Superpatient in Training – The Philly Chronicles – Trek 7

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How much long needles going into your non-numbed groin lymph nodes should hurt on a scale of 1 to 10 is negotiable. It does hurt. But mainly it vexes.

First, there is the waiting, as you lie exposed on the stretcher as the team assembles. Always, vaccine number one is being held in the air as the cast gathers. Why not hidden, nestled in its cooler with its sister? I don’t know. Then there is the small talk as I move my head in odd patterns to avoid seeing the needle. I was trying not to be obvious but by vaccine round four everyone knows I hate seeing the needle, not that that keeps it any more hidden. The radiologist is always the last to show, the lights go out and everyone stares at the ultra sound screen. Half the cast watches silently as the doctors negotiate over possible lymph nodes to target. Sometimes it takes a while for a lymph node even to be found. They look at the screen positioned across my belly, a screen that somehow lets them know where to insert the needle into my body below. Everyone judges the accuracy in this mapping negotiation by staring at the needles journey on the monitor – many opinions, one doctor with the needle, though. It is not a fast process. Eventually there is agreement that we are in a node and then, phew, we are done on that side.

It is important not to flinch because then we need to start over and I am a flincher! I try different tricks to anticipate the modest discomforts, to avoid flinching. Closing my eyes does not work. Imagining me on a beach in Maui does not work. Staring at the screen, talking myself through the needles arrival with its small allocation of pain helps. As does reminding myself that this does not need to please me.

There is an expression in Italian I have always loved, “Non mi piace.” It does not please me. I have found it a useful phrase over the years mainly for self-calming as compared to effective communication.

In 1989 I was on a work brigade to Portland’s sister city in Nicaragua, Corinto. The US was at war with Nicaragua. It might have fallen into that category of secret, dirty wars that many in the public miss, but regardless American taxpayers were funding the bombs that were falling. The brigade was to honor the memory of Ben Linder, a young Portland engineer recently assassinated while installing a water system for a small Nicaraguan village. Corinto is a port city sitting on a lovely stretch of open beach and ocean. At the time, all the fishing boats listed uselessly in the harbor. War damage.

The setting should have been enticing but it was not. We were there to work on the hospital. The open-air structure was well worn before the struggles of war. In the initial tour, I appraised the scene and decided I did not want to end up a patient here. The once sophisticated sterilizing equipment was now hauled to an outside fire pit. The surgeon talked about the daily power outages and what that meant with no back up generators and a patient open on the table. Chickens walked inside and out.

I had prepped for the anticipated vigor’s of the brigade by building up my physical strength, not learning Spanish – I had a naïve assumption that my knowledge of Italian would carry me. It did not. My host family was a mother and daughter. They welcomed me into their home, vacating one bed as they shared the other for my visit. A bowl was placed on a stool in the middle of the bedroom at night for toileting. The bedroom door was then locked barring us exit to the courtyard outhouse.

I was far too shy let alone confused by the bowl on the stool to use it. And the outhouse was far from enticing even if it was not an option at night. To boot, there was an incredible lack of potable water in the city due to a bomb hitting the cities main supply line. I decreased my drinking to solve all problems at once. Each day I felt a little less well. One day I felt awful and came down from the roof we were working on to collapse in the shade. It was the kids who realized I was seriously ill as they kept touching me and saying, “caldo.” They alerted adults who moved me into the doctor’s lounge for immediate treatment. My temperature was 105 and I was in preliminary kidney failure because I was not, in fact, drinking enough.

But when they came at me with an IV I remembered my resolution not to need treatment in this hospital but the only words that came to me were, “Non mi piace.” It’s a great phrase but not for communication outside of Italy. After a few days of fluids I was fine and learned a few more tips of self-care even in a war zone.

Back in the United States in 2013, far from any war zone, vaccine round four happened the first week of August. A friend had made me a pair of superman underwear for this round. It seemed borrowing some superpowers might better get me through this process. Vaccine four, I was ready. Two women get vaccinated each day and I had warned my partner of my plan at chemo the day before. She parents a toddler and so was easily able to pledge to wear her own pair because, in her house, every day, they are all matching superheroes! So me in superman undies, she in her superhero of the day, were ready for the vaccine process. Both of us agreed after it was our easiest round of vaccines yet. And that pleases me no end.

Superpatient Panties

Superpatient Panties

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14 responses »

  1. Dearest dearest Marcy, I just love your posts because I feel just a tiny bit of what you are feeling. I wish it could be more. I wish I could bear some of your pain for you. This particular post should be submitted to the Sun Magazine. They would accept it on its literary merits as well as its powerful human experience. I love the Sun. If you haven’t seen it, I’m pretty sure you would love it too. XO, Kathy

    • All of our lives are filled with pain and struggle and joy and more joy – it’s about keeping perspective. I hate that in my quest for sharing this journey, I might make it seem worse than it is. But really, when is a needle ever fun? Congrats for the blue ribbon at the county fair! xoxo

  2. Wow Marcy. I continued to be most impressed with your tenacity and courage, but most of all your positive spirit.
    You are a power to be reckoned with and I hope you continued persevere!
    Yvonne.

  3. tu mi piace muchisimas. Love you Marcy, and the way you get me laughing and crying and feeling strong and hopeful all at the same time. L’Chaim my friend, with love

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