of health dealings...
We have had fun evenings with much laughter with the kids this week. Many belly laughs. We all had a good cry Sunday when Joey found Mr. Freckles had died. Joey won him at the Fulton County Fair last September. We gave him a proper burial and grave marker in the yard. Joey's sorrow was short lived because Monday night he won a new fish at the Wood County Fair.
We are (well at least I am) getting everything together for school starting in a few weeks.
My schedule BGSU starts 8/20, Ellie & Joey start back Wednesday 8/22, Mark starts preschool 8/27 and Joe starts 8/28 but does not expect to be there the first week for his high school classes or his BGSU class he is teaching on Tuesday nights.
I had taken Ellie's uniform pants to hem last week when sitting with Joe in the hospital but I was not into it. At the rate she is growing I should wait anyway because it will be a month before it will be cold enough for pants.
Being that I'm a planner and organizer, working out logistics for next week gives me a little joy. I just hope my brother can handle the kids.

Thank you all for the prayers, meals, gift cards, cards and anonymous donations. We are very blessed to have great people in our lives.

I had tried to post photos last week and it did not work so here is my second attempt.

Don't worry this was a staged picture.

In Joe's words

Post by Joe on FB 8/6/12

They told me what I should expect from Interleukin Two in the appointments before I started treatment. In fact, it was pretty much a day-by-day itinerary of what side effects I should expect at what point. At some level, I understood all of this. Words like 'nausea' and 'hallucination' are words I believed I understood, and frankly, at certain points of my undergraduate experience, they were just part and parcel of a weekend poorly spent.

At a deeper level, though, I think I really thought I was going to avoid all of it. After all, I had a Captain America shield. But what happened over the past week was beyond unpleasant. And now that I know that the doctors really weren't kidding, and that Super Soldier Serum has not rendered me immune to the side effects, I can say that for the first time in our year and a half of fighting renal cell carcinoma, that I felt like a cancer patient for the first time. 

We reported up to UM Medical Center on Monday to begin the treatment, and just as the doctors said, that first day wasn't bad at all. I walked a mile and three quarters in the loop around the eighth floor, read a book, watched some movies on my phone. It was like vacation, except with a central line inserted in my neck. The next day wasn't so bad, either! I finished up my last bit of grading for the BGSU class I was teaching, read a little more, walked a little less, and that night, developed one hell of a headache. That was the pebble at the beginning of the avalanche.

Wednesday was kind of bad. I only got out of bed a couple times, and I felt this lingering stomach churn. It's not like the nausea I was used to. That generally came and went in a few hours, culminating in a nice, satisfying vomitthon, some cold sweats, and waking up the next morning feeling OK. This stuff just hung around, all through Wednesday and Thursday. Twice, it got me to the point where I was sure I was going to hurl, but it never really came to fruition. I didn't get out of bed at all Thursday, and they started mainlining more and more drugs down the hatch; drugs to deal with long term nausea, drugs to deal with short-term nausea, drugs to deal with the headache, drugs for this, drugs for that, and then, the drugs to build up my BP, which had crashed to 75/40-something because of all the drugs. The fun part about that drug was that now I had to get disturbed every 15 minutes for vitals.

Thursday night into Friday was the worst - just like they said it would be. I can't really explain this, but those last two days I was utterly, completely exhausted... and yet completely unable to go to sleep. When I did get sleep, it was accompanied by the most vivid, detailed, complex dreams this side of "Inception." And while I'm on this topic: Why is it that these dreams included friends in trouble, finding corpses, and massive vehicle crashes? If I must have detailed dreams, can they PLEASE include any combination of large yachts, prime rib, Bermudan beaches, my family, and/or Princess Leia?

They discontinued treatment after the early Friday one because of the BP crash, and my general physical and psychological state, which was somewhere in the Crispin Glover neighborhood. They held me the rest of the day, and into Saturday, until they were sure I was stable, and then sent me home with 20 puffy new pounds of water weight since my lonely little kidney basically shut down after Wednesday.

We came home by way of the Sisters of Notre Dame mother house, where sister-in-law Maggie Hagan was having her baby shower, and I got to see my sibs-in-law and Ellie for the first time in a week. From there, we went home and I got BIG hugs from Jophus and Mark, who then headed north with Papa so Katie and I could have a quiet house to recuperate in. Saturday night was pretty rough - I had some fluid in the lungs - and Sunday I called Dr. R, who got me a diuretic that cleared up the lungs. I pretty much spent all of Sunday on the couch with my dad watching the Olympics and trying to keep the headache down. Last night, though, was kind of a turning point in a number of ways, the most important of which was that I was able to find a spiritual centering again. The whole time at UM, I prayed - but it was the prayer of a person who is simply saying words while struggling through the experience. I couldn't find peace except in small, small moments. Last night, I was able to actually have that peace and quiet for a sustained period to make a real connection. 

Today was the first morning in almost a week that I woke up feeling mostly human. I got about six hours of sleep, which is two less than I generally need, but four more than I'd been getting in a single throw for quite a while. Grandma and Dad Slaw came over to hang out with me and experience the spectacle of the tree cutting in the backyard.

Watching that tree come down today was really hard. It's hard not to find symbolism in nearly everything when you're in the middle of something like this. Between Joey's fish dying last night, and the tree going this morning, I felt a profound sense of mortality. But as Grandma and I watched Jeff Mantel and his crew expertly take that tree apart - and as we saw how rotted it was, and what a danger it possessed, my frame of mind shifted. The tree - as beautiful as it was, as much it killed me to see it go - was a danger to our home and our safety. It was painful, and it's going to take adjustment, but we're better off having been through it. I'm choosing that metaphor as we look at going back to UM next week. Words cannot express my anxiety for going back - they have already told me that week two will be much worse than week one. And week one was pretty much one of the worst weeks of my 37 years on this Earth. I took another sign this morning, too, and that was the successful landing of the Mars rover. Everything had to go right at a million different points - and it did. And it can for any of us.

I sure do appreciate all of your thoughts and prayers throughout all of this. I apologize to anyone whom I haven't called or texted or emailed back to since Tuesday. Those who know me know that I'm a talker - but I just haven't been able to even talk much until yesterday and today, and this is the first time I've gone down the stairs to use a proper keyboard.

Love  to all - and stay in touch!

Friday 8/3

One can be told all the side effects but until it happens it is not know for sure.

Now we know for sure. 

Joe's BP has been all over the place not crazy high like 140 but going from 88 to 114 until the Dopamine is controlled. 

He is so beat. So tired and fatigued.

Think parent with a newborn, while being hung over with the flu then add in a marathon and you might be close.

We have been told to not count the doses but we do of course.

For the record here is what has taken place:

Monday 4pm, Mon/Tues midnight, Tues 8am, Tues/Wed midnight, Wed 8am, Wed/Thurs midnight, Thrsday 8am, Thurs/Fri midnight.

When a dose has been held it has been because of BP.

We don't know if today's 4pm will be held (but BP has been good). We don't know if he will be discharged today but his nurse says even those who get the 4pm dose some are still discharged that day.

I'm making tentative plans for us to stay at a hotel in Ann Arbor tonight so he can get some good sleep before going back home.

He is very very tired which is hard to beat when vitals are checked every 15 minutes when trying to regulate his BP but not much better when woken every hour for normal vital checks.

He is getting Tylenol around the clock as well as anti nauseous meds (maybe more than one kind), mouth rinse (mouth sores are common on this drug so they try to keep ahead of it with sodium chloride mouth rinse every two hours), and something for sleep/anxiety.

He has not showered or changed clothes since Tuesday but he has thought about it a few times just not the energy to do it.

He is still getting the Lovenox for the blood clot (at a higher dose than usually which I don't fully understand) and IV lines are flushed with Heprin at least once a day. He is due to have lines changed today if he is not discharged.

He misses the kids and has had moments when he just wants to go home. 

The staff is wonderful and I'm understand how to get around better.

They do have yummy chocolate chip cookies but not as good as the Cleveland Clinic.

Thank you all for your thoughts and prayers.

Wednesday morning

Joe was not given the 4pm does Tuesday afternoon because his HP was too low. He felt better and had something to eat and was able to watch some movies he had loaded on his phone. When I left after 8:30 he said he was going to get some sleep after using the bathroom but he posted pictures of him walking the halls.

He did have the midnight and the 8am dose as his BP has been great.The nausea is fierce! They have given him something for sleep and nausea. I'm in BG today (arrived late last night) and will be back to his room Thursday morning.

We have been told no one gets all the doses. Most get 8-10 of the 14. It is not as if he has to make of the doses- it is just skipped.

Thank you all for the prayers and support.