I am awake but my eyes are still closed, sunlight angling to invade my throbbing head. My stomach is churning like the Mediterranean in a mistral. The bottle of Zofran is on the table, six feet away, but that's five feet too far. Anticipating the wave of seasickness that will wash over me the second I stand up, I choose to lie still where maybe I'll drown in my misery. I feel sick and tired and, irrationally, utterly defeated that I had to start taking the anti-nausea medication after this last round of chemo. Now I can't even reach the drugs. Humiliating.
I recall a conversation I had with a sailor friend shortly after my diagnosis. His call came during one of the endless waiting room waits in the office of some specialist or another.
"How are you feeling?" he asked.
"Pissed off," I hissed into the phone.
"That's understandable," he empathized. "The problem is, you don't know who to be pissed off at!"
Yes, I do. Everybody.
I'm pissed off at the doctors who say I might need radiation after the chemo is finished and pissed off at the nurses who keep sticking me with IVs and making my veins hurt. I'm pissed off at the people who said they'd be here for me and aren't and even more pissed off at the people who are here for me because they're the easiest people to be pissed off at, what with them hovering around all the time, always asking me how I'm feeling. Why do they keep doing that? It's so annoying.
I am pissed off at myself because I have girlfriends flying in from all over the country this weekend for a Sex and the City movie party, something I've been looking forward to for months, but I am in a piss-poor mood that I can't shake. I feel blue. A misunderstanding with some guy leaves me in tears. I want to let it out, cry, wallow in self-pity. I know this temper, it's PMS, but then I remember that I'm not getting that these days. Which reminds me, I'm pissed off that I'm probably going through early menopause and don't have any kids, or a husband. Also, I'm pissed off about my lost yachting job, my trashed financial plan, and my evaporated travels. If I think about it a little longer, I'm sure I'll come up with a few more things about which to be pissed off. Surely there have been other miscellaneous injustices, scarcely noticed in the onslaught of the past five months.
Getting up on alternate Tuesday mornings is torture. This past Tuesday was #6 of 8 chemo treatments. Other people like to cheer that statistic ("Another one down! Only two to go!") but not me. It's getting harder instead of easier. The alarm goes off and I pull the pillow over my head, the little girl who doesn't want to go school. Mommy, I don't want to go! Please don't make me go-o-o! I wail to myself. It's too ha-ard! The words of a book I read as a child run through my head: "I could tell it was going to be a terrible, horrible, no good, very bad day..." I don't remember what the kid in the book was whining about, but he's got nothing on me.
Chemo this week lasted all day. I thought I'd get right in to start treatment since Dr. R was on vacation, but instead, I had to wait two and a half hours to see his partner. As usual, the effervescent Dr. Genius was quick to assure me that my cancer is CURABLE! that as soon as we were done talking we were gonna go in there and get me CURED! but then he let slip that he thought 8 rounds of chemo wasn't going to be enough. This is like being told, as you're approaching the finish line of your 10K, that the race has been changed to a half marathon. Don't forget that I hate running. Fuck cancer and all its stupid races.
Two cups of tea later, I can sit up and type. I try to psych myself up to shower and get dressed to go out, but I feel immobilized. I hate how I look in the mirror and I hate that my eyelashes are falling out and I hate that I don't have the energy to fight every hateful minute. I eye myself warily, wondering what offhand remark later today or tomorrow will trip the suppressed rage.
I troll through pages of saved (still unanswered) e-mails to remind myself of all the support I have.
"How can you be going through so much and showing so little? No anger or resentment?" writes my best friend from college. "I cry sometimes when I think about everything. Please tell me you have moments of weakness too."
Does this answer the question?
"Marge, you are one the bravest women I know," writes another friend. I don't know about that. I am strong. Resilient. I can't get comfortable with brave. I am pissed off that I have to be any of them.
###
Thursday, May 29, 2008
Moment of Weakness
Thursday, May 22, 2008
A Flashing Insight Into Infinity
Although there are oceans we must cross
And mountains that we must climb
I know every gain must have a loss
So pray that our loss is nothing but time
--The Mills Brothers “Till Then”
Anyone who knows me knows it was only a matter of time before my weekly Wednesday posts started showing up on Thursdays. Chronically late, I am the quintessential procrastinator, the reporter who never missed a deadline but always made the editor sweat, still writing, tweaking, making changes up until the last possible second.
Everything I read tells me I’m supposed to take it easy, not work too hard, don’t do anything I don’t want to do, but if I didn’t have a self-imposed deadline, I wouldn’t write at all. My original plan was to post on Wednesdays and Sundays, like my favorite New York Times columnist, but I accomplished that exactly zero times. It may not seem like much, but writing twice a week is a tough schedule, especially without the incentive of the Times paycheck.
As you might imagine, I adapted rather well to the no-worries, no-hurries Caribbean lifestyle, where even the newspaper might come out a day late if the beach weather was particularly fine. I thought time had taken on new meaning in the islands, but that was nothing compared to the melted-clock, Dali-esque world I inhabit now, where first the winter and then spring were measured not by snow and lilacs but doctors appointments and chemo treatments. Is it really almost summer?
Although I had to give up my yacht job for the season, I was fortunate enough to keep my part-time gig working on the Philadelphia Orchestra’s Internet 2 Global Concert Series, essentially a closed-circuit, high-definition, telecast transmitting live performances into university theaters around the world. I host the show and do the backstage interviews during intermission and between pieces.
I cannot say enough about how wonderful this experience has been. My orchestra co-workers—who have been with me from the head-spinning days of my January diagnosis through my dog-tired midpoint of chemo treatment just last week when I was napping between meetings and rehearsals—could not be more supportive. I am honored to work with this outstanding group of smart, dedicated and compassionate people.
And then there is the music.
It is not an overstatement to say that sitting in the concert hall at the Kimmel Center for the Performing Arts and listening to this most venerable of orchestras play (Beethoven’s majestic Fifth, Bernstein’s beautiful West Side Story, Tchaikovsky’s first symphony, the one he called “a sin of my sweet youth,” Mozart’s last symphony, the exuberant Jupiter) is life-affirming.
I produced a piece for the concert featuring Gustav Mahler’s Symphony No. 8, known as the “Symphony of a Thousand,” about how the Philadelphia Orchestra came to give the first U.S. performances of this massive work nearly a century ago. A young Leopold Stokowski—the visionary conductor who would team up with Walt Disney years later to produce Fantasia in 1941—was in the audience for the world premiere in Munich in 1910. The composer himself conducted what Stokowski described as “a flashing insight into infinity.” There’s a great story about Stokowski, a few years later, fleeing Europe amidst wartime tensions, leaving most of his luggage behind, but with the score safely stowed in his briefcase.
Our final broadcast of the season was a performance of Schubert’s last two symphonies, “Unfinished” and “The Great.” The young composer, responsible for some of the most sublime music ever written, died at age 31.
Perhaps it sounds trite to call music a universal language, but I am often at a loss to find words for what I feel while listening. Before January, it could be simply joyful. Now I find it healing.
For a less esoteric but equally life affirming example of the power of music, I take you to a catering hall in the suburbs where, last Saturday night, my godparents celebrated their 50th wedding anniversary. The highlight came early, when my godfather serenaded his wife with an old Mills Brothers song:
Till then, we’ll dream of what there will be
Till then, we’ll call on each memory
Till then, when I will hold you again
Please wait till then…
A sweet and simple declaration of love, without accompaniment, brought down the house.
In the search for something bigger, proof is often glimpsed in brief flashes. In the meantime, we focus on what’s in front of us, liking pushing back little blog posts another day and another day until there is nothing left to say about cancer. Till then.
###
Wednesday, May 14, 2008
The Big Casino
The morning of my 43rd birthday I woke up with a hangover. Sadly, there had been no party the night before.
Most days these days I wake up feeling hungover.
“I don’t get it,” I whined to a friend over the phone on one especially brutal morning. “I ate a healthy dinner, I didn’t drink, I got a good night’s sleep. Why do I feel like shit?”
“Maybe because they’re poisoning your body.”
Oh, right, I keep forgetting. Fucking chemo.
I pop an Advil, put the water on for coffee and turn on the computer so I can complain in cyberspace. Fun Kim has a suggestion:
Maybe you should start strategically placing remnants of a party around the house so when you wake up with the “hangover” you can trick yourself into the party. Maybe not. Just an idea.
Next I check my horoscope. Free Will Astrology is my guilty pleasure:
Alison Covarrubias is a mentor for female entrepreneurs. Her "Ladies Who Launch" program inspires women to be brave and brazen as they develop their own businesses. One of Covarrubias's prime pieces of advice: "If you don't feel like you're going to throw up, you're not taking enough risks." That's also my message for you, Taurus. In the name of smart gambles and tricky success, I dare you to push yourself way out of the comfort zone.
The phrase rattles through my aching head. You’re not taking enough risks.
True enough. I haven’t gambled on much of anything since being diagnosed with, as Junior Soprano dubbed it, “The Big Casino.” I haven’t had to figure out how to make 100 euros last for three weeks, or decide in a split second whether the captain of that gorgeous 1928 Fife about to sail to Valencia is a psychopath or not. Come to think of it, I don’t really make any decisions at all these days. I go to chemotherapy, see my cancerologist, get lots of tests and let all the people who love me worry about what one reporter friend calls “the C word.” Apparently the biggest chance I take is saying the word CANCER out loud. With TV mob bosses and tough journalists so faint-hearted, God only knows who else I’m offending. Cancer is not hard, but as a game it stinks. There’s no calculated risk and the payoff is lousy. Even if you win, the best you can do is break even.
I forward the horoscope to another Taurus friend who recently quit a well-paying job to open her own risky business. She, appropriately, has been puking her guts out. Me, my stomach’s so settled even chemo fails to make me sick.
“Work” consists of fulfilling the obligations I committed to before January and nothing more. I haven’t solicited for new paying jobs, nor have I been working on my book, stuck on a hundred pages in. A few rejections—one from a writer’s conference, one a short story contest—have left my unfinished manuscript shelved, along with a stack of novels I have neither the concentration nor inclination to read.
Scheduling chest X-rays and PET scans, making dates with Dr. R and generally trying to stay as healthy as possible is my new full-time job. Ladies who launch? I’ve become a lady who lunches. If I get up, get dressed up, make it to Center City for a morning meeting and meet a friend for lunch, I’m toast.
Last week my wigs and I spent two exhausting hours at the salon. You can call me vain, but trust me it was a necessity, unless you think it’s acceptable for a relatively young woman to look like an aging bald man with a bad combover. My excellent stylist did the best she could, cutting what’s left of my thinning locks super short. Then she cleaned up Karina’s flyaways and gave the Lindsay Lohan a bang trim.
My hair doesn’t look hip and cool short, it looks like some old-lady beauty-parlor cut, thin and teased, except it’s not some shade of unnatural red or inexplicable blue. In an attempt to draw attention to other assets, I got my toes painted purple, splurging on the Balinese pedicure, inspired by the ancient secrets of the Indonesian salon owner’s grandmother. I breathed in the all-natural floral and ginger scrub and drifted away to the Pacific aboard little Carina which, another e-mail informed me that morning, had safely arrived in the Galapagos. Captain Kid and his girlfriend were probably swimming with sea lions and photographing the prehistoric giant tortoises at that very moment. Then my mind wandered over to another friend sailing in the other direction, across the Atlantic from New York to London. Okay, so he’s on the Queen Mary 2 and not a 30-foot sailboat, but, as he’s never been on a boat before, he is no less adventurous. It makes me happy to know a few people more fully immersed in salt water than me and my toes in the South Philly footbath.
Not all of my adventures are vicarious. I spent my birthday with one of my oldest friends, doing pretty much what we would have done to celebrate our birthdays back in 7th grade, i.e. going shopping at the mall and talking about the boys in our life. My girlfriend is married with two kids and lives in the suburbs, but has cultivated a double life as a rock star groupie, and not a fantasy life, either. Thanks in part to her brother’s status as a bona fide Atlantic City high roller, my friend frequently finds herself in the front row of sold out concerts. The Stones are her favorite so I address her as Mrs. Jagger over bad Chinese in the food court. She refers to me as Mrs. Bono and we buy clothes we think our fake rock star husbands will like.
The day after my birthday, Ellen and I took a road trip to New York to see the sublime Patti LuPone in the Broadway revival of Gypsy. We savored the legendary stage star from the second row of the St. James Theatre, another perfect detail in a day also blessed with perfect traffic and parking karma. After the show, we met up with one of my journalist friends for drinks at the Museum of Modern Art, where the cabernet cost $25 a glass.
“So how are you?” asked the Gotham newsman.
Well, I’ve been sick for three weeks, and I had to get a chest x-ray and I’ve been obsessively taking my temperature every few hours because, despite being an adult, proof is now required when my friends or family ask if I have a fever. My white blood cell counts are low, and I’m tired all the time, and might have to get that $3500 Super Shot that makes your bones hurt again. Meanwhile, I’m really losing my hair now and my excitement about all those fabulous scarves I bought during my last trip to New York lasted about three days. Now I’m over it and I just feel ugly when I look in the mirror.
“Fine, thanks.” I replied.
“Beautiful scarf.”
“Versace.”
Gotham Newsman told us about his efforts to convince his boss to send him to Myanmar, a shift in the conversation that made trendy Manhattan bars and temporary hair loss instantly insignificant, silly even. (It did not, however, detract from the importance of Patti. Good theater remains up there on the list of Things That Really Matter.)
After several more glasses of $25 wine than originally intended, Gotham Newsman picked up the tab and sent us on our way. Ellen, another 40-something single gal, had borrowed her Dad’s car for this trip. Like a little kid pooped after a full day in the big city, I collapsed into the front seat of the Chrysler sedan, whipped off my scarf, and fell asleep listening to Howard Stern on satellite radio grilling Steve Guttenberg about the size of his penis. When I woke up half an hour later, Ellen was speeding down the New Jersey Turnpike and Howard was still talking about Guttenberg’s evidently generous endowment.
I don’t know why this tidbit sticks in my head, maybe because it’s no more off-color than the rest of my current life, but a few days later, I am still laughing about it as I am typing away at three o’clock in the morning. Despite being a chemo day, which makes me really tired, I can’t sleep—which is truly obscene—probably because of the steroids they give you to help the anti-nausea medication work. I am a junkie, so wired from whatever all those drugs are they’re slipping into my cocktails, I might as well drag myself out of the comfortable bed in which I’ve been tossing and turning for the past two hours and head back downstairs to the floor with no clocks for a few more rounds of… whatever it is we’re playing.
Maybe I’ll get lucky. It was, after all, a decent day in the cancerologist’s 13th floor office. My latest PET scan showed no illumination in my neck and chest, indicating the cancer cells have stopped their frenzied dividing dance; inspecting the scan on Dr. R’s computer, I noticed my brain was the only area of glowing hyperactivity, which might also explain tonight’s restlessness. Dr. R was “not ready to jump up and down yet,” but my response to the chemo, he said, has been “phenomenal,” proving, I think, that I am, in fact, the Chemo Queen.
“Woo hoo,” I responded, minus the exclamation point. “I don’t have enough energy to be more excited than that,” I apologized. “This lingering cold has kicked my ass,” I added, neglecting to mention the two days of birthday celebrations.
“Don’t forget the chemotherapy has a cumulative effect,” said Dr. R, “so you probably will feel a little more tired.” Still, Dr. R pronounced the overall picture—you guessed it—good news (!) but I am on to him and the rest of his ilk. Here in the land of relativity, it behooves the patient to know the house rules. Sure the PET shows the chemo is beating the cancer… but are we covering the spread? When can I cut my losses and go home?
Later in the infusion room, I saw a woman who, on my first day of treatment, gave me some helpful advice and a positive assessment of her first round of chemo. Her presence as a veteran was comforting on that day, but today, well into her own treatment for a recurrence of cancer, she was gaunt, pale and, having also suffered a stroke, slurring her speech. She told me she was upbeat because her latest scans also show cancer retreating, but she is a shadow of the woman I met two months ago. I am always uncomfortable talking to her because, having watched her deteriorate before my eyes, I can’t help but wonder what the odds are of ending up like her. The more she wants to talk, the more I need to bolt. I mumbled something lame, got the hell out of there, and went to lunch.
###
Wednesday, May 7, 2008
Voice of a Sailor
Since I am still not feeling well (not feverish--98.2 at last check--just not well), I was happy to discover that I don't have to write about me this week because my editor at Sail magazine did it for me. He's not a bad writer, either...
Click Here to Read More...
