"Normal"

How am I doing? Thanks so much for asking. I very often feel mildly lousy, sort of like having a touch of the flu, but without clear end in sight. I often have the urge to lie down. I told my officemate that he should not be alarmed to see my feet sticking out from under my desk; I was most probably just taking an impromptu break. On chemo weeks, I take a four-day course of steroids. These make me hyperactive and sometimes weepy and little paranoid. During my third chemo cycle, I upset a friend a great deal by accusing him of ignoring me, which he was not. The steroids also have added seven pounds, mostly around my middle.

Also on chemo week, I develop a sore throat, and sometimes cold sores and tenderness in my gums. I am constipated, a condition that completely and excessively reverses itself the next week. You see, the chemotherapy drugs target rapidly-dividing cells throughout the body, including those in the intestines. My spleen...I'm getting used to my spleen. The swelling is brief, and hardly bothers me any longer.

I am getting shiny bald. The hair loss includes all of my body hair, although I have, to my chagrin, had to shave my legs earlier this week. And, I wouldn't pay for my brazilian bikini wax--entirely too haphazard. Eyebrows still intact, but for how long? My skin heals very slowly, and I'm using bandaids to cover even minor blemishes and cuts.

I had my last period of my life, I believe, about three weeks ago. It arrived a week after the previous one had just finished. When a hot flashes hit, I feel like a human can of Sterno--I envision a nearly invisible blue-white flame is shooting out of the top of my head. If you are a smoker and need a light, just touch your ciggy to my scalp. It's a shame to waste all that heat.

The tumor does seem to be shrinking, and my breast is gently collapsing as it recedes. It's now easy to see how much tissue was eaten up by the thing. I wonder if I'll ever be able to look at myself in the mirror and feel "normal" again.

I don't feel very womanly, that's for sure. Even the little man outside the laundromat who muttered "chiquita" (cute), at me yesterday, couldn't raise my spirits. Perhaps I should view this as a form of chemical satori, or a crucible, where my sexuality is burned off, like dross. I just wish I knew who or what I will be when this is over.

Underground Music

My apologies for the lousy quality of this photo: after my experience at Pitchfork, it seems like I'm incapable of taking a good picture of a person playing a musical instrument. This lady has been rocking out the Jackson Blue Line stop on and off for a few weeks. Sometimes she has friends, sometimes she's solo. She's a talented blues guitarist and vocalist, so if you happen by, drop a couple bucks in her gig bag.

Chemo 4/8

Let me introduce you to my big bag 'o drugs. I have three different anti-nausea medications, one steroid, and one white blood cell booster. The booster, Neulasta, has to be self-injected, and comes encased in a clear plastic guard which locks after injection. This is to prevent accidental pricks to those handling the medical waste, for example. I successfully self-injected after the first two chemo sessions, then made my fatal mistake: I read the instructions.

I've always had an aversion to instructions, one so extreme that it took me over a year to discover all the features of my IPod on my own. I should have followed habit with the Neulasta and continued my intuitive (and correct) injection procedure, but instead I thought I should at least look at the insert that came with the drug. The instructions showed how the sliding guard could be snapped up in place after injection, blocking all access to the used needle. Easy, I thought, absently-mindedly moving it up and down...CLICK. I had locked the guard before using the injection. It's very sturdy-looking, and quite close to the drug receptical...not something a band saw or bolt cutters could probably manage. In addition, the drug is delicate. I was told repeatedly that shaking it would damage the mixture.

I called K, a pharmacist at the specialty drugstore for chemo patients. K is this fast-talking, hyperefficient gay man who I imagine snapping his fingers as he solves all of my problems. Girl! You locked your Neulasta syringe?...no prob! Here's the direct number to a rep at Amgen, just tell him K sent yah! [Snaps!]

So, I actually called the drug company that makes Neulasta and asked them to give me a "one time accomodation" for being a knucklehead, at which point they would give a credit to my drugstore for a new syringe. This is no small matter, since if I didn't get the credit, I would have to pay $150 out-of-pocket for a syringe. After answering a series of "so...how can you be so dumb?" questions from the Amgen rep, I called back K. "I can't be the only person who has ever done this." K reassured me, "no, it happens all the time." Tomorrow I wait for a courier to bring me a new, unlocked syringe.

Chemo was uneventful today. Ativan still rocks. After I went home, I fell asleep and dreamed that I was renting a white clapboard house somewhere on the beach, maybe in Martha's Vineyard or Cape Cod. I was running around in a white bikini getting ready for an old-fashioned clam bake. You're all invited; just close your eyes.

CTA Stories: Don't Do This, Please

Boingboing recently reported on findings by the University of London's Centre for Neuroimaging on how fear is processed in the brain. In the face of immediate danger, processing moves away from the pre-frontal cortex to a more primitive part of the brain, one which controls quick-response survival mechanisms. That may explain why, a couple of New Years ago, I picked up a burning log that had rolled out on the rug, and threw it back into the fireplace. The pre-frontal cortex certainly wasn't engaged then. Fortunately my contact with the log was brief, and I got away with singed, sooty hands.

It may also explain my actions on the Red Line train few years ago. I boarded the train at Fullerton, and the doors were closing. A woman standing on the platform thrust her hand in between the doors to force them open. Instead the doors, which are lined with thick rubber gaskets, closed on her hand. She tried to extract herself, but she was wearing a heavy bracelet that prevented her from doing so. And...the train started to move forward. She screamed. Time seemed frozen. Surely the engineer would see or hear her, I thought, but seconds passed by without the train stopping.

Every door is equipped with an emergency lever, which is round, red, and about the size of a tennis ball. I've heard it referred to as the "cherry." Pulling it down will force the doors open, and at least in theory, the engineer will then stop the train. I was about two or three seats away, but I somehow levitated out and up and yanked the cherry as hard as I could. The doors opened, and the train braked. The woman fell back, and then ran away, perhaps embarrassed at having done something so stupid. I sat back down, the eyes of all of my fellow passengers on me. A few minutes later, an irate engineer walked back to our car. "Who did that?!" I was silent, partially because I was a little rattled, and also because I didn't want a hassle. Nobody else said a word. He finally stalked back to the front cab, and we continued our trip to the Loop.


photo credit: thirdrail

Birthday

Many thanks to those who sent along birthday wishes. It was a good day by any measure: I had a healthy appetite, the love of family and friends, and my beautiful/ugly city under my feet and in my gaze.

At 7:30 in the morning, I met with a friend to walk around the neighborhood and take photographs. Less than six blocks from my home, the north branch of the Chicago river curls under the Belmont Avenue bridge. A sliver of a park lies along the banks, and under the cover of dense trees and brush, two men were there fishing. "They're really biting like crazy!" one said. I asked him what he was catching. "The one I just threw back was a carp, but I've been getting bluegill, bass.."



Later, another friend treated me to a hamburger and ice cream at Margie's Candies. My rootbeer float with chocolate ice cream left me with that wonderful gut-busting fullness of childhood birthdays past.



I gave myself a few hours to recover, and then my husband and I went out for sushi and a movie. My bald head will be swathed in luxury, thanks to his gift of a beautiful Hermès scarf.

Now, onward.

Hot Priest Calendar Casting Call

Calendario Romano is now accepting applicants for its 2009 calendar! So, if you know any hot priests...nah, me neither.

That's because we do not live in the land of hot priests, otherwise known as Rome. When visiting there recently, we not only noted that the cappuccinos were tastier, but so were the clerics. Perhaps it's the proximity to the political center of the Catholic Church, the Vatican. Or, perhaps it's the proximity to an already attractive gene pool. Whatever the reason, priests in Rome are HOT.

Apparently I'm not the only one who has noticed this phenomenon. Thus the creation of the Calendario Romano, twelve months of luscious Our Fathers padded out with fascinating facts about the Vatican, like license plate colors, and the location of the official Vatican pharmacy.

I stumbled on the 2007 calendar at 3 am, in a bookstore on Via Cavour. We had been up most of the night enjoying a 24-hour street festival, tripping over empty Becks bottles, and shopping at the Euro store ("Tutto un Euro!") with scores of fellow bargain hunters, many of whom were cranked out of their skulls on more than just beer. After buying flip flops, remaindered German face cream, a pink bunny sponge, and a guitar-shaped thermometer (that was fun to pack), we still had several Euros burning holes in our fanny packs. Joking--I would never be caught dead wearing a fanny pack. We walked into the neighboring bookstore, and there he was: Father What-A-Waste.

Enjoy.

Bring in the Clowns

A friend who blogs was wondering if it's legit to recycle old material. Why, self-plagiarism is a venerated tradition in the letters! I blogged this previously in Myspace, before essentially abandoning that virtual trailer park:

Long before American institutions like Clarabelle or Ronald McDonald, the venerated art of scaring the bejesus out of little children took shape in circuses across Europe. I submit for your approval, the evil clowns of the continent. Why stick with just four horses for the Apocalypse? Why not use a tiny car?



Nothing makes a child laugh quite like a man with eyes painted on his eyelids, along with some paedophiliac hobo makeup

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Cirque de Soleil meets "A Clockwork Orange"

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I like the monkey guy on the left. Can't even imagine what his real face looks like.

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"Insane" is the new "funny"

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Not so much scary as sad.

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Eats actual human flesh

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Just plain evil

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Give it up for Grock

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Much more, including freaks, dancers, animal acts and carnival ride images are at Circusmusem.nl

Chemo 3/8

I just had my third chemotherapy session of eight. Miracle of miracles: no one vomiting or dry heaving in our earshot, and this time we got a nice private room with a work table. Once again, I found the strength to play Snake on my phone. I then discovered that the default Steven Hawking-like voice commands could be customized to say, for example, "ELEESA EES GRAY-EAT," and "JOE EES THMAAN."

Nurse L was back from vacation. She noted that my birthday was coming up soon. Yes, I told her, and my birthday has shown me the upside of having cancer. Although I still have another year, I was beginning to dread my 50th birthday. Now, when I hit that milestone, especially if I'm cancer-free, I'll celebrate like hell. I'm thinking a bottle of Veuve Clicquot in Paris. That sounds about right.

CTA Stories: Is this a test, and did I pass?

Earlier this week, I was riding the Red Line to the Loop. I took a window seat near the door. A woman sat next to me; she was 30ish, blondish, and had a lot of luggage, some of which directly blocked my exit path. At the next stop, a blind man entered, feeling his way with a long, white cane. He found two empty seats next to the door, and directly kitty-corner to ours. He propped his cane next to him, and took out a braille copy of The National Geographic. It was fascinating to see him skim the raised dots. The movement of his fingers nearly replicated a reader's gaze, pausing to carefully scan items of interest, and brushing past those which didn't quite engage.

My stop, Jackson, was next. I stood and tried to negotiate my way past the woman's carry-on bag. Absorbed in her Blackberry, she swiveled her legs to one side, without standing. That made it extra difficult to get out. I staggered a little and bumped into the blind man's cane, knocking it over. The subway doors opened, which meant I had about 15 seconds to get off the train. I apologized to the man, who I then realized was also deaf. I kneeled down and tried to lift his cane back up, but the tip was stuck under the carry-on bag. While I was trying to do this in time to still make it out of the door, the woman leaned over and said "Excuse me, do you know how to spell 'casket?'" Huh? "Uh...C.A.S...K.E.T." While I was spelling, I managed to right the cane and catch the door just before it closed. "Thanks!"

The New New Look

On Sunday, I shaved my head. Depressed by messy hair loss, I decided that being bald had to be be better. And, I wanted to see the oversized occipital bone that has made it nearly impossible for me to wear most women's hats. It is very impressive, but I don't think it looks out of proportion with the rest of my enormous head. I also have a dent on the top back of my skull, approximately where one of the fontanelles, or soft unclosed spots found on infant skulls, is located. Mom, any idea? If you dropped me on my head, all is forgiven. It would explain a lot of things, actually.





I can't remember what this wig was called, but from now on it will be referred to as "Elisa, Jr." It has too much hair on it, and I think it looks like a freaking wig. But the real problem is that it's August out there, and wigs and Chicago heat and humidity do not mix. I've been wearing a scarf to work, when I'm not sticking my bald head into a colleague's office just for a reaction shriek. Showing up for meetings bald is fun, as well. It really speeds the agenda along.

CTA Stories: Strange Cargo

I've noticed my tales of public transportation fall into discrete categories in my mind, with one incident reminding me of similar. For example, one of my craigslist correspondent's stories about a shell man leaping off the train to escape an angry sucker reminds me of the guy I saw running down the El catwalk to escape the police chasing him on the ground. I'd probably call that category of story "Amazing Escapes" or somesuch. However, my favorite category is Strange Cargo, i.e. people transporting things for which they probably should have rented a handcart, U-Haul or cattle car. I can think of two right away.

A bed. Several years ago, I was riding the north-bound Red Line. At Monroe, five young people carried a bed on to the train. It was an old-fashioned metal hospital bed, with exposed springs. It was a struggle to get it in the door and then wedged down the aisle, and another to get it off again, at Chicago. I have no idea why the conductor didn't stop them.

A tree. On Christmas Eve, I was riding the west-bound Belmont bus when it stopped at Lincoln and picked up three passengers: two little girls, about seven and ten years old, and a four-foot-high Scotch pine. The girls wore the kind of faded, thrift-shop coats of the very poor. I figure that the guys at the lot probably just gave them the tree, or let them "buy" it for a handful of change. The bus driver never said a word, and just smiled and waved them on board. They dragged the tree down the aisle, needles flying everywhere.

I wondered: wasn't there an adult who could have purchased a tree for them? Did they know they needed a tree stand? Did they have decorations? I never asked these questions out loud. The children looked so triumphant, and it seemed wrong to cast doubt on the venture.

photo credit: e. english

Overheard

This was a few years ago, near Halloween. I was sitting on my porch reading as a group of really tough-looking gangster girls wearing MLD* colors walked by.
"Oh RIGHT...like she can AFFORD that many pumpkins!"

*Maniac Latin Disciples

Loss

I'm losing my hair; it's coming out in clumps. After washing my hands, I absent-mindedly swiped a wet hand across my crown, and my fingers were coated with it. "It's just hair," I told myself, but I and my spleen are feeling more metaphoric. It reminded me of other losses, and choices not made, or made carelessly. I was full of September thoughts.

Recently, I've been listening to a recording of a guided meditation called the Metta Bhavana, or cultivation of "Loving-Kindness." Loving-Kindness is, to perhaps oversimplify, compassion, patience, and understanding. In the meditation, the practitioner is asked to imagine wishing wellness, happiness, and freedom from suffering to oneself and to others.

Especially now, it is helpful for me to remember how universal is the experience of suffering. As I rode the train home tonight, I looked at the faces of my fellow passengers. Some were expectant and relaxed, and others careworn and distracted. And, I realized how much company I had (alas) in both my illness and my regrets. My fellow passengers.

Cancer and Vitamin D

In the Everything Gives You Cancer News: Vitamin D deficiency. The results of study are astonishing. I'm taking my supplements. I know, I know...

Most Americans and others are not taking enough vitamin D, a fact that may put them at significant risk for developing cancer, according to a landmark study conducted by Creighton University School of Medicine.

The four-year, randomized study followed 1,179 healthy, postmenopausal women from rural eastern Nebraska.* Participants taking calcium, as well as a quantity of vitamin D3 nearly three times the U.S. government’s Recommended Daily Amount (RDA) for middle-age adults, showed a dramatic 60 percent or greater reduction in cancer risk than women who did not get the vitamin.

More at Creighton University News

FYI, to everyone who has been telling me how wonderful I look: thanks. I felt great until about 6 this evening. Now, like a switch has been thrown, my bones ache, and my spleen, my mysterious little black bile machine, is making itself known. I have six more chemos to go, and can't help but believe that the feeling good times will be overshadowed by the not-feeling-good times. Remember to tell me I look wonderful, even when I look like hell.