February 26, 2010

All cooped up with snow place to go

Has it snowed more this winter than last? I have no way to judge. Since my surgery, December 2, I haven't been out much at all. Since chemo began, I've been afraid of public petrie dishes. Most of the time, I don't notice -- but today, while it snowed and I couldn't go out, I felt like a little kid sick on a snow day -- a do-nothing day that I couldn't fully enjoy.

Instead, my mom was here: we toiled together in the kitchen, making comfort food from scratch. My comfort food -- not something she has ever eaten. I called it mac & cheese day, but neither of us had ever made a white sauce. It takes a village when we attempt domestic competence.

We made two phone calls to consult with my friend who gave me the recipe, my friend who is upstate taking care of her mom, who has also lymphoma. It is, apparently, the disease of the season. Her mom and mine are drinking buddies: she and I think it's cute, we who stay away from the bottle, for reasons too complex to detail here.

This winter, I am ill. Last winter, I met The Artist, with whom I am in love. Our anniversary -- that is, in real life, not via email or telephone, is January 29, a Thursday. I had picked the restaurant, my favorite French bistro not 100 steps from my home. It is where I had auditioned, so to speak, many a real life rendez-vous. La Boite closed suddenly in May last year. All I could think was, I hope I never have to go on another first date.

The Artist is sweet and witty and compassionate, and I am grateful beyond measure that she is in my life. This is a hard patch we are going through: no matter how "garden variety" my cancer may be considered, she is stuck going to work, and tending to me while I am home.

I am tired, and sometimes achy, but the largest part of my physical pain has been healing from the five-inch incision in my chest. Chemo has not, thus far, proved the tribulation that made me so nervous.

A winter snow- and germ-bound in my apartment, however, is making me twitchy. I cannot remember the last period of time I was Wonderland-bound for so many months. Last year, January was Alabama, for my niece's birthday; February, my belated JYA in Buenos Aires; and March, my two weeks down in Mexico.

This year, I travel by taxi to the oncologist, five minutes from my house. Last year the heat was turned low, but this year, it is not. This year, my house is awash in Purell, Kleenex, pain pills, and tranquilizers. The freezer is stocked with food other people have cooked. The Artist makes our dinners, each with a reduction sauce she improvises and that impresses me. My mom's friends, most of whom live outside of Wonderland, send flowers, chocolates, books, skin cream.

Most of my social life, except for The Artist, TBF, and one of The Three Sisters, is conducted via electronic means. Certainly it is the season for Facebook. Alas, it is not the season for great writing, given the limits of my concentration if not any other impediments. It is mostly a time for arts and crafts, and I feel kinship with my 5-year-old neighbor, who received finger paints for her birthday.

I have paint (by numbers), coloring books, crayons, glitter crayons, markers, glitter, modeling and baking clay, and a needlepoint kit. I have also designed my own tiara, courtesy of The Artist's dabbling in the children's crafts department at a local store. She herself paints for real, and creates beautiful photographs. What I hope I do with words, she succeeds with art.

One of the Three Sisters has been down this road before: I am her fourth patient in the chemo wars. She keeps me hydrated and laughing and is great, loving company. We have known each other for 25 years, and we are family. We are better than family: we don't have the built-in stress of childhood competition and don't share buttons installed by the same mother.

Most winters I spend time in bathing suits. Now, I wonder how the sun will affect my scars, and whether my sun days are over. I dress oddly, as if in the throws of menopause: hot, cold, hot, cold: my internal thermostat is askew.

I used to wear flannel nightgowns; now my nighttime attire is improvised layered pajamas. Cotton elasticized-waist pants; a long-sleeved, tunic-length cotton T-shirt; a button-down, flannel shirt worn open to be taken on and off as needed; athletic socks; and a cotton cap, to cover my head. The cap is striped; the shirt is plaid, but mismatched clothing seems symbolic.

As a teenager, per my journals, I hoped my life would look seamless, that it would not be all manner of patchwork. Patchwork, however, is the story of how it goes, never more so than now.

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February 09, 2010

Hairless at home

No one signs up for chemotherapy with any kind of informed consent. Why? Info is given on a need-t0-know basis, while my 5 minutes on Google gave me the questions I needed to ask.

Sure, they tell you about losing your hair -- right on schedule, it came out in tufts. There was enough hair in my wastebasket to build a bird's nest. No one says, this process will take a week or more. You will shed. You will think you are molting. You will be surprised at what hairs remain and which ones detach with ease.

Then, you go to Wigville for the actual wig fitting. Explanations for taping wig to head prove more complicated than my brain can process. On my head, wig feels like an imposter's hair. Name for wig? Cousin It. No gender required. Cousin It's relative is "ittle," a band of hair that requires a cap over it so as not to expose the skull.

I'm told I have a lovely scalp. I'm told Cousin It looks real. Personally, I can't imagine that anyone could have any other response. Just as with new babies, all of them are cute, even the ugly ones. When you are hairless, compliments take on a different slant.

Nausea is commonly mentioned as a side effect, although the question is posed, "are you nauseous?" and proper English calls for, "are you nauseated?" P.S.: One day after chemo does not a clean couple of weeks create. You may not be nauseated the day of or during -- but there's a two-week interval to follow, when any day could be the bad day.

It is, basically, a crap shoot, how each person will react to toxic chemicals "infused" into her body. Your mileage, it seems, may vary. That covers a lot of reactions, but still, what you think when you start and what you conclude after four hours attached to a needle attached to tubing that glides the toxins into your body is unpredictable. Every day is a surprise: some are just days of slow movement; others are filled with queasy hours.

Things I researched; things no one would have otherwise mentioned: peripheral neuropathy, possible mouth sores and strange chemical tastes in mouth. Will chemo slow down the healing of the surgical scars? What foods may I and may I not consume? Do I need someone else to discern the temperature of my bathwater? How germ free do I need to make my house? Should I just shower in Purell and call it a day?

Do I need distilled water for ice cubes? How do I know good white cells from bad ones? In high school, we had to dissect a frog, twice. Why couldn't someone have taught me, say, some human anatomy? Something to do with how our bodies work? Surely we could have passed on the damn frog.

This is not the brave new world I envisioned. It is, however, very much in line with the title of poet M. Wyrebek's book: Be Properly Scared. I read the poems when they were published: the story of M's life from age 16 and her diagnosis onward. She was someone I admired -- talented, pretty, smart, funny -- and her life cut short as the bad cells multiplied and won the battle.

I guess I am lucky: the odds are in my favor. What the exact numbers are, I don't know. Another factoid hidden from the hairless. Chemo is not an adventure for those who need situations clearly delineated. Clues don't get spelled out; clues bite you on the ass, and assume you'll recognize them as answers.

But watch me when I do engage in commerce with clerks who are idiots: I have no time for them, not that I ever did have much patience. What I have now is an answer for, could you wait a few minutes? Not today, not this week. The toxins running through my veins have me in their grip. I am in thrall to what will one day be considered as suitable to cure cancer as mercury once was to cure syphilis.

I pull off my cotton cap, show my scalp, and say, "No. Don't have the time. And unless you have cancer, you won't, don't, can't understand me, so lay off the platitudes." It may seem cruel, but if there is one time in my life when it truly is all about me, this is it. Everyone I know who has been on this cruel dance floor has traced the same choreography.

Lymphoma focuses what is left of the mind in a position sharper than its ever been before. The rest of the brain cells are off on a sojourn somewhere I can't find them. I have to cling to the ones that remain.

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