Fever All Through the Night

I experienced my first chemo-related fever last night. It sucked. Having a fever is entering dangerous territory, especially when your body’s neutropenic (low white blood cell count). I have so few white cells to fight infection of any kind, that something very small can lead to something much more extreme. So almost more than anything, the paranoia of getting sick causes the fever. Up until now, I’ve been really lucky. Many things can cause infection in my system; I’ve just managed to avoid them. But last night was a painful reminder that I still need to be extremely cautious. While I may be “Chemoboy,” by day, my arch nemesis Neutropenia is always lurking in the shadows, waiting for me to get a little too careless.

Erin and I are in transition this week. The Salvatoris were so generous to host ‘camp cancer’ at their house in Bountiful for over a month. You can only imagine the kind of raucousness a group like us brings upon a house. I’m so grateful for their generosity and hospitality. They were way above and beyond the call of duty. Currently, Erin and I are searching for an apartment together. When my brother James arrives in Salt Lake this weekend, he’ll join us wherever we end up. I think having an apartment will be good because I can control my living environment a little more. Also, we’ve been looking in a part of Salt Lake that has a lot to offer to a pedestrian. Since I’m immobile most of the time, it would be nice to be able to walk myself to the movies, a coffee shop, a library, a park. Hopefully this will open up my universe a little. Incidentally, if anyone in the Salt Lake area has spare furniture they wouldn’t mind lending to the Hardy siblings for a few months, it would be greatly appreciated. We’re scrambling to find things right now.
I’m back in the chemo infusion room again today. My white blood cell counts have recovered and we’re set to be back on schedule. It was a short delay, but the gift was the opportunity to heal a little bit before going into this week. Antsy as I get, I have to keep reminding myself that I have nowhere to be, nothing to do but this. There is no ultimate ‘destination’ to get to. I’ve arrived. Get over it.

Who’s Driving This Car Anyway?

I failed the ‘chemo test’ this week, or rather my white cells failed to rise to the occasion, so to speak. Every Monday, when I go to the hospital, I have to have blood drawn first before any chemo drugs are administered. Basically, they want to make sure I’m good and healthy before they poison me. This week, shocking everyone, for the first time my white cells weren’t high enough to administer the chemo. It means we push chemo back a week. On one hand, it’s a nice break. I have a week of nothing but recovery, and I’m already feeling pretty sassy as it is. But it’s tough for me not to have any control over my life’s schedule these days. I’d say I’m a fairly autonomous guy. I enjoy making my schedule, planning my future (at least planning my week out.) With chemo, I’m constantly reminded that I’m in the passenger’s seat. Any comments are welcome, but only to a certain extent. Ultimately, I’m not driving the car. I’m not in charge. I suddenly understand how people can become major control freaks while undergoing chemotherapy.

I was crying in the lab room yesterday with Nurse Deb (she’s really sweet). She could tell I was frustrated that things got pushed back a week. It isn’t that I’m masochistic and want all this chemo love, it’s just that it pushes my ultimate ‘end date’ back further, and I want this over with!!! She sympathized. “I can tell you want your life back.” “Sometimes, yeah.” I replied.

What’s the lesson? What is the universe beating over my head so dramatically and constantly? That I am truly not in charge of the course? I’m not sure. My sister Erin asked me this morning if I wished I were still going to South America. Not necessarily, because that doesn’t register to me as reality anymore. I’ve scratched attachment to that. But I’m still attached to that ‘end date.’ I see this glorious renaissance occurring, sometime around mid-June of next year, when I’m finally back in control, steering the wheel. When I can work again, when I can go out again, unafraid of germs and the potential for infection. But maybe that’s all an illusion. Maybe June becomes July, July becomes August. Maybe in fact, I’ll never reach that day when I get my ‘life back.’ That would imply that this, uncontrollable as it is, may in fact be ‘life.’ Geez. That works on some days, when the view from the passenger seat is pastoral enough to keep me occupied. But I’ll tell you, I am itching as ever to get behind the wheel, at least for a test drive.

Two Moments

It is just about noon and I’m scaling the rocks quickly as I can, scrambling to be the first to reach the lake. I am slightly out of breath, but exhilarated by the cool fall air against my skin and the question my friend Marcus has posed to me: how would I define poverty in the context of developing countries? We are deep in conversation about Africa, our shared love, and sustainable development, our common goal. As we climb, we are surrounded by gigantic forests of quaking aspens, enormous granite rocks and soaring falcons. We reach the summit and I stand, looking over the mountains, the lake and the rolling clouds. I drink the air in deeply and marvel. This is cancer.

It is either late at night or early in the morning. I am awoken abruptly by a sharp pain in my right side. It is a pain I am familiar with. It’s come before, as though some muscle inside my rib cage has either swollen or cramped and now pushes sharply against my side. The pain becomes almost unbearable. I have difficulty breathing, moving, finding any position that is even remotely comfortable. Instead, I cry and curse God for making me sick, for kicking me when I feel down already, for thrusting this unknown sensation upon me without the tools to fight it. I am overcome by the sensation of pain and discomfort and soon my salty tears have dampened the pillow and sheets. But I’ve built myself independently so that I can cry on my own as an adult. I can suffer in silence in my bed and not bother anyone. But Annika comes downstairs, reminding me that I don’t have to suffer alone, not tonight at least. Tonight, I have a friend nearby who can hold me as I cry and rub my aching back and try to calm me down to the point where I can breath again. I drink the air in deeply when my body allows me to, and release my pain and my hurt. This is also cancer.

The Welcome Detour

“I get really jealous of runners like that.” We were driving past the University of Utah on the way to chemo. Matt looked over and asked why. “Because I can’t. Not right now. And I want to so badly but I know that even at my best, during recovery, I still don’t have enough energy to run.” We sat in silence for a moment, Brazilian pop accenting the silent space. “Embrace where you’re at.” That was it; he kept his gaze forward, navigating Salt Lake’s East Bench.

Almost a year ago, I was standing on a deserted dirt road in a small town whose name I couldn’t pronounce in a small district called Mayaga in a small Central African Country. I was lost, apparently, and had dragged my project team into this quagmire along with me. Our mission statement had been very clear: make theatre with orphans from this particular small orphan village in Mayaga. Simple. Standing on this dirt road on a hot, dusty afternoon in September, it had become painfully clear that there were no such orphans, and if there were, we had no chance of finding them. My team grimaced, and then slowly began to fume. We’d spent almost a year planning this project. We’d coordinated, researched and fundraised, all to be able to make theatre with these kids. And we just couldn’t find them. They turned to me, their fearless leader, or more appropriately a clear channel to direct their anger. Instead, I was grinning ear to ear, almost goofy in the face. “Hey let’s go ride some motorcycles back to the main road!!” Two days later, we were contacted by a deaf school for children run out of Butare, Rwanda, the town where we were living. They would be delighted to have participants from our workshop come and work with their kids. Witnessing firsthand the strong, almost inseparable bond that immediately formed when my student participants started making theatre with these kids remains one of the highlights of my life, and one of the most welcome detours in my road.

I’m heading back up to my family’s cabin in Brighton for the weekend. Last Monday, when Matt and I visited, the colors on either side of the canyon wall were beginning to change to vibrant oranges and reds. It’s been years since I’ve visited Brighton. It felt like I was given a lens through which to see it that day with completely new vision. I was in awe of this place I’ve been coming to since I was born, the familiar made new.

I want to give you a challenge this weekend (perhaps mainly because I’ve challenged myself and could use some company here). Embrace where you’re at. I promise I will too.

Judd

The Storm

This week has been a week of ‘weathering the storm,’ which translates to good days and bad days. I’m being well taken care of by both the Salvatori family and my good friend Matt, whom I met while in Rwanda. Matt has an enduring optimism to beat all, and a doctor’s mentality. His knowledge and diligence have been greatly appreciated, especially as I seem to have developed ‘chemo brain,’ a spacey-ness that causes me to do things like spread toothpaste on my morning bagel. It’s been great to have a friend to hike and take walks with, and it’s always nice to have company at my chemo treatments, as I can hardly ever tell how I’m going to react (there was one day this week that I just sort of unexpectedly fell asleep right at the beginning and didn’t wake up until it was time to leave!)

I’ve had to psyche myself mentally to deal with a full week of chemotherapy treatments. Such large quantities of so many foreign drugs are being pumped into your system that it’s hard to tell if or when exactly the side effects are going to kick in and how severe they’re going to be. Imagine a fast-paced card game like speed, where every second you’re reevaluating what you have to play with and what’s been dealt. Every day I visit the infusion room is a new assessment: how do I feel? How sick am I? What do I feel up to? Some days, I’ve been scaling the tops of the hills just behind the house after chemo; others, I’ve been recycling most of my insides.

Matt and I are headed up to Brighton today, a beautiful mountain escape where my family’s cabin is located. We’ll meet up with the family and hopefully get a small hike of some kind in. It’ll be nice to have a change of pace. My days can really blur when I’m in an intense week of chemo. I’m just looking forward to being surrounded by the enormous pine trees encroaching on the cabin. That and s’mores over the fire. It's hard to be unhappy when you've got s'mores.