This post was contributed in response to Jessie Gruman's What I Wish I’d Known Earlier about Cancer Survivorship series about the unique needs and responsibilities of people who have been diagnosed and treated for cancer.
The word "survivor" is a huge hot button for my older son, Nate, who was diagnosed with acute lymphocytic leukemia (ALL) at the age of not-quite-three. When he was between high school and college, road tripping around the country and then at home getting himself into trouble with drugs, risky behavior, etc., we sent him to a therapist. Nate was angry, surly, unhealthy – while some might say this was typical teenage angst, I always felt it was much more than that.
He saw this therapist about five times; the last time was about two days before he was heading up to Olympia, Washington to attend Evergreen State College. He had postponed the fall quarter saying he wasn't ready, but by November, he realized that he had to get away from home if he wanted to live life. At his last visit, the therapist told Nate he had survivor syndrome. Nate had always resisted therapy because he didn't want to be labeled, and now he was.
Thinking about what I wish I had known about cancer survivorship brings back memories of how angry Nate was to, as he put it, “have this label dumped on him". What was he supposed to do with it? He spent years grappling with the label, moving from resolute anger at the therapist to really looking at what surviving cancer meant to him. He also grappled with why he survived and other kids around him did not.
As for survivorship planning, as a mother, I think it is not just brilliant and valuable, but is a critical part of cancer care. I spent many years reading about secondary cancer stories, knowing that Nate could be facing this again. As a young cancer survivor, he spent the years following chemotherapy vulnerable to any cold or flu that walked in the door. As a teenager and young adult, he was still vulnerable, but spent those years defying it. He had a cough and cold so often that I began to believe he thought it was normal to always be a little sick. If he had had the guidance and the will (big issue), a survivorship plan could have really helped him. Plus, if survivorship was something defined and integrated into his care as soon as his chemotherapy ended, he might not have been so physically vulnerable during his young adult years.
The plan should have included emotional treatment in the form of therapy, which is the one big regret I have from Nate's illness. We were so focused on saving his life and getting him physically healthy that we didn't think to bring therapy into the process for him in a full way. We all went to a family group and he went to Camp Okizu for years (a cancer summer camp that was actually the best therapy ever), but I think he needed more. Therapy during and for some time afterwards could have really helped him.
Nate is now 24 and really becoming a man. Now I think he does see himself as a survivor in a positive, lucky-to-be-alive way. His view and value of life has deepened, and he can talk your ear off about all of the things he wants to do in the future. At this point, I think he would be open to learning about, and potentially embracing, some type of plan that would help him understand his risks and how to care for himself as a cancer survivor.
The following is a poem Nate wrote when he was 19 – 14 years post treatment – which tells me that he has had to do a lot of processing on his own.
For One Small Boy
By Nate Smith
The indiscriminate hurricane sickness
doesn’t give a damn where you built your cities
sometimes it creeps slowly across the horizon
with lightning flashes
and hacking coughs
giving the radio men time to issue the warning:
“Better bolt your doors
and board your windows
this one’s gonna be hell!”
Sometimes it comes on a rush of foul air
and faces of all ages
wake in the night
stare with the same fearful innocence
hypnotized by the spiral of storm.
First the rain saturates the bones
and the wind whips the street trash into tornados
with gleaming teeth – to make you forget
your heart ever pumped warm blood –
through which it hisses gleefully
of the worse still to come.
A car skids out on the oil slick
streets. Some poor fool
desperate to reach a loved one
before the roof caves in.
He slides thirty feet sideways
into a telephone pole.
Blood trickles from tangled steel
live wires trash and spark
it is dark.
Light whatever candles you got
and tend them carefully
lest they get blown out,
you’re not gettin those stars back
Meteoric hail falls
rattling death in the streets
and punching holes in parked cars
like buckshot into tin cans.
When the sun passes by
it only defines between
pale grey sky
and darker still
cracked shells of broken buildings
and it is still roaring with rain
and you are utterly alone
absorbing the unrecognizable wasteland
in your yellow skin
with a trickling nose bleed
while the water rises.
You can only pray the levees hold
pray the family farm doesn’t flood
pray the library keeps all the best books on the top shelves
as pockmarked cars, splintered furniture, and face down corpses
who you pray not to know
float along the river
where you used to bus to school
you can try your best to get the rest you need
but rain like pattering feet of demons
runs pell mell across the roof
above your pale green sheeted bed
and out of sleeplessness you pick at the clear tape
holding your arm to the IV drip
if you’re still there listening
you can hear gaps between the thunder claps
getting further apart
you can hear the rain lessen
and watch the water drain
and you can pull out every needle and tube
and not even bother with band-aids
and ditch that humiliating gown
for regular clothes
to cover up the scars
and you can stand barefoot
in the layer of mud now covering the sidewalks
of the rioting city
only watch out for broken glass.
The sun begs blood into your hollow cheeks.
The soccer field is a marsh
and the bodies on it must be buried
but the grass will grow back
just like your hair
and the dead will have their dirge.
Three houses north
a woman’s roof was torn off
and she was pelted to death
with everything the wind carried
from matchsticks to mail boxes.
Six to the south
a man gave up naked in the dark
and shot himself through the head
Eight blocks west,
closer to the water,
entire families drowned in their homes.
Good friends across town
had a stop sign thrown through their bedroom window.
One small boy
bid his family goodbye
and strode out into the storms open arms
like he was going to the candy store –
but the city needs rebuilding
as the dead need remembering
wild in your head
you make the impossible demand to know:
why were they to die
and I to live?