For the most part, I am doing well these days, arguably feeling the best I’ve felt in nearly seven years with stage IV lung cancer.
Nearly seven years. And yes, my survivor’s guilt has grown considerably with each year. I wish every terminal cancer patient could have nearly seven more years.
My book Winded: A Memoir in Four Stages comes out in the fall, fulfilling the writing and publishing dream of my lifetime. I will spend twelve days with my family in Ireland in August, something I never thought possible back in 2012, when I was diagnosed.
Perhaps most exciting of all, for the first time in all of these years, I have earned permission to skip the quarterly scans and appointment I usually have with my oncologist, which means I have permission to enjoy my book launch without having the specter of bad scans — six months instead of the usual three months, and I will take that anxiety that usually builds for those three months and spread it in a thin layer over the six months as if it were a lite anxiety sandwich, so much easier to chew and swallow than the regular version.
The scans that preceded my oncologist’s permission were fabulous in their “unremarkable-ness,” unremarkable being the word that pops up frequently in radiology reports when things are going well in one’s body. Unbelievably unremarkable, and to be honest, completely unexpected. Since I required stereotactic body radiation in February of 2018 for what appeared to be a growing spot on my left lung, I was pretty sure I was on my way out of the universe; I had appreciated my five years beyond diagnosis, and it didn’t seem fair that I should have more than that. People on my drug who make it past the two-year mark often start to succumb somewhere between the five- and seven-year mark. I didn’t want to be greedy.
Yet the latest scans revealed that every spot in my lungs appears to be stable. Nearly every lab result for my blood tests falls within the normal range.
In the previous six weeks, I’d even had success with a new antibiotic to treat the daily cancer drug’s rash on my face, and for the first time in six years, my face, especially my eyebrows, revealed no external signs of the dreaded Tarceva rash. For years I’ve lived with the unpredictable pimples and the ubiquitous Frankenbrow that has transformed the follicles of hair above my eyeglass frames into two inflamed and ragged patches of hair-peppered angry skin.
In the meantime, wearing a relatively rash-free face with which to greet the world, I attended a lovely writing retreat at Interlochen, enjoying writing sessions, craft talks, and readings. I hadn’t been to the workshop in a few years, but the previous time I’d attended, I came home rejuvenated and full of energy.
This time, when I returned home, I hit a wall.
I hit a wall just like one of those cartoon characters who thwacks into a solid surface and bounces away, a goose-egg knot emerging on her forehead. I experienced the exhaustion that I’ve felt on and off over the years, the kind of exhaustion you can’t sleep through, can only roam the rooms of your house and try to shake off, like you try to shake the cobwebs in your brain each day.
I knew that the rash would come back when I cycled off the antibiotic. My new dermatologist had told me so. I used to take a different drug continuously with no breaks. I’d stopped this new drug just as I’d headed to Interlochen.
I didn’t know the rash would return with such a vengeance after I returned home. For the first time in years, I’d felt that the face I presented to the world was almost normal.
But it wasn’t just the rash that frustrated me.
Call me the naïve puppy who refuses to learn the lesson her owner is trying to teach her, keeps antagonizing the tenured family cat, keeps dragging that one kid’s favorite t-shirt out from under the bed to chew on, keeps finding ways to creep into that patch of wildflowers entwined with poison ivy.
I know better than most that the rash always returns if the drug is working. I’ve known also throughout this journey that the fatigue can be relentless at times, stemming from a combination of the Tarceva drug’s side effects, fibromyalgia, depression, and poor sleep.
I solved the sleep issue for several years by taking a sleeping pill, which seemed to provide at least nine good hours of sleep each night. But I hated the fog that sometimes resulted from the drug, and I worried that I suffered from short-term memory loss. Thus, I gave it up, making myself return to plain, unadulterated sleep. Which means that on some nights I am wide awake and move to another bedroom to do Sudoku, my strategy for emptying my brain of unwanted distractions and perseverative thoughts.
Perhaps my good fortune in the last year – my book’s publication, my recent stable scan and blood results – caused me to temporarily forget about the fatigue that has troubled me throughout my cancer journey. It’s a strange fatigue, because it isn’t relieved by naps; I used to be a religious napper before I was diagnosed with cancer. But somewhere along the way I lost the capacity for long two- or three-hour naps on weekend afternoons. My mind doesn’t often let me shut down in that way anymore.
And I suspect that one of the ways in which I’ve tried to outwit the fatigue is by simply ignoring it, charging through days, making myself do, do, and do. Yet I know that when I do anything in a public setting, I lose energy. I love people, but as an introvert, I lose energy when I am around people. It should have been no surprise to me then that while being at Interlochen for four days added fuel to my emotional and intellectual reservoir, it depleted my energy.
Still, I felt such sadness when I hit that wall and knew I would have to pull out of the universe once again and sit. Just sit.
And remind myself that I am a tortoise. That’s the other thing I keep forgetting. Not only do I deal with fatigue and exhaustion; I am also slow.
It’s not clear whether I’ve always been slow. As a kid who suffered from chronic and often acute asthma, I knew that I was slow at all things physical. Before I was given an exemption for gym class, I was the slowest runner and could never haul myself up that rope to touch the beam at the top of the gym ceiling.
But I also had early indications that while my body was slow, my mind was fast. I was a fast reader. I did math problems quickly. I remembered things faster and more accurately than many of my peers.
In my mid-forties, I began to have some indication of how my tortoise tendencies might affect my mental capacities as well as my physical ones. One summer I did test scoring for Pearson, the educational company with a finger in nearly every education pie in the country. Math tests. That summer I sat in my grading pod in front of a computer screen, grading for hours on end, quick numerical assessments of how a student solved a math problem, often related to a graph or a geometrical figure. From time to time, the pods would be assessed as to their members’ skills at grading. I scored high on accuracy. When I was normed against others, it was clear that I viewed the test answers in the same way as countless other graders did.
However, when I learned my efficiency score, I was mortified. I graded exams much more slowly than other graders. I made up for my deficits in efficiency with my accuracy, but it was clear that I was not a rock star in my grading of exams when it came to speed.
What I learned that summer about accuracy versus efficiency as it applied to my brain helped me to understand, in some fledgling way, why I could not grade student papers quickly or efficiently. Friends and colleagues gave me a bit of a pass – “But you’re so thoughtful,” they would say. “So conscientious.”
I could tell myself that, and I’d like to believe that some of that “excuse” was true. But I also believe that my brain simply took longer to go through a series of steps that involved complex skills: reading what was on the page before me, summarizing what I thought the students were getting at, analyzing how they might improve their manner of articulating their thoughts or their manner of supporting their ideas, and finally, communicating my observations to them in a concise but articulate way. Putting a grade on their efforts. (That last step for me was its own quagmire, triggering a myriad of concerns about how I might damage some student’s self-esteem or tip a depressed student’s mood into dangerous emotional territory).
When I finally let go of my teaching responsibilities, I didn’t have to think so much any more about why I was such a tortoise. At least when it came to reading, commenting on, and grading papers.
But the cancer diagnosis requires me to keep that tortoise aspect of my brain’s functioning in mind. This weekend, while writing long overdue thank you notes to friends, I wrote that I was “living like a tortoise in a cheetah world.”
A comparison between the tortoise and the hare might have been more apt, as Aesop already established it in our literary canon. Plus, there are lots of rabbits – hares – that wander through my back yard. But today’s world really is a cheetah world. The cheetah runs fast and sleek, its claws digging into the earth to give it balance. In my yoga class, our instructor Marie gives us metaphors to help us think about what to do with our bodies. I hear her say “Plant yourself! Spread those toes! Grip that mat!” With my newfound Google/Wikipedia knowledge of cheetah’s claws and balance, I want to add, “Grip that mat like a cheetah?”
Will that help me speed up?
It is time for me to accept that for whatever reason, I am a tortoise. By disposition, by virtue of the cancer, by virtue of my depression, by virtue of the many things that have weighed me down over the course of my life, slowing my pace.
I’ve finally relinquished the desire to be the cheetah. Sleek is not for me. Fast is not for me.
But I will claim those claws.
For as a tortoise, I, too, know about claws. If planting those claws, gripping the mat, clenching the earth or the rubble underneath me will deliver balance, I will gladly accept it. I will welcome the slow way in which I sometimes teeter, clawed foot in the air until I can place it down firmly, at whatever slow speed I can muster.
And then take the next step.