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.

NEADed and Blessed

I am NEAD.
Yesterday after visiting with my oncologist at Stanford in San Jose and a week of repressed scanziety – I had a PET CT Scan last Wednesday and let’s just say my perky miss Cancer self was a little crabbed than usual. Dr. B entered the new room in the new facility where I receive the bulk of my oncology services, palliative care, infusions, and psychosocial assistance. He and my other physician enter through sliding doors behind the patient visitor rooms from a bustling scene of nurses, nurse practitioners, technicians, and I imagine a scene from the 1984 movie, Brazil by Terry Gilliam, of which film writer and critic Pauline Kael wrote:

It’s like…a nightmare comedy in which the comedy is just an aspect of the nightmarishness.

An apropos description of waiting to see the progress of stage four cancer, I might add. This time, though, good news. Nothing new, nothing grew and no evidence of active disease, or NEAD. I haven’t heard those words with respect to myself in the three years since my diagnosis. Others have reported NEAD to me on their progress. I put on my happy supportive persona that I drop like an unwanted boxed pre printed drug store Halloween costume, the kind my mother would buy for me when I was seven or eight years old. The kind that left me in tears desperately wanting to make my own instead.

Admittedly jealousy and self pity aren’t unusual emotions to go away from those communications with, at least for me. And I feel selfish for those emotionally shallow responses, which I keep private and away from judgement. If the best we #lifers can get is NED, no evidence of disease, I’m just one letter away at least for today. I am blessed to have access to world class care and the love of professionals, my few friends and the small yet effective support structure I’ve built around me as I might a scaffolding around my fickle health that shifts back and forth between hating my body and giving up to short reprieves to allow me a chance to feel free of the shackles of disease for just a while.

I am certainly blessed.

An Apache Blessing
May the sun bring you new energy by day,
May the moon softly restore you by night,
May the rain wash away your worries,
May the breeze blow new strength into your being.
May you walk gently through the world and know its beauty all the days of your life.

Liesl a sister writer and reader of this blog, shared these inspirationally soothing words and hoped they would help me and others navigating cancer. In this world it’s important to remember some of the dearest gifts bear no financial cost; the dollar value does not equate to the intrinsic value. Regardless of the devastating financial costs of cancer, equally as high are the devastatingly effective cost of truly feeling alive. Words of inspiration alleviate some painfully high costs, such as disappearing friendships or my ability to travel outside of the country on a whim. Although now these seem so massively cheap and unimportant.

Thank you Liesl for sharing this blessing, although you did not ask for any credit for doing so. I still want to thank you for reminding me of why I keep writing: relatable experiences lift the eyes of others facing or looking back on major shifts to our lives, not only Cancer.