Stories from the Infusion Center

A gloomy day and week coming up.  From that long freeze and blue sky of last week, we’re now back to typical Northwest grayness and rain, which makes skiers happy because it means snow in the mountains.

Yesterday’s ice and snow had me skiing (figuratively) through the morning much like the beginner I am — frantically trying to stay upright at high speed while the ground slips out and away from me. My daughter thought she had to be at school early and so my husband dropped her off on his way to work. Turns out the weather brought a 2-hour delay at school so I had to fetch her and bring her back. My son was home with a cold, my household assistant was running late, and when it came the real time to take my daughter in, the repairman who’d come to fix the neighbor’s furnace was blocking the driveway, fearing to move forward because his van was sliding downhill on the ice, getting no traction backward to get off it. (I’m reminded of lyrics from a Jethro Tull song:  “Skating away, skating away, skating away on the thin ice of new day….”) By contrast to the events at home, the infusion center, where I arrived almost an hour late, was an oasis of tranquility.

The hummingbirds continue their regular visits, though a hummingbird in the snow appears incongruous to this Midwesterner, where all hummingbirds vacate for the freeze. I discovered that hummingbird food doesn’t freeze, but does make a nice sugary slush. Of course we’ve had to name the two new ones: Tinkerbell and Flip Flop.  This morning, I’m watching another, stranger bird — a float plane — doing low figure 8s over the bay.  Fascinating, but not nearly as gracefuI as Tinkerbell.

This week’s white count, 6.5; hemoglobin, continuing its climb, at 9.4. After the initial burning sensation in my hands last week, there seems to be little neuropathy, but my nails are more spotted and discolored so I’m trying to protect them.  Two more rounds of Taxol to go.

The Popsicle Report: So as I’m settling in to my pod, glad to be able to just sit and breathe, I notice the man opposite me. He is my compatriot — bald (perhaps by choice since he also has a mustache), fingers in pans of ice water, iPod buds tucked into his ears. And on his feet, over his own white socks, he has a second pair of white socks encasing packs of ice. He said that his first series of chemotherapy (another veteran!) bothered his toenails so this time he was trying ice on his feet too. His tall, dark-haired wife was folded into the chair beside him quietly reading. I went off to get my usual “appetizers” — green tea and a Popsicle (blueberry lemon again). Shortly thereafter, the man’s wife left the pod and returned in a moment with a Popsicle for her husband (strawberry orange).  He said when he saw mine, he thought it would be a good idea. I sure can’t argue with that.

My nurse for the day was Therese, a Swiss woman who has worked at the center for 10 years. She is just one of the many nurses at the center, and all are heartening examples of how serious illness can get incorporated into life without dragging you down. These nurses choose to work among seriously ill patients every day. Therese did admit that it sometimes is hard to watch what happens to patients (the nurses compensate with a lot of black humor during break periods), but she said it is a privilege for her to help each patient along the path, no matter which way it leads. So while they work and educate patients about drugs and side effects, they also talk about everyday things: which is better for roasting turkeys, a regular oven or an electric roaster?  They wear smocks adorned with flowers, butterflies, Disney characters and even Betty Boop.  And when a patient finishes chemo, they gather, clap and sing, much like waiters at a restaurant attending to a birthday guest (though none plays the harmonica), a modified version of the 12 days of Christmas (“two needles poking…”).

Can’t wait for my turn to hear them sing.

This week, as she was working with me in her smock covered with polar bears, Therese turned to the small woman seated in the chair next to mine and spoke to her in German.  I’d seen this woman several times before, in her colorful outfits and fuzzy pink-and-purple hat. Today she wore the hat again, with a yellow T-shirt and a leopard-print scarf wrapped around her neck.  She sat in her full makeup and large glasses, quickly crocheting a bright yellow blanket that was spread across her lap. I decided to forego listening to my iPod in lieu of a conversation with her.

Uta had come to the U.S. from Germany after marrying an American military man. Her husband, John, came and went from the pod as Uta’s infusion took place.  He was a short stocky man, clad in one of those signature black baseball caps embroidered with “U.S. Veteran” and “Vietnam” and he had adorned it with color bars, several American flag pins and one pin of the flag of Germany. Several more flag pins were attached to his vest. He was chatty, referred to himself as a “Warshegonian” in origin, and entered and departed our conversation in the same way he exited and entered the pod frequently.

Over the years in her new country, Uta taught herself English, raised 2 children, worked as a nurse’s aid, ran a restaurant, taught German, and cleaned houses (5 a day at the time she was diagnosed). She has been coming for infusions for 10 years for chronic leukemia, which was discovered by accident when she tried to donate bone marrow at the age of 50. Though her treatments have been more intense in the past, she now comes once a month to the infusion center.

Our conversation ranged across many topics: German food (how to make a good torte and a spinach sauce, and the advantage of a breadmaker to knead dough when you no longer have the strength to do so), how women have harder lives than men (John nodded vigorously at this comment) but she wouldn’t want to be a man. Men may know more but women understand more (John nodded vigorously again). We talked about how it is good to be small (she’s no bigger than I), and I told her a comment someone made to me once upon a time: Little people are like chihuahuas; we make a lot of noise because we’re afraid we’ll get stepped on. She thinks the tradition of naming sons after fathers ridiculous. John agreed that it’s a problem being named after his father. The boy feels he either has to live up to or totally deviate from his dad’s performance to carve out an identity for himself.  But that didn’t stop John from naming his own son after himself. And his grandson is now John the fourth.

Japanese do not have this custom of naming sons after fathers, though they do sometimes number their sons.  Ichiro, a common male name in Japan, is known especially here because of the star player for the Seattle Mariners. But the name Ichiro actually means son number 1.  When my son was born, my former boss, who knows the customs of Japan, teased me that we should name him after his father, with the “junior” appendage.  Well, we know how Indiana Jones took to that idea.

Uta and John brought to mind the neighbors I had when I was teaching down in Laredo, Texas, many years ago. Mario was a Mexican-American man who had served in the Special Forces in Vietnam. (He proudly showed me a map of these operations which were  emblazoned on a black T-shirt he wore one day.) His wife Inge and he had met in Germany when they were both working as spies, he for the Americans, she for the Germans. They both liked to tell me their stories, Mario about military service, Inge about her views of life. She recommended that, if I marry, I choose a man who is good looking, makes good money and has hair.  In her opinion, those features were the only things that make up for the trouble they cause. She took pity on me, a single woman living alone, grading essays late into the evenings, and cooked German food for me. (Though I am of German descent I’d never had sauerbraten before.) In trade I looked after their parrot when they went out of town.

But back to the days at hand.

I’m still poking around on the Web for answers to my questions, but spend less time there because the information becomes repetitive (and discouraging) and there’s nothing new for my situation, though there are some promising agents — PARP inhibitors and two types of growth factors — being tested. I did find an article I should have read when it was published, back in 2007, about dense tissue being a risk factor for breast cancer: http://health.usnews.com/usnews/health/articles/070204/12breast.htm.

Like the woman described in this article, I wish I’d known about the implications of dense tissue sooner. I might have pushed for different screening tests, kept a closer watch. This article appeared 2 years ago, but dense tissue still doesn’t show up on those risk factor lists we see today.

At breakfast on Sunday, my son asked the rest of us what we dreamed about the night before. No one else could remember, but I had dreamt that, on the upcoming trip to visit family for Christmas, no one wanted to be in the same room with me because of my bald head (which is not so bald anymore but resembles a newborn’s with faint, fuzzy hair of indistinguishable color). Then I recalled: we’d watched Rudolph the Red-Nosed Reindeer on TV the previous night. Perhaps I was empathizing with Rudolph, fearing no one would let me play reindeer games.

But in the spirit of Christmas (and fundraising), here’s an idea for those billiard-playing aficionados on your gift list who really do have everything. By purchasing it, you can also support research for triple-negative breast cancer: http://www.shopmcdermottcue.com/McDermott/M88B.html.  Pool cues. Now this is corporate sponsorship I can get excited about. Don’t mind the price; shipping is free!

I’ve attached a few more photos. Despite all my talk about hair and baldness (the only obvious outward sign of my current experience), I’m not one to think my hair is my identity. But I have discovered that its loss opens up an interest in playing with identity and disguise.

In this first photo, taken last summer, I tried out the military look.

Here, like Uta, I am disguised as a colorful fuzzy gumdrop.

Besides my fuzzy head, this is the hat my daughter likes to pet.

Here is the fashion hummingbirds prefer.  This is the scarf that prompted the hummingbird attack last summer.

And here, I’m a Muslim on her way to iHop.

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