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.

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.