The fine art of nothing

One thing I have come to appreciate while going through treatment is the beauty of nothing.  It started as I recovered from surgery, sitting on our porch, needing absolutely nothing in the form of entertainment. Heck, then watching a leaf move was mesmerizing, even on a still day. Throw in a butterfly or bird and I was a captive audience. Add a little breeze and I was hooked for hours.

There is something to be said about cancer and the depth it brings to living, not that I wouldn’t trade this keen perception for clear skies in my health forecast. Sometimes I sit and look out at our less than average subdivision yard with a sense of contentment that makes me wonder if I’m not turning into a simpleton, because I could easily sit there for hours – watching nothing in particular. Granted, pets and neighbors and regular family interruptions keep it from getting bland, but I look forward to this time of nothing.

People seem to have a hard time with nothing. If there is a lull in conversation, someone has to talk. If there is a void in action, someone comes up with an activity to engage the group. I don’t want the pressure of required conversing or predetermined plans. What I treasure most is an empty schedule.

The fatigue from treatment makes me cringe at commitment. I’m never sure when my energy level will come crashing down, so I prefer a clear slate as often as possible. With my job as a photojournalist, that can be a monumental challenge and that is why I treasure the fine art of nothing. Treatments give me justification for saying no to everything except family, friends and my front porch. If it wasn’t for knocking the snot out of me the few days following an infusion, I almost look forward to days of emptiness with books, movies and a big front yard waiting for my attention.

Thankfully, my family goes about their business to reunions or pig wrestling or festivals or places where people are expected to dress nicely, carry a conversation and do something, anything, other than nothing. I’m sure a day will come when I want back in that circle, but I am content in my recluse nature for now, keeping a core of people close to me, channeling my energy to them when they stop by.

I would give anything to say cancer is not a part of my future, but I wouldn’t trade anything for this new-found joy in the minuteness of life, in perfecting the fine art of nothing.

10K and the 16-pound backpack

The story of my treatment wouldn’t be complete without the story of the 10K race and the 16-pound backpack, not simultaneous events, but each took place on the same day.

My daughter and I started running races together last fall when we ran a half-marathon together, the first half-marathon for her and her husband and the first time I had revisited that distance in about 36 years.  Ask any mom the joy in sharing experiences with one of your children. There aren’t many who are able to share such an activity with their daughters, so when she brings up a race she wants to run, I jump at the chance to join her.

Despite melanoma treatments, I have continued to run, only missing about a week after my surgery. My pace isn’t always fast, but I go the distance (if you get the Hercules inference). When my daughter, Steph, who is pregnant, brought up a local 10K race she joked about making a shirt that said “I may be pregnant and slow, but I’ll finish this race.” In that case, I added, I wanted a shirt that gave the reason for my turtle’s pace. I threw the challenge to our graphic designer at work who created two shirt logos, which we ironed on the backs of our shirts for the race, mine saying, “I may be slow, but I won’t let melanoma keep me from finishing this race.”

Donning our shirts, we warmed up and took off at an easy pace in the Summit Fest 10K race. Although it started heating up toward the end, it was a nice course and a good race. We both finished with decent times, both second in our age groups (not as impressive sounding when you know there were only four or five in each age group), and we had fun. It was a moment I wouldn’t trade for anything.

So what’s the big deal you’re asking? That’s not much of a story so far.

This was a week after my most recent treatment. Up until then, I had only done training runs, which can be slower than turtle pace, so I didn’t know what to expect. I also didn’t know when I signed up for the race that I would be working most of the afternoon after the race.

As a photojournalist, I carry all my camera gear with me when on assignment, which totals to around 16 pounds of gear. I use a backpack to spread out the weight as much as possible, but still, after three events and nearly three hours in the sun with my gear on my back, I could feel the day begin to take its toll. Waiting for one more activity to take place at my last assignment, I straightened my back – since I hate slouching, even if its caused by camera gear – and felt a quick, sharp twinge of pain in my low right abdomen, right about where the pocket of jeans would end. That was odd, I thought, and stretched it a little and carried on, finishing my task and heading home.

Along with being dreadfully tired from the day’s activities, pain started setting into that pocket area. Attributing it to a strain from the race, although in an odd place since I’ve pulled many muscles while running over the years, I gently stretched the area. However, the pain grew worse and ice during the evening didn’t seem to help.

The next day it continued getting worse until any change in position caused pain. But then nausea started and later a feverish feeling. Now I was confused and consulted the protocol for my treatment, monitoring the fever and getting through the night. Since I was due for surgical removal of a small (thankfully benign) lump in my arm, the surgeon examined the sore area, nearly sent me flying off the table, and decided we needed at CT scan to rule out hernia and appendicitis.

I didn’t get the results of the scan that day and decided to try a gentle run the next morning to see how it felt. While modifying my warm-up to compensate for the still tender area, the run itself was remarkably normal. That’s when I started going back over the day’s events in my mind trying to figure out what on earth I did. That’s when I remembered that quick twinge of pain, since at the time I didn’t give it any importance.

The scan came back showing inflammation but nothing else. The surgeon determined I might have torn a muscle, perhaps tearing if off the bone. Well, dang, no wonder it hurt as much as it did.

In the meantime, I had been communicating with the oncology and research nurse. They told me people undergoing Yervoy treatment do seem to experience an increase in muscle pain.

“The treatment is stressing your body. You need to listen to what your body is telling you,” the research nurse told me.

I thought I was listening, but now I’m trying to tune in even closer, cuz frankly, that hurt like hell. More fully realizing the burden and stress the treatment is placing on my muscles, I approach exercise and work a little differently, a little more gently and slowly now. And they want me to promise no more 10K races, which I can do, but there is this half marathon this fall… when treatments are more spread out…

Energy management

I’m beginning to wish the human body came equipped with a dashboard. When your car is running low on fuel it’s easy to monitor with the fuel gauge. You know approximately how far you can get before you run out of steam, er I mean gas.

As I learn how to navigate through melanoma treatment, it’s become necessary to recalculate how much I can get done before I run out of steam. Ideally, a few hours of work would be followed by at least 30 minutes of rest – kind of hard to do in a newsroom with deadlines three days a week (on average weeks). Then throw in some family activities that involve something more than sitting watching cloud formations or dragonflies. Put it on a week too soon after a treatment and you’d swear someone is siphoning your tank – every hour.

Throughout my life I’ve pretty much stunk at taking it easy. My to-do list always stretched way beyond the hours in any day – or week for that matter. I was always trying to stuff 15 pounds of stuff in a 10-pound bag, sometimes even a 5-pound bag. I always had energy to spare and man could I get the stuff done. Relaxing consisted of doing something that required, or allowed, sitting.

Now I can’t. On the worse days thinking is a struggle let alone filling even a 5-pound bag. I may sit with a stack of books I desperately want to read but instead it’s the clouds or dragonflies that get my attention since it requires no effort from me.

The president of the company I work for is going through chemo for a recurrence of breast cancer.

“The fatigue is the worst,” she told me. “I usually just head for bed and sleep it out.”

The fatigue is the worst. My schedule on the weekend of treatments needs to be as empty as possible because sometimes even sitting requires too much effort. Each day over the proceeding two weeks gets progressively better, till I’m almost feeling back to normal – and then we do it all over again.

Thankfully, I’m halfway through the infusion stage of the trial. By the end of the summer, the treatments will stretch out to once every 12 weeks, which hopefully means more energy for longer periods of time.

Right now I’m perfecting the fine art of nothing (more on that in another post), hoping it doesn’t condemn me to laziness. As I complete my treatment, I know I need to learn how to put eight pounds in that 10-pound bag, for my health’s sake.

I come from hard-working German farm blood. It has served me well all my life and gotten me to where I am today in my career. While I take great pride in that, I also realize cancer doesn’t play well with stress and cancer treatment doesn’t play at all with heavy workloads. In the quiet moments as I sit alone and watch dragonflies dart, clouds roll overhead and (like now) listen to thunder grumble and the rain’s steady rhythm, I know I have to simplify my life. Until I reach that point, I keep tapping these darn dashboard gauges trying to figure out how to get the best mileage on each tank of energy I have.