PET Scans and Other Acronyms

This poem, though inspired by some disease that requires I become prostrate to the big grayish pallor of the gaping mouths of machines, represents otherwise the first of several metastatic nods to national poetry month. And, understandably very much inspired by my own internal struggles: doubts in the treatments, one that causes chemo brain, causes degradation of my body, causes me to want to seek out other therapies.

Friday makes a bad choice for any kind of diagnostic test when you’re held down by a terminal disease by the hands and feet. Like the iconic Gulliver’s Travels mind’s eye view of the giant captured on the island of little people, tied down with stakes and rope. His captors run around laughing and taunting their flannel clad prize man, kicking at the sand and pushing his chest against the ropes.

Our scan du jour, a PET Scan with radioactive contrast markers. My results, if I’m unlucky and Dr. B doesn’t get them over the weekend and send an email so I needn’t stress, will be delivered Monday at my 4:30 during oncologist appointment. Standing up for what’s only right to not have weekends for a three-month stint, my dues were paid in full and in advance. I wanted lunches and chair massages and the occasional pedicure! Weekend people get graham crackers and little kid size boxes of apple juice from concentrate. Yuck. Sugar for my pretty, bad your little cat too!?!

After my new improved appointment schedule of Monday’s around 1:00 pm for labs and onto a sit under the drip into my port whilst under the spell of Benadryl, Pepcid, and steroids. I awaken usually not feeling like I slept but merely dreamed instead that I slept. Last weekend the male nurses cheered loudly for their March madness team and the others had been called into a staff meeting. The nurse, the most competent thus far, who put my chemo in my port was not the nurse I woke up joking to, and she said nothing. I’m beginning to feel like an imposition to the lifestyle of many of these people degreed in caregiving.

God knows if my oncologist finds out I was left unattended, I think he may become annoyed and even angry. He’d come to the infusion center like a parent checking in on a child in daycare and found I’d not been given the hours 1:1 nurse coverage since I stopped breathing during the initial Taxol drip at my first appointment. He saw me alone and he could have had this nurse by the nape of the neck the way she tilted her head lightly forward as he walked behind her, the silence of the others palpable. She sat down and he said he wanted me covered specifically and no excuse. She sat for a pitiful 15 minutes, handed me the call button and motioned to press it.

I called after her to say, umm, hello? My name is Ilene not “you” or nothing at all, and you or someone in your position to resuscitate me should this no breathing thing recur should be here not not here. She said she could see me from the desk. And walked away. No one ever did come to insure my respiration continued, not for the last 14 treatments. I’m all weeks on. No weeks off, until May 28th. Then I’m free for a while of the infusion center. I’ll ring a hollow sounding bell. It won’t be the end of treatment. Just the end of this egregious protocol (that’s treatment in cancer speak). The side effects cumulatively build up as my eyebrows, underarm hair, and nasal cilia aren’t getting better. Worse. My exhaustion, my word loss, my general malaise grows day after day, week over week. And still I rise. It hurts some days more than others but I rise.

Now, for something completely different, the poem…

A Scanner, Brightly

Meditating, my elbows inside
Blood draining into my radiant body
Port standing brightly waiting
For an access pass
Checking for sugar upon my lips.
The remaining life of uranium
Available and waiting
Not like on an atoll in the pacific
Yet like in those black and white films
Cringing they watched the blowback
And wonder how the film survived the war.
Then the subtle kindness of
A starched white pillowcase
Holding me like a potato sack.
My arms akimbo to my ears
Sliding in and out of an expensive
Engagement rig dignified enough
I married this disease for life.
And what mystery you present
As you wash over my half-life body
I cannot read your name in the darkness
Behind my eyes I’m sure the stars still
Shine, face down I know the sun still
Rises. But what did it stand for?
P.E.T. me again I don’t recall:

Patience, energy, time
Pain, emptiness, taxing
Pathway, eating, through
Palliative, end of life, treadmill
Parasite, entangled, tornado
Patiently, earmarking, trade offs
Powerful, everyday, trying
Practicing, Eastern, traditions
Potential, ego, transmitter
People, envying, tools
Precious, errant, traits
Prevent, except, today
Perhaps, everyone, took off
Persons, except, those
Souls concerned about no one.

2 thoughts on “PET Scans and Other Acronyms

  1. Dear Ilene –
    I recently had my PET scan and treatment. Good news … cancer hasn’t spread. However, I must continue the treatment plan … with mixed emotions. I am grateful/fortunate to have an oncologist that continues to be an advocate for me (even though I may be trying at times to treat … aways questioning and negotiating). I still continue to fight for quality of life. Even though I look “normal” on the outside.

    I still have hope for a cure of this dreadful disease.

    -Liesl

    1. My next post is about the cure and if it’s even possible given it’s such an individual disease, with rising numbers of new diagnoses. You’re doing great and the weird thing is so many old treatments still seem to permeate the protocols and practices that I wonder when all these new breakthroughs will filter into our treatments. And you have every right to question and advocate for what you want. Your life isn’t negotiable on any terms. Ask and ask again until you’re satisfied and if your gut says otherwise don’t ignore it. I learned the hard way not to do that.
      You rock.
      Love you!
      Ilene

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