Pressure's Off

Thirty days out from my last round of chemo, my main problem now is very low blood pressure, a condition that leaves me limp like a handkerchief and for which there is no medical treatment. My home remedy is to follow the Supreme Court hearings on the Affordable Care Act. Reading about some of the absurdities transpiring there must be worth a BP boost of at least a few points, I figure.

Sting

Here's another passage from The Hobbit, this one sounding as though it refers directly to chemotherapy:

     "Don't stray off the track!--if you do, it is a thousand to one you will never find it again and never get out of Mirkwood; and then I don't suppose I, or anyone else, will ever see you again."
     "Do we really have to go through?" groaned the hobbit.
     "Yes, you do!" said the wizard, "if you want to get to the other side."

And here's one more, which represents nicely the triumphant feeling of the patient who has successfully finished treatment:

     There was the usual dim grey light of the forest-day about him when he came to his senses. The spider lay dead beside him, and his sword-blade was stained black. Somehow the killing of the giant spider . . . made a great difference to Mr. Baggins. He felt a different person, and much fiercer and bolder in spite of an empty stomach, as he wiped his sword on the grass and put it back into its sheath.
     "I will give you a name," he said to it, "and I shall call you Sting."

"Bother burgling and everything to do with it!"

I'm reading The Hobbit for the 10,000th time, because it constitutes a kind of literary comfort food. It makes a wonderful allegory for most any unpleasant adventure one could have, including the medical kind. Here's a bit of dialogue from the book that sounds to me exactly like the kind of advice I always get from doctors:
"Now scuttle off and come back quick if you can. If you can't, hoot twice like a barn-owl and once like a screech-owl, and we will do what we can."

Marching Forth

The template for the March Fourth Marching Band could, I suppose, be said to be the marching band of high school and college tradition. When you see March Fourth in action, you recognize certain elements: ornamental headgear; two-toned, button-down jackets and matching pants; batons; percussion and brass in great numbers; team spirit.

Yet March Fourth is sort of a marching band on acid. The 23-member ensemble travels the world in a Merry Prankster-ish bus named Razzle Dazzle. Its sound is as much klezmer as John Philip Sousa; in its costuming and choreography I see a little Vaudeville, a little of the Jazz Age, a little Sergeant Pepper's. Where a traditional marching band moves in formation, March Fourth has stiltwalkers striding hither and thither among its rambunctious fans, hoisting up children, dancing, performing short comic skits. Where a traditional marching band places an emphasis on uniformity, March Fourth's presentation is ad-libbed and libertarian. Traditional marching bands dress their ranks and cover down their files, while March Fourth performers are often in something of a state of quasi-dress and un-cover, with fishnets as common as pith helmets. A traditional marching band, for all its color and volume, is regimented, while the carnivalesque, improvisational March Fourth seems barely contained within a “corps”: it's a military-style band that has exploded, leaving the air a-flutter with confetti and sparkles.

Rick and I are lucky not only to count ourselves among March Fourth's fans, but to have a friend in the band, and a few weekends ago we were gifted a pair of tickets to the band's show (on March 4^th; when else?) as a chemo-is-over celebration. We attended the matinee (the night show was past our bedtime) among the crazy angles, “floating” mechanical dance floor and painted plaster faces of Portland's famous Crystal Ballroom. We sat in the balcony with (we suspect) moms and pops of the performers. This daytime show included a cameo by budding musicians who had attended a March Fourth summer band camp for teenagers last year, as well as the usual dizzying retinue of hula hoop artists, giant human marionettes and dancers. The emphasis of the circus acts is on whimsy and exuberance rather than acrobatic virtuosity, but make no mistake: the musicians are top-notch, and their sound—comprised entirely of drums, horns and electric guitars—is like nothing else you've ever heard. March Fourth describes its own output as “a full-blown big-stage brass-rock-funk assault peppered with moments of swing, jazz, bollywood, ska and metal,” if you can grok that.

I am filled with wonder at the spectacle, and have many questions for the band, like: how does one compose music for such an ensemble? How are decisions made? (Not, I suspect, by dictatorial fiat of a band leader—yet surely not by consensus democracy, either—with 23 members?) Do you ship Razzle Dazzle to Europe when you play there? And most of all, where do I sign up for summer band camp for 47-year-olds?

At any rate, our getting to be present in the audience that day was gift enough—so I was flabbergasted to learn that our friend in the band had composed a song in my honor, which debuted then and there. This is surely the only time anyone has ever written a piece of music for me—and what piece it is! The tune is called “Janjar.” Our friend, Taylor Aglipay, was wearing a pink sleeveless cowboy shirt for the occasion, along with an enormous piece of headgear fashioned—I am not making this up—from the hair of a goat in Azerbaijan. Evidently the hat still smells faintly goaty.

www.marchfourthmarchingband.com

A Traveling Companion

My friend Dvora uses scrap fabric to make stuffed animals she calls Binkies. Usually she makes them for foster children, but she sewed one for me. It has very soft fur, wonderful flower-button eyes and red tufts of yarn for ears.

I suppose in a sense all cancer patients are foster children. We are turned out of the bodies we've always inhabited, and we are made to live in new ones. We are entirely at the mercy of The System, which might treat us kindly, or not. The past, which--whatever it was like, was, after all, the only life we knew--is seen in a new and distinctly unfriendly light: why is this bad thing happening to me? Was it something I did? Then, too, we are afraid to attach to strongly to any particular vision of the future.

Under such circumstances, a Binky is a welcome traveling companion. Mine is quite pettable, and its bean-bag body sufficiently floppy that it would mold to my face if I wanted to sleep on it. If it came to that, I could probably suck on its tufted ears, too, though I probably won't. I do have to remain somewhat germ-conscious.

A Fearful Symmetry

Apparently I prefer my life events to be symmetrical, for my last round of chemo ended the way my first did--with a trip to the E.R.

Monday I was running a fever, which sounds an alarm because if you're neutropenic you can get very sick very fast. So off we went. Three blood draws, a urine test, a chest X-Ray and several geologic eras later they hadn't found much of anything wrong with me and they sent me home.

When we left the hospital at 1 a.m., it was snowing.

The Nursing Staff

Until this last round of chemo I did not fully understand what profoundly lousy nurses cats make.

It's not just that they won't refill your water bottle for you or nudge up the temperature on your hot pad. It's not even that they stand at the end of the bed, hollering, as though you, the sick patient, are to be castigated for not leaving your pager on.

It's that they revel in your helplessness. What fine furniture you make in your weakened state! You hardly move, yet still emit heat! What darling little bottles of pills you've left on the bedside stand, to be knocked off and rolled under the bed with a gleeful paw! If they lick your wan brow, it's not to comfort you, but because your sweat has such an interesting tang just now. And they know you will not so much as squeak when they make a mighty leap from the windowsill onto this handy outcropping that is your head.

When you finally drift off--should they decide to allow you to drift off--they will break into the liquor cabinet and hack the V-Chip so they can watch porn on cable.

Never, ever leave your sick loved ones under the care of the cats.

Another Hair Out of Place

My eyelashes are down to about 10% of their original load, a condition that gives my face a vaguely extraterrestrial appearance. Having 10% of my original eyebrows turns out to be adequate, although I appear to have moved into a different demographic category, that of Women Who Tweeze. I'm happy to report that I haven't moved into the demographic category of Women Who Tweeze Off All Their Eyebrows And Then Draw Them Back On With A Pencil. That's a cultural practice that has always baffled me.

Round Six of Six

I am ecstatic to report that the last of the bags of poison has been infused into my superior vena cava. I am finished with chemotherapy for the foreseeable future.

Today's won't be my last trip to the chemo ward (which has the disarming name "Infusion Suite," as though it were some kind of restful, fragrant tea house). I'll be there again tomorrow to get my usual post-treatment shot of Neulasta, a drug that boosts my white blood cell count. And I'll be returning every couple months for a booster dose of one of the medications, though thankfully not one of the ones with evil side effects. Anyway, the nurses were so great I'll be glad to visit them from time to time.

Because the effects of chemotherapy drugs are cumulative, each round is a little harder last. Round Five was not fun, and I woke up this morning dreading the coming weeks, although dread was weirdly combined with a great eagerness to get on with it and get it done--a kind of Senioritis. My friend Dvora says that when such difficult feelings are dogging her, she says to them, "Well, all right, then, Terror and Dread; get your shoes on. We have someplace to be."

Dvora spent the day with me, as she has for all six rounds, entertaining me with Edward Gorey pop-up books, original works of art, and her hilarious gallows humor (representative sample: fantasy of turning to a glum stranger in the elevator on the way to the chemo floor and saying "Whatsa matter? Oh--is it Stage IV?")

And though I have about three weeks of yuck ahead, I surprised myself with my ebullience at the end of the day. I said good-bye to each of the nurses--they were pleased for me--and then walked out and skipped the length of the hall from Infusion to the elevator.