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.