Digital F.A.P. Poetry
—Originally written in April 2019 after a phone call with my father
Poem no. 1
My father says that I am a fine line__________________
that I can't be somewhere without water
without a bathroom
without a hospital
and should wear a sign that says Fragile
If I
filter
and
fragment myself
enough
maybe I
can
become a painting--
or a
Renaissance puzzle
piece?
Put one on your leg and one on your back
so people can read and say "this girl is fragile"
Like a box, when Fragile is there for people to know to not mishandle or break it
when she is traveling
We cannot fight the elements so we gotta keep low
You should not travel
They wouldn't know how to treat you
in Europe in the hospital
They'll put you in the corridoio
Do you know what that is?
A hallway
/ /
Yes
If I had a friend up there, my dad says,
I'd ask them, Can you check on Domenica?
I want to disappear from my problems;
It would be a coward to disappear.
The mainstay of management of F.A,P. is surgical removal of the large bowel as it is still not possible to manage the large number of adenomas endoscopically. This approach makes a dramatic difference to life expectancy. This still does not reach the life expectancy of the general population, due mainly to the problems of duodenal and periampullary carcinoma, desmoid disease, perioperative mortality, and rare cases of colorectal cancer. This emphasizes the importance of tailored screening, treatment and surveillance. “Surgical Treatment in Familial Adenomatous Polyposis.” Tudyka & Clark, St. Marks Hospital (2012).
"Aging is an extraordinary process where you become the person you always should have been." —David Bowie
I went to urgent care the other day due to a sinus infection (April 2019). In giving my medical history to the nurse, which turned into telling my miracle story of how my son saved my life and mentioning the issues I have with the disease and condition, she listened and concluded, "I'd never know looking at you that you have this illness." I said thank you—inside chalking another weird line on the board of irony. Such a statement can make one feel alienated and wonder, how is one supposed to look? I am glad I look (and feel) somewhat healthy now. I am glad I do not look like those moments when things came to a head or that I don't look like what the inside of my stomach looks like. I shudder at what the inside of my colon looked like. I don't want to go back there, even though people with my illness know the anxiety that comes with the threat of further organ removal, as we read from others on the f.a.p. forum. So many different prognoses out there...
Looks can be deceiving: my illness had almost gone undetected because I always looked so healthy. What about you? Have you had a colonoscopy?
And if ever you have a health scare, make sure you go see the experts. Smaller hospitals (that is, ones that are not a major cancer center) can—and have too often—really messed things up. There are too many stories out there from patients and expert doctors. There shouldn't be such a huge difference in what doctors know and do, but there is.
Because I'm celebrating the third anniversary of my colectomy this month (April 2019), I would like to say here's to those with invisible illnesses, with disabilities, chronic conditions, diseases, genetic mutations, impending surgeries and recoveries, online research and scopes, reports and readings, which alternately give hope and cause for worry. Here's to those who need all the resources and energy they have. Here's to the doctors who have to admit they don't have all the answers and work so hard to find them—or to do the best by the patient that they can. Here's to the nightshift nurse who works long hours, but steadily and, through everyone's nerves, tries to assist in putting a tube down someone's nose when she seems close to death. Here's to those who know what sickness looks and feels like on the hospital floors and those who know it's not something anybody wants to really see. God bless those who nurse others. And deepest gratitude for all who have walked the 14th floor at Memorial Sloan Kettering on York avenue, from the slow, slow steps to those that need to be ever so swift in a case of emergency.
Juanito and Rose at MSK on the 14th floor, you were the brightest, lightest, cheeriest helping souls, while others were also so present and helpful.
My sister and support system during my colectomy—on top
Of all the love and support so graciously given, the best nurse who saw me through that April was my dear sister Candi who was—and is—remarkably practical and strong. Special thanks to my extremely skilled surgeon at Memorial Sloan Kettering and to all of the f.a.p. forum warriors who understand and are overwhelmed but practical and giving.
Poem no. 2
Lines can do so much; they trace the pulses
in the spaces where there is nothing.
Movements cause hues to surge like an ocean wave
onto the sand, onto the canvas,
like a long-lost visitor.
Colors reflect water, earth, and fire,
driving the soul to play in the forest.
The glow that comes in the aftermath
is the knowing that the creatures were real
and that they come to meet us again as we mature.
~Krishna Priya
