Deported, So To Speak

I got my port removed today!

The device was surgically placed just below my collarbone back in November, prior to the start of chemotherapy. Chemo drugs are so corrosive they would burn through the smaller veins in the arm; the port allows these drugs to be infused directly onto a major artery. Here's what the port looked like while it was still in me:

And although it did allow me to communicate with the Starship Enterprise, I was nevertheless happy to be rid of the port. Its removal has symbolic importance. Some people choose to keep their ports in case they need them again in the future, but that doesn't seem like much of a vote of confidence in the immune system. Anyway, my port was sore much of the time, especially when I used my arm. Maybe it's just me, but I enjoy having pain-free use of my arm.

Rick documented today's surgery. Don't be squeamish, now!

Results of Post-Treatment PET Scan: Drum Roll, Please

I wish you could have seen my before and after shots. I asked if I could have them emailed to me, but the technology wouldn't cooperate. The PET scan I had done back in October made me look like a dalmatian, covered with black spots of cancer, along with some alarmingly large dark patches. In the repeat scan from a couple weeks ago, there is not a dot of black. My oncologist said my scan was pristine. That was the word he used: pristine.

And this is fabulous not only because it's fabulous, but because it's not necessarily what we were expecting. Many patients with my diagnosis don't get a complete remission from their treatment.

Pristine.

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.

Te'eburnee

Tuesday night I celebrated the 50th birthday of a dear old friend. I went to YouTube and played about 9000 songs by this friend's favorite artist, Bruce Cockburn. The friend himself was not present. He's been dead lo these 18 years. And so it may be sacrilege, but I'm going to say it anyway: much as I appreciate Cockburn's skill as a musician, he is hands-down the worst lip-syncer I have ever laid eyes on. Bruce. Man. Dude. Dude.

Later Rick and I ate cupcakes and sang the happy birthday song, and though my friend's death pre-dated this era when all of us are allergic to everything, I know he would appreciate the delicious absurdity of the flourless, gluten-free, sugar-free cupcake.

Meanwhile, in the next room, another dear old friend of mine lay dying. Max had been ailing for some weeks. Of cancer, of all things, probably, although at a certain point it seemed cruel to keep taking him to be poked and prodded for a diagnosis, and I stopped. His ailment weirdly paralleled mine. He started to not feel so hot sometime in the fall, like me. His bloodwork didn't turn up anything, just like mine didn't. His weight and energy dropped. Buddy, I can relate. He got an opportunistic mouth infection; so had I. At the end he even had night sweats. Who knew a cat could have night sweats? I didn't even know people could have them until I had them myself.

And I am taking this loss very hard.

My naturopath pointed out that chemo intensifies grief just as it does anger and irritation (ask Rick if I've ever been just the tiniest bit irritable these past three months).  But it also does not escape my attention that perhaps grief is doing a sneaky end run around the good attitude people keep telling me I have. I think of a poem by Gerard Manley Hopkins, about a child who is saddened by the dying leaves of autumn. It begins, "Margaret, are you grieving / Over Goldengrove unleaving?" and ends "It is the blight man was born for,/ It is Margaret you mourn for."

Then, too, grief can fashion a weird daisy chain of losses: you start weeping over one dead cat and soon you're weeping over a lifetime's worth, plus all the friends, relatives, colleagues, mentors, role models and other beloveds who've left you behind.

But in the moment I'm not conscious of thinking these things. I'm not conscious of thinking anything at all, just of wading into a wordless lake of sorrow.

May I eulogize? Max was a cat who garnered praise from people who don't like cats. He was quiet, polite and exceptionally handsome--all black, a strapping, panthersome fellow. And he was all love, pure and uncomplicated and thorough. He liked to crawl under the covers with me and hook his paws over my arm, purring like a locomotive. (Over 13 years we had hundreds of high-quality naps together). If he wanted my attention, he'd place one paw on my face, or press his velvety forehead to my own. A cat isn't a person, of course, but a cat can do things people can't.  He doesn't care if you make social faux-pas or can't use an Oxford comma. If you are good to him, he loves you completely, unconditionally, without judgment. He loves you in a way that human beings can't pull off. Also, fur and whiskers and paws and magnificent long tails and purrs are special things for which there is no substitute.

Max was truly bonded only to my humble self, and I always felt honored to be loved by him, lucky to have him in my life, graced by his graceful presence in my house. He was such a devoted cat I often thought of him as a Boddhisatva--in Buddhist tradition, an enlightened being who chooses to keep coming back to earth to accompany the rest of us until we get there ourselves. It even occurs to me--I'm walking way out into woo-woo territory here--that he may even have absorbed some of my cancer for me. He was small, and he couldn't sponge up all my illness, but he could take away enough, maybe, to improve my prospects, though it killed him in the process.

Max hadn't been himself for a while, but he didn't start to feel really punky until about Tuesday. But Wednesday I was out of the house all day teaching, and Thursday was chemotherapy, so he had to wait until today for a visit from a vet who makes house calls for euthanasia. "Oh, they do that?" Rick said. "I figured you could use Google to find a recipe for home euthanasia." I said, "Yeah, well--you can use Google to find a recipe for home abortion, too. Doesn't mean it's a good idea."

The vet was great--compassionate, unhurried, skilled. She gave Max a sedative so nothing hurt any more, and she had all the time in the world while I told Max everything I had to say about and to him, which turned out to be quite a lot. Then she followed up with a shot of euthanasia, and in about a minute, the body curled  in my lap wasn't Max any more.

We buried him in the front garden, in a spot he spent so much time in, during the summer months, that he'd earned the nickname "Vegetable Proctor." (He was a cat of many nicknames: among the others, Thunderpurr,  Maximum Cat, Maximus Cattimus, Maximiliano, and since my trip to Italy, Pontificus Maximus; Big Guy, Sweet Guy, Fur Man, Mr. Cutepaws, Buddy, "Max, you old dog"--always said with a wink and a pantomimed elbow-ribbing--Mr. Soft, Friend and Constant Companion, Mr. Plushy Forehead.) And we planted a daphne bush on his grave, a winter-blooming plant with intensely sweet-smelling blossoms he was fond of, and which will flower every year around the anniversary of his death.

A good death helped, a little, and a nice burial helped, a little. And still this pain is acute.

In Arabic there is an expression of great love, "Te'eburnee," which means literally "You bury me." In other words, I need to go first, because I couldn't stand being here without you. My reaction to Max's departure does not bode well for future losses (although Rick says his own death will be easier for me to take than that of the cat, because Max was never known to whistle tunelessly, misuse "lay" and "lie," or deliver long sports updates.)

Truth is, the idea of any of my family having to carry on without any of the rest of us is as excruciating as it is inevitable--so much so that I sometimes conjure a fantasy of a big asteroid taking us all out at once. It would leave only a big smoking crater and be very quick.

I shared this vision with my 21-year-old, but for some reason he wasn't as enthusiastic about the idea as I am.

Get the Skinny

Cancer caused me to lose about 15 pounds I didn't really need to drop, through a phenomenon with the terribly nineteenth-century name wasting. Wasting occurs when tumors direct the body to eat its own muscle mass. It replaced my fairly fit, youngishly-middle-aged physique with that of a little old chicken-lady who lives on cigarettes and 3.2 beer and has never exercised a day in her life.

Luckily, chemotherapy and massive quantities of naturopath-prescribed fish oil have stabilized me at about size 4. I should enjoy it while it lasts: if you don't look too closely, you might mistake me for a cover girl, fashionably shorn and anorexic. To paraphrase the comedian Sarah Silverman, I don't care if you think I have cancer, as long as you think I'm thin.

Snow Day

Following each round of chemo, I have a mediocre week, during which my modus operandi is muddling. The next week I'm a limp rag, a thing you'd use to clean the bathtub, with hardly the energy even to resent it. Then, bizarrely, miraculously, I perk right up for a week. That is the time I try to eat right and exercise. I dance; I take brisk walks; and, this past week, I went snowshoeing in a modest way.

Rick and I spent Monday night at Mazama Lodge, a rustic structure on Mt. Hood run by the mountaineering organization with which he is very involved. It snowed and snowed while we were there, all day and all night. (Before we left, Rick would have to dig the car out with a shovel). The lodge's floor-to-ceiling windows framed a view of what looked like Russia--you could practically hear the Tchaikovsky in the background. The dark limbs of fir trees sagged under the weight of all that snow. Twice we ventured out to play, and even in our snowshoes, we sank into the powder practically up to our knees.

In Good Company

You know how when you learn a new word, suddenly you see it everywhere?

The same is true of diseases.

Seriously?

Sometimes material turns up around our house with editorial commentary.

Happy Dance

My oncologist has told me that I am now at the half-way point of treatment. I'm very glad for this information, because the unknown can take any dark shape one can imagine, and I had been envisioning a chemotherapy dragon devouring much of 2012. This news also means that treatment is working, which I really didn't know a month ago. Now it appears that my last treatment will be in early March. At that point I should be tumor-free, and can begin the process of recovering from chemo. So I'm dancing a little jig. When I've finished choreographing the steps, I'll teach it to you, and you can all dance it with me.