Sunday, July 20, 2008

Know Thyself

Here is a philosophical question: If one goes to see the Dalai Lama speak at a sold-out Kimmel Center appearance, but scams her way in by asking old co-workers to spot her a ticket, does that cancel out the spiritual value of the pilgrimage? Does playing the cancer card give a person bad karma? Do Buddhists even believe in karma?

Karma seems more up the alley of the yogi whose meditation class last Monday night was attended by a woman who had never been there before. The intense but welcoming Yogi Shanti wanted to know what the woman was looking for, which was a very good question indeed, even if somewhat horrifying when asked in front of everybody else in the room. The seeker didn’t have a good answer, but she had ponied up the $18 fee for this one and wasn’t about to wimp out so she mumbled something about “stress relief.” This appeared to be the wrong answer.

Clearly the seeker had wandered off her regular path. Her preferred yoga class is taught by an ex-journalist friend whose old beat included some of the most heinous murders in Philadelphia. That yogi has retained a healthy bit of newsroom cynicism, and every now and then throws Talk To The Hand pose in with downward facing dog and the sun salutations. Sometimes she can even be persuaded to go out for Jameson's and gossip after class, the better to exercise the sarcasm chakra.

Stress and anxiety spiked this week. With my last chemo treatment a couple weeks behind me, I was feeling physically better, but the looming date with Dr. X and his extreme X-Ray agenda had jump-started my nerves. I’m not really an X-Games kind of girl, no matter how fast my mind is racing.

Desperate for a rest stop, I opened the book that Yogi Shanti gave me. “The purpose of meditation is to know thyself,” reads the first line, knowing thyself being a prerequisite for knowing and communing with the Divine.

Know thyself, that dictum of the ancient Greeks, has been an oft-repeated mantra during my last couple years of mostly self-imposed life changes. “You’ll really get to know yourself,” people would say. “You’ll find out what you’re made of.” Knowing yourself is a worthy quest, right up there with one of my other personal goals: being known.

I know myself well enough to know that for me, high stress equals hair-trigger emotions. This might explain why I can cross an ocean in a 30-foot sailboat, but an unkind remark shakes my confidence to the core. Better to channel all that stress into rage in order to keep some modicum of control over the situation, the situation currently being preparation for radiation therapy.

The morning of my prep session, I followed my standard chemotherapy regimen, i.e. lying in bed, staring at the clock and calculating how long I could stay under the covers and still make it to the cancer center within a reasonable period of lateness. (The answer, from my mother’s apartment in Center City, being 7:38 a.m. for an 8 o’clock appointment.) I arrived at the Bodine Center for Cancer Treatment at Thomas Jefferson University Hospital at 8:04. Radiation oncology is in the basement.

Things started out okay, despite the nightmare of the one-size-fits-no-one-except-maybe-the-XXXL-guy-in-the-corner radiation gown. This is not about fashion, folks, I’m talking about decency. There are acres of common area in The Basement and there was no way to tie this thing without leaving gaping holes and I am hardly the most modest person on the planet, as anyone who happened to be at the Willy T on my 40th birthday can attest. For anyone more decorous, this would have to be humiliating.

I double wrapped the thing around myself, knotted it like a sarong, and stepped out of the ladies locker room into the first waiting area. In addition to the plainclothes waiters, there were two men dressed like me, one bald, one wearing a baseball cap. I gave them a sheepish grin, resisting the urge to curtsy, or maybe do a pirouette.

“I forgot the matching heels,” I said as I walked past them.

The bald guy laughed. Apparently radiation was going to be as hilarious as the rest of cancer.

“At least now you know what color they are so next time you can wear a head scarf that doesn’t clash,” baseball hat guy called after me, as I began the two-mile walk down the hall to the nurse’s station.

I didn’t know I was so attached to the ugly gown until I was required to take it off and lie down, naked except for my underpants and flip-flops, on the cold CAT scan table. The air conditioning was on high. Three women (nurses? technicians?) were making dozens of minute adjustments to my position. They tilted my chin up a little, pushed my shoulders back, twisted my hips. They taped my breasts out to the sides and covered the lower part of my chest with a heavy sandbag, efforts to protect those areas from the radiation field, which would target my neck and chest.

Once happy with the position, it was time to make the mask. A large, flat piece of plastic with holes to breathe is heated up and placed over you. “Keep your eyes closed,” said one of the women. “It will feel like a hot, wet towel over your face.” I tried to imagine some exotic spa treatment but the smell of plastic and chemicals just doesn’t compete with lavender. While the women deftly molded the plastic around me, I tried to contemplate my Dalai Lama quandary but the present moment is less Zen, more Twilight Zone. What did Dr. X say? Each radiation treatment was equal to how many CAT scans? 150?

Just then I heard Dr. X’s voice. “How are you Miss Smith?” What is he, a dentist? He knows I can’t speak, or even blink my eyes with a yes or no answer, at this moment. A friend later suggested a hand gesture might have been an acceptable response given the circumstances, but even they are in a particular position, and the nurses can’t stress enough how important it is to remain perfectly still because, you know, one false move and the wrong part of your body gets blasted with some lethal amount of radiation.

I got a CAT scan, which the doctor will use to help determine exactly where the radiation will go, and pretty soon I was finished and the nurse handed me an appointment card for next week when they will simulate an actual treatment. She casually added that they might start the treatment for real that day, which was not at all my understanding from my last conversation with Dr. X, but he was nowhere to be found.

Then, just as I was starting to freak out, and forcing myself to do that anxiety-to-anger thing, I learned that there’d been a scheduling mix up which meant waiting four more hours for my second scan. This scuttled my plans to sneak in and hear the Dalai Lama, but on the upside (a) potentially preserved my karma and (b) gave me someone appropriate to direct my rage at: Brian, the guy with the misfortune to deliver this news.

Is it a big deal, a delayed scan? No. But in the fragile balance of this wacky cancer world where daily survival means holding the big issues at bay, it’s the little injustices—scheduling conflicts, a minor misunderstanding—that sometimes bring my walls tumbling down. It’s like those “quality of life” crimes they’re always talking about at city hall. Sure, that double homicide on the drug corner a few blocks away is serious business, but it’s those damn drunk kids who keep pissing on your lawn after the ball game that are really wearing you down.

Brian must have good karma because he smiled through our entire exchange, conducted with absolute sangfroid on his part, and in the end I just pushed all the rage down and cried anyway.

Know thyself.

I always thought that by this age, wife and mother would be part of who I was. Quitting my job took away another label. If you ask me if I ever defined myself by my occupation, I would say no, although for many years, I often said, “I am a reporter.” Conversely, I never defined myself by my last full-time job—waitressing—even though other people did. (“If you’re such a good writer, how come you’re a waitress?”) Traveling alone stripped away a few more layers. (Where do I want to go? What do I want to do? How am I going to make this work by myself?) Just when a clear picture of what’s going on inside was finally starting to emerge I walk past a mirror and—quite literally—do not recognize myself.

So here I am, sitting in another recliner with another IV and typing away because writing is part of what I do to try to figure things out and God knows it’s hard to meditate when they keep sticking you with needles. Before I can get the PET scan, which will be fused with the CAT scan to determine the radiation dose, we have to wait for the chemicals I’m drinking to kick in. (Barium Sulfate Suspension, "Banana Smoothie Flavor." What the fuck is barium, anyway? I seem to remember seeing it on the periodic table of the elements that Fun Kim sent me as a joke from Oregon where she is student teaching at a high school, serving her sentence for the sins of Pamplona.) My talisman for the afternoon is a piece of cloth touched to the relics of St. Theresa, pressed into my palm by my Mother, who also informed me that our neighbor would be praying the rosary for me that day.

I am overwhelmed by the number of people who pray for me from devout Italian Catholic family members to a dear friend who insists her mother is a member of Our Lady’s Heavenly Bowling Team. I’ve done my share of talking to God in the past few years—mostly in magnificent European churches while the mass was going on in some language I didn’t understand, or in remote, natural locations involving expansive sky and sea—but I’m not as comfortable with prayer in the traditional sense.

It takes me a long time to count my blessings. By the time I give thanks for all the amazing people in my life, and ask God to take care of their needs, and then pray for the homeless and the nation’s leaders, and all the people with bad shoes (that’s a joke, for the readers who think my hilarious cancer posts are getting too serious), and all the cancer patients who are much worse off than I am—and I know there are so, so many of them—and then move on to the impoverished children in Third World countries, I’m exhausted, not to mention fraught with worry about all the people I might have forgotten. “Shit, I didn’t even get to world peace,” is the last thought in my head before I fall asleep.

When I do get around to it, I ask for strength and love but, oddly, never to be healed or cured. That’s always felt like a deal between me and my body, somehow wrapped up in whatever else it is that ails me.

It is natural, almost cliché, to become more of a spiritual seeker when faced with serious illness and death, both of which have crossed my path in the last 8 months. My diagnosis came shortly after my father’s horrible and sad death from metastatic lung cancer—horrible because of the disease, sad because of the circumstances surrounding his death, circumstances dictated in large part by how he had chosen to live.

These days, my religion is a bit of a Chinese lunch buffet. An amalgam of East and West. A little insight from Atheist Lover or Cynical Yogi. A helping of inspiration from Fake Redhead or a woman named Mean, who is anything but. Angels come in many forms. Mrs. Jagger has been known to quote a Stones song or two (“You can’t always get what you want…”)

For the record, I always feel like I get what I need. And I am willing to accept that there is something I’m supposed to learn from all of this, something I missed, even with all the re-evaluating of the past few years. Which means I’ll probably be spending more time at Cynical Yogi’s studio, where I can leave some negativity at the door, then go home and work the rest out on paper.

I like a little edge with my enlightenment, an attitude that says sometimes you have to grab the Universe by its you-know-what and shake some truth out of it, and sometimes the truth isn’t pretty. Sometimes it’s hard or scary. Sometimes it’s just whiny, self-indulgent or self-pitying, unreasonable or un-p.c.—which doesn’t seem very enlightened at all—but it’s what I feel on some days, and I am not afraid to own it.

I’ll pray for strength to be a diligent student. When you don’t have all the answers, you ought to keep studying. Especially when you’re paying for the class.



tim said...

After a business trip to Chicago I got to see a mutual friend. She mentioned your blog and that since I am one who went through my own life altering experience, I might be interested in peeking at your world.

I'm glad I peeked and will probably stare when I have more time.

Be however you feel, whenever you want and feel free to get in touch.

tcastallo at gmail

tim said...

oops...I meant:

timcastallo at gmail

Sarah said...

OMG. I was just googling the phrase "cancer is hilarious!" because one of my best friends is always quoting that line from some TV comic (I wanted to remember who), and I found your blog and YOU ARE ME! Before you think I'm some weird stalker chick, you should know that I'm an English professor (granted, we can stalk too) who is just over-identifying with your incredulity, humor, and life experiences (which sounds like a euphemism for all the shit life can throw at us). Of course I can't resist doing the "me, too!" rejoinder, although I'll try to trim back that part. Seriously, though, the echoes are loud and the sense of bonding fierce, and I just wanted you to know that I think your blog is awesome, apt, close to the bone, revelatory, blazingly intelligent, and, of course, hilarious. Thanks so much for it.

But enough about you, let's talk about me. I took a yearlong sabbatical (2006-2007); sold my house; traveled around-the-world for six months by myself; came home, bought a new house, had a long-overdue routine mammogram, went to Guatemala for two weeks. Came back from Guate to find a letter in my mailbox and three voicemail messages all saying "you must come in for a second mammogram." I had just turned 50, felt great, had no history of cancer in my family. But I got a copy of my medical report, then got on the web, and then freaked.
Had a second mammogram at the end of February: then a breezy radiologist on her way to a digital mammography conference in Las Vegas popped by the room where I'm sitting on a table in a cavernous gown and cheerily says, "You have cancer, you might want to buy a notebook so you can write down the different things your doctors tell you, I know this is a lot to take in, right now I have to go but you can give my colleague a call, I don't want to miss my plane. Cheerio." Or words to that effect.

Flabbergasted was I.

Went out that night and bought eight books. Went to the library the next day and took out seven more. Learned fast.

Trip to the Mayo with my two best friends; mastectomy, chemo, radiation; moving; and then gall bladder surgery (unrelated), all in the remaining months of 2007. Within a week of finding out I'd need to go through eight rounds of chemo I had ordered a six-month subscription to People, bought a television (I hadn't watched in about ten years), and got the highest-priced cable package I could find. I figured that if I were going to get chemo brain, I might as well enjoy it. I never got chemo brain, but I kept the TV and the expensive cable package. Now that I think about it, maybe I DID get chemo brain.

Needless to say, 2007 was a very bad year.

And now here I am: almost six months after my last radiation treatment, and only four days away from my last Herceptin infusion (after a year of them -- 16 down, one to go -- fortunately, no side effects except for the occasional bad attitude) and a week away from a giant party to celebrate the end of my cancer treatments (with the exception of a little pill called Tamoxifen, which I take daily). Around 70 people are coming, and I know most of them. No, seriously, every chemo driver, chef, friend, colleague, family member, and favorite grad student I ever had will be there.

Which is more than you wanted to know.

Oh, and I'm a half-assed Buddhist, cafeteria-style, Zenny, make-peace-not-war, lovey-dovey type who just over-relates to your story, likewise never experienced any grand epiphanies, had already examined life (and my own navel) too closely, and am blissfully happy to still be alive. Prognosis is very good too, although I'm too superstitious to do more than hope.

Sorry to clog up your blog with such a long ramble, but I couldn't figure out how to send you a private email. If you made it through this whole post, though, know that there are others of us out here who are rooting for each other and for you. You're going to make it and, despite the insensitivity and insanity of people who say "it'll give you so much to write about!" in fact, it has given you license to write a blog that is one of the most brilliant things I've ever read on the web. Thank you.

Hang in there,


Anonymous said...

I, too, am one of your pray-ers. Thank you for making known your specific request. I will add it to my own requests for you. Love you, dove you, so very, very much.

P.S. Your recent photos speak to the soul. Thank you for posting.

cancersucks said...

Well said. I have decided that my middle child (who lives science- 7 years old) is going to grow up and invent a small pill that does the same job as that nasty barium. At Bryn Mawr imaging I couldn't make it to the bathroom and threw up my barium in the water fountain in the hall. Nice. Now I go for pet/ct scans/small bowel studies with a tupperware bowel and zofran. Thinking of you. If you save your radiation mask maybe we can start an art show. I have a pic of mine on early posts on my blog. Be well.