Going the
Distance
About a month ago I tried to walk
a half marathon. I've been training to walk an entire marathon for a Jimmy Fund fundraising event, following a
sample 3-month training plan they publish, and about midway through that plan
is the half. I started strong, fueled by the tunes on my iPhone – XTC,
Tony Bennett, Steely Dan, Violent Femmes, lots of collegiate a cappella from
the ‘90s and ‘00s, and, inexplicably, a rousing Kidz Bop rendition of “Fire
Burning.” My turquoise blue and orange
Asics, bought especially for this event, kept the spring in my step. I maintained a decent pace at first. About ten miles in I was struggling; my heart
was working too hard and my belly scars were sagging, pulling me towards the
ground.
I started to think about how many
more miles would remain during the real walk – I’d have the same exact distance
as I was walking today still in front of me. Was I being ridiculous to
think I could make it the whole way? I
noticed my pace slowing as I worried. I needed some motivation.
Upon reaching the last couple of miles, headed home from the far end of my
street, I texted my husband to see if he and our son would walk towards
me. We could meet in the middle and walk
the final stretch together.
This same time last year, late
August 2016, I had registered for this event for the first time, almost on a
whim. I signed up for the half marathon
distance then, and though I had never walked that far on purpose ever in my
life, I didn't really do any training. A few months earlier I had
finished a seven-month stretch of treatment for stage IV colorectal cancer:
twelve rounds of chemotherapy, one every other week, followed by 28 days of radiation
to my pelvis and lower abdomen. Physical
energy was still hard to come by. I remember thinking about
training, but never summoning the physical power to do it.
And a year before that, I could
hardly walk at all. In August 2015 I’d
recovered from an emergency colostomy necessitated by my unexpected diagnosis,
and my digestive tract now had two egresses, the new one needing all kinds of
supplies and maintenance and mental fortitude.
I had just had a port-a-cath placed, a weird plastic receptacle stashed under
the skin of my upper right chest wall, plastic tubing ascending internally over
my collarbone and terminating near some major artery, intended to ease the
delivery of destructive yet lifesaving chemicals. I was scheduled to start chemo in a couple of
days but the disease had other plans. A
mass on my ovary, metastasized from the tumor on my colon, had gotten angry,
abscessed and infected. After days in
the hospital spiking fevers, my team of doctors decided surgery was necessary,
surgery I was maybe not well enough to tolerate, surgery that might leave me in
the ICU for some unknown amount of time.
The morning of The Big Surgery I
remember speaking to an anesthesiologist.
He told me about the nerve blocks they’d use for pain control since I
couldn’t have an epidural. He told me
about the stents they would place in my ureters so they would be visible during
surgery (accidentally slicing those would be bad). He told me about the Foley catheter they’d
put in. Every time he mentioned something
they’d do, I would ask, “While I’m asleep?” and he would answer, “Yes, while
you’re asleep.” Even in my morphine haze
I was anxious about pain. I signed
whatever paper he put in front of me and was wheeled away.
And then I woke up, miraculously not
in the ICU. It was evening by then. I remember grimacing at the fresh incision,
eight inches of redness and staples from my bellybutton downward, radiating
pain. The day after, though, was the
real wake-up call.
“You
have a beautiful stoma,” a surgical resident said early that morning upon
examining my latest colostomy site, as her colleagues peered over her shoulder. The ostomy bag they had affixed was
transparent for easy peeking by doctors and nurses.
“Really?” I countered. Not the adjective I was expecting for the
round, beef-red end of large intestine now poking through a hole in my
abdomen.
“Yes. It’s perfect.
And it’s on the right side where it belongs,” she said, using “right” to
mean correct, since this one was on the left side of my abdomen. I hoped my still fledgling ostomy maintenance
routine would translate to the opposite side, and that the original emergency
egress – now sutured at the level of the fascia but otherwise an open wound –
would heal properly while I figured that out.
But her next words startled me
most: “Today we’re going to get you up and walking.” I was sure she was mistaken. I had just had major abdominal surgery. They removed the tumor, some bowel to go with
it, lymph nodes, both ovaries, my uterus, and my appendix (not affected by the
cancer; just in case). It took almost
nine hours, far longer than expected; so long that there was no time to
reconnect my colon and my rectum, leaving me with the end ostomy and my
beautiful stoma. My first post-surgical
night had been exhausting, any hope of sleep hijacked by Dilaudid-incuded
hallucinations and nurses interrupting to deal with my port-a-cath, which
suddenly and stubbornly would not return blood for the every-six-hour tests. I
didn’t know how I’d get out of bed let alone walk.
Yet walk I did, thanks to the
“Cadillac of walkers,” to quote my nurse, a giant thing with forearm rests and
a fold-out seat should you get winded, a beast normally reserved for thoracic surgery
patients. With a nurse on either side I
managed a few dozen tentative steps, declared victory, struggled back into bed
and took a nap. It was a start.
I didn’t know it then, but
ambulation would become my physical and mental therapy over the next two
years. I had been active my entire life
– gymnastics, soccer, track, high jump, and field hockey growing up, then
biking and yoga throughout my adult life.
I took walking completely for granted.
It was not exercise, not inspiring or ambitious. It was just a thing I did to get from one
place to another. Surgery took that
freedom away. I could no longer just get
up and go, due not only to physical limits, but to the ostomy variable as
well. Simply leaving the house required
an intense period of mulling over whether I was up for it or not.
Very gradually, milestones were
achieved: walking three blocks to the corner, with cane; making it on the bus
and subway, with cane; taking stairs instead of escalators, with cane, and
eventually without. I had become that
annoying slow person on the sidewalk I used to despise, and vowed to never
again be impatient, with myself or anyone else.
Once recovery from surgery was behind me, my pace waxed and waned with
each round of chemotherapy and the dreadful exhaustion it incurred. Taking more time physically also meant more
time to think – what had happened, what was happening. Some walks left me crying, not from pain, but from
uncertainty.
Given that progression, my 2016 attempt
to walk a half marathon with no preparation now seems insane, but I was curious. I needed to know if my strength and stamina
had limits, and if my new normal was really something I could live with. On the day of that event I was less worried
about finishing and more nervous about logistics. For one, I had never
emptied my ostomy bag in a port-a-potty. It was hard enough to do that at
home, sitting askew, using hair clips to keep my clothes up and out of the
way. Doing the same in a small, strange, dark place made me
nervous. Maybe my digestion will be slow, I thought the morning of, and I
won't have to worry about it. Even more distressing was the possibility
of some emergency and needing to change the bag entirely; that would not work
out. That would mean aborting the walk all together, wherever I
was. Finishing and getting to a safe, ostomy-appliance-supporting space
as quickly as I could was my motivation that day.
Thankfully, there was no
emergency, and that day my radiation-stiffened hips made it to the end.
And in the months that followed my strength did return. By the start of
2017 I was nearly my old self. With FitBit
as my witness, I walked at least ten thousand steps every day in January.
I signed up for this year's marathon walk event as soon as registration opened,
this time for the full 26.2 mile distance. I did as much yoga and
strength training as I could before being sidelined by another major surgery in
February (planned this time) to get reconnected and to replace the colostomy with
an ileostomy while the connection healed.
In May, that third and final ostomy was reversed.
Somehow these more recent medical
events were merely inconvenient, not devastating, and come July I was ready to start
training. I was confident. But the
weekend before my first training walk I was revisited by the same kind of
abdominal pain that had brought me to the emergency room two years earlier. Waves of nausea and cramping went from
that’s-a-little-uncomfortable to something-is-very-wrong in a matter of
hours. A frantic page to my surgeon was
returned and I described my symptoms.
Was it food poisoning? Some kind
of blockage?
“Try to wait it out another couple
hours,” my surgeon advised. “If there’s
no improvement, just go to the ER – you’ll be admitted, we’ll do IV fluids and
bowel rest and figure out what’s going on.”
I hung up the call and burst into
tears. Hearing my anguish, my husband
Ryan came into the bedroom, found me curled up and sweating on the bed, and
laid a reassuring hand on my knees, drawn close to my chest in an attempt to
squash the agony in my belly.
“I can’t go through this again,” I
sobbed.
“It’s okay, you’ll be fine, you
just had a scan,” Ryan said. “It was
clear – it can’t be the same problem.”
“It’s some new awful problem!!” I cried.
I did not want to go to the hospital.
I did not want an IV. I did not
want another devastating diagnosis. I wanted
to walk. I shuddered and shook my head. “I can’t do it again. I cannot do it.”
Some limits, I’ve learned, are
more absolute than others. I can no
longer tolerate any pain of unknown origin.
I have hit the cap on the unnatural invasion of my physical self – no
more needles, no more tubes, no more cutting me open or steeping me in toxic chemicals. My psyche cannot handle the vast, massive
universe of unknowns, of the unknown,
that opens up in the single life-altering second it takes to hear the word
“cancer.” Stress, anxiety and depression
nearly unraveled my family, and still lie in wait, pouncing from the shadows with
every unexpected twinge or unusual ache.
And while the emotions are more easily corralled now, and less
crippling, we cannot take any more unpleasant surprises.
I didn’t go to the hospital; in
two days, whatever it was had passed, and my training started on
time. It’s happened again a half dozen
more times since, twice with debilitating pain, and each time I learn what not
to eat or what I need to chew exceedingly, ridiculously well. And now, on-again-off-again partial bowel
obstructions notwithstanding, I am through it.
I was literally taken apart, turned inside out, and put back together
again. The recovery I went through this
year was the last recovery I expect to ever
have to do as a result of surviving cancer. That's the strongest
motivation I've ever known. The finish line at the end of this upcoming
marathon walk feels like the finish line – all my fingers crossed, knock
on all the wood – and afterward, life will move along so normally, it will be
like nothing ever happened.
On that recent half marathon training
walk, my texted pleas for companionship did in fact go unanswered. Out of
breath and shuffling, I glanced at my phone every several seconds, hoping to
see “We're on the way!" or to look up and see them skipping towards
me. As it happened my husband's phone wasn't nearby and he missed my
request. But knowing I might see them any second, and even if I didn't,
knowing they were just up ahead at home was enough to keep me
going. In the end I even managed an extra mile – fourteen all
told. I’ve completed a few more
slightly-more-than-half-marathon distance training walks since, each one longer
than the next, and am now resting up for the big day. I haven’t yet reached my limit.
***********
Erin E.M. Thomas is a musician, mom, wife, nerd,
project manager, evolving political activist, wannabe philanthropist, cancer
survivor, and atheist with Buddhist tendencies.
B.S. degrees in Music and Cognitive Science from the Massachusetts
Institute of Technology and an M.S. in Arts Administration from Boston
University somehow prepared her for a successful career in Information
Technology within the financial services industry. The excruciating minutiae of her cancer story
can be found on her blog at eemthomas.blogspot.com. She currently lives in Arlington, MA with her
husband Ryan, daughter Ava, son Connor, and cats Daschle and Tarrus.
