My late night reading matter (Sunday 1:22 a.m. to 3:02 a.m):
AND FINALLY, ON A MORE FUN NOTE:
Tonight I am committed. To quesidillas, to wine, to a Santana album I've played a thousand times already, and to cancer. What I'm not yet committed to, which worries me, is chemo.
If only I could commit to chemo. As in: COMMIT. Logically speaking, either you commit to something or you don't. But here I am straddling the toxins, questioning the wisdom of this route: killing off the good with the bad — one of the many tactics of war that appall me.
Appall isn't exactly the right word. Sadden would be closer. Horrify would be closer still. Sicken would be a tie with horrify.
So. Where do I go from here? To another glass of wine? More music?
I like committing myself to things. Commitment is good. Wise. Transcendent, even.
I want to commit to chemo. I want to bite the bullet and go for broke. Oh, I've made the appointment: Thursday, Nov. 10th, 11 a.m. Eat a light breakfast and wear something comfortable. But I'm not there yet. Will I ever be? This question cuts into my Saturday night.
This just in (well, a couple of days ago) from my Wig Scout:
I'm making good progress on the wig front. I'm learning a lot about both wigs and hats re: cancer treatments. Interesting. I'll have more info on Tuesday, that's when the woman I need to speak to next will be in.
All's well here.
It's impossible to do all that needs to be done when you are trying to lead your normal life (i.e. work to earn a living) and at the same time trying do all the EXTRA things that go along with having cancer. This week I have been trying to do my chemo research, so that I will have my list of questions ready prior to the second appointment with my oncologist at 10 a.m. in Redwood City. Example of just ONE question: Will I be receiving treatments with a porta-catheter or intravenously? How is this determined? Do I have a choice? What are the pros and cons?
At 2 p.m. I have an appointment with Jee, a professional organizer who is going to help me catch up on the piles of neglected paperwork (including Writing Salon tax stuff that has fallen by the wayside) from the last three hectic months.
At 4 p.m. a guy named Todd, from a housecleaning service called Totally Clean, is coming over to give me an estimate on what it will cost to get help cleaning my own house plus the Writing Salon while I'm incapacitated.
Tomorrow I have a 1 p.m. appointment at the Center for Integrative Medicine at CPMC. How to use guided imagery to lower stress (i.e. the kind of stress that tends to rear its head when you get that letter from the health insurance company saying that they are "assessing" your latest medical bill for $12,568 - for the first surgery; the bill for the second, bigger surgery has not yet arrived) and will let you know their decision) and get through chemo more easily (hopefully). Also hope to set up an appointment with the acupuncturist. Also an appointment to find out what "program" the "alternative treatment team" has come up with for me.
Thursday morning I have a dentist appointment, because I have been told to do everything I can (i.e. a good teeth cleaning) to keep from requiring an emergency dental work while on chemo (which can tend to cause or exacerbate mouth infections).
Inbetween all these "extracurricular" activities, I am attempting to keep up with my usual work life (a 40-plus hour a week job), which this week also includes teaching a class on Thursday night.
Do I have time to throw in researching how to find a decent wig or two? Hardly. And I thank my lucky stars for dear friends like Kerry! (Also Toby, who has offered me the use of any of her 20 hats, given that I own none - other than my lovely vintage chicken feather hat!)
"For most of life, nothing wonderful happens. If you don't enjoy getting up and working and finishing your work and sitting down to a meal with family and friends, then the chances are that you're not going to be very happy. If someone bases his happiness or unhappiness on major events like a great new job, huge amounts of money, a flawlessly happy marriage, or a trip to Paris, that person isn't going to be happy much of the time. If, on the other hand, happiness depends on a good breakfast, flowers in the yard, a drink, or a nap, then we are more likely to live with quite a bit of happiness." —Andy Rooney
As I said to Jack last night as dinner was cooking — a normal dinner of fish, rice pilaf and fresh green beans, with no special considerations re: whether I'd be able to digest it or keep it down — "I'm still in the 'it's not really real' stage. I can babble on and on about all these different 'fascinating,' 'life-affirming,' 'silver lining,' 'amusing' and 'educational' aspects of having breast cancer — everything from blue breasts and red scars to estrogen speculations to wig-shopping — because I haven't yet started any of the treatments that I so dread (and I do dread them, no matter what the doctors tell me about how they're so much 'better' now than they were twenty years ago).
I mean, RELATIVELY speaking, I'm sure they're better now than they were twenty years ago, but it sounds like they were hell-on-earth twenty years ago, so what does that mean for ME, NOW? That they are merely going to be purgatory-on-earth? Yippee!
Yesterday a nice woman sent an email to me, saying that she had cut her work day down to five hours during her chemo and radiation, but that if she had it to do over again she would not have worked AT ALL, noting that only TWO YEARS later is she starting to get her old energy level back. She advised me to try and arrrange my life so that I wouldn't have to work, period. Well, this is not an option for me. I am not independently wealthy. A couple of days before I got this woman's message, another nice woman advisor told me that many women preferred to keep their lives as close as they could to 'normal,' during chemo, because continuing to work really HELPED them to get through it.
Meanwhile, my oncologist has advised me to do "dose dense" chemo, which would entail having a treatment every two weeks for three months. But when I was talking to the woman who does breast cancer "consulting" at CPMC, she said that if I intend to keep working, it's a lot easier to deal with treatments that are spaced three weeks apart, because I'll have more time to recuperate between treatments, rather than being thrown back into the ring, the second I start to catch my breath, for Round Number two... or three or four or five or six."
So who do I listen to? Nice Woman #1 or Nice Woman #2? My oncologist or the breast cancer consultant?
What? Come again? You're serious? I have to make up my own mind? No one else can make it up for me? I have to listen to my gut instinct? My intuition? My inner voice of self-knowledge? Oh please. Gimme a break. Fuck.
So...there's no one way, no right way. Only my way. And yet I have no way of knowing, in advance, what my way is going to be. Nausea or no-nauseau? Flat on my back or chemo-schmemo? This makes PLANNING rather difficult.
Ah yes. Right. Almost forgot: Nobody ever said it was gonna be a piece of cake.
Having breast cancer has opened up a whole new world of shopping possibilties for me. Buying new shoes, clothes, furniture and "home decor" has been fun but limited and conventional. For the past few days I've been gearing up for shopping in the "W" aisle, where one can find, for starters, wigs, whey, and wags (leading to walks — as in: I want a dog again).
The Whey: It's a powder that costs a fortune: "Cross Flow Micro-Filtered Whey Protein: UniPro's Perfect Protein — Vanilla Flavor." You mix it into your OJ, pancakes or whatever, and fill your cells with cancer-fighting (or let's say immune-enhancing) protein. It's also a preface to guided imagery, acupuncture, Japanese mushrooms and anything else you can do to try and offset the DOWNER of western medicine's philosophy that basically says: "Treat the superficial symptoms (ie., kill them any way you can — the more blood-and-guts, the better), rather than the eastern view that basically says: "Let's address the underlying problems that cause the symptoms. And let's do that by looking at the WHOLE person, not just the disparate parts of that person."
The Wag: Jack, who has never owned a dog and has insisted for the last four years that one should not own a dog in the city, went out and bought a book for me the other day: The Good, the Bad, and the Furry. Bless his kind and generous heart. This was because he read my blog post about wanting a dog again, and although he already knew I wanted a dog, I guess the doggy bloggy pushed him over the edge.
One of the reasons (only one of them) that I want a dog again is that Dr. Draisin (aka Dr. Acupuncture/Chinese Medicine/Etc.) suggested that when "chemo fatigue" hits, I would do well not to give in to it. He said that I and my chi would be much better off if I were to make every effort to avoid hardcore immobility (which will be a real stretch for me, I can guarantee you that). He said I should consider gentle dancing, yoga or walking.
Walking seems like an easier first step than the bolero, but I know I won't do it on a regular basis unless someone puts me on a leash and drags me out the door. Or vice versa.
Let the shopping in the "W aisle" begin!
So I am in an "I must get everything clean and organized" frenzy, sort of the same as a 9-month pregnant woman doing all that overkill nesting stuff before the baby comes, only instead of a baby coming, it's chemo, Tamoxifen and radiation.
Thus I was standing in the corner of my bathroom this morning, vacuuming up the baking powder that yesterday I sprinkled on the carpet where the cat box has been sitting for too long. (My time would probably be better spent planning the next session of Writing Salon classes, rather than vacuuming. I should do things that require THOUGHT before I come down with "chemo brain." Oh my god, do you think maybe my inability to properly prioritize is an indication that my brain is already LIKE a chemo brain, just naturally!?) And if so, should I take that as a comfort?
After vacuuming that corner, I realized I had loaned my bottle of 409 to Jack when he was cleaning in prep for our birthday party. So I called him to say I was coming over to get it back. "Don't you have another doctor appointment today?" he said.
"Yeah, at the acupuncturist. At CPMC. The Health & Healing Center."
"1 p.m. Are you going to be able to go? It's okay if you can't. I understand."
"I can go. Shall we leave around 40 minutes beforehand, as usual?"
"Yeah, that sounds about right." I couldn't help but laugh. "So it's come down to that, has it? As USUAL!"
He laughed too. Just another doctor appointment, as usual. It has become so run of the mill, we've lost count at this point. I've been to more doctors appointments in the last two months than I've been to in my whole life. Seriously. I really think that might be true.
"Okay, see ya' then."
Yesterday morning I woke up at 5:30 a.m. thinking, "If I can't find and train a Writing Salon intern in time (before chemo starts in three weeks), then maybe I should try another tack. Maybe I should try, instead, to find a personal assistant for the next three to four weeks, someone to help me do the trillion things I'm trying to get done and can't possibly get done. I'll go to Craig's List and find that person RIGHT NOW! And I'll send that person a short email describing my immediate needs, and that person will write back, pronto, and say "Sure, no problem, I will be your personal savior and it'll only cost you $35 to $50 an hour." And when they ask me why I don't want them for three or four months instead of only three or four weeks, I'll lie and say, "Because once you help me get everything READY," I'm sure I'll be able to handle it from there."
So that's exactly what I did. Except for one thing. My email wasn't short. I have a problem with short. Always have, always will. My problem with short becomes exacerbated when I'm frustrated, scared, or overwhelmed. Also when I'm excited and happy.
Anyway, the email that I feverishly wrote up and then tossed out to my two potential personal assistants was wildly unabridged, due to my current "I'm under the gun, it's countdown time" attitude. I made no effort to first let it sit, then revise it, then let it sit some more, then revise (cut) it again. Instead I sent my prospective helpers an avalanche, a torrent, an ERUPTION of information, a molten river of "here's what I need help with oh please can you help me become the Super Woman I want and need to be?"
After I banged my finger down onto the SEND button, I sent a copy of what I'd just written to Ms. K, my NYC friend and writing partner, asking her to help me edit my tome down in case I needed to send it out again. I told her I realized it was "a bit long-winded."
She wrote back:
I hope you've calmed down a little. First thing: Don't send this out to ANYONE else. You'll scare them away. And if you don't, you will attract a CRAZY person.
Thank you, Ms. K, for that brilliantly blunt and amusing assessment. I shall heed your words.
Needless to say, neither of my prospective assistants, both of whom must be sane, has responded. :-)
"It's all a matter of interpretation. Life, that is. What happens to you is irrelevant. How you respond to what happens is what matters" — Me
I am dealing with Big Stuff right now. Trying to write about it feels overwhelming. Too difficult. Impossible!
I'll try anyway. It's 6:24 a.m. I'm in my kitchen, listening to the sound of the freeway traffic that surrounds Bernal Heights every morning. I don't mind the sound. It has been a part of my "I love Bernal" life for the last thirteen years. It's familiar. Familiarity is a comfort.
My house is a hellish mess. I figure I'll ward off my urge to scream or cry by taking it one step at a time. Like yesterday. . . I cleaned out the kitty litter box that sits in the corner of the bathroom at the end of my wonderful huge clawfoot tub where I have spent countless happy hours soaking, reading, dozing, talking on the phone, and even writing. I can't imagine life without a big clawfoot tub. Today I will put the wine glasses back onto the cupboard shelves — the glasses that were taken out for last weekend's Double Whammy Birthday Party, used, washed, but then never returned to their proper resting place. They've been sitting on my round oak table for over a week, along with all the other stuff that has not been put away because I have been too busy doing research in preparation for my rapidly approaching saga of Chemotherapy, Hormone Therapy, and Me — trying to get my head around it — trying, that is, to find the right balance of "healthy fear" combined with "a positive attitude." Trying to face up to the real scenario that could include such Major Side Effects as:
....uterine cancer, blot clots, nerve damage, and heart attacks. . . .to such "Minor" Side Effects as: hot flashes, nauseau, vomiting, diarrhea, constipation, headaches, vertigo, profound fatigue, aching bones and joints, numb fingers/toes/feet, blurred vision, mouth infections, nose infections, sinus infections, tonsillitis, fingernail and toenail infections, and I forget what else. Oh yeah, "chemo brain" (memory loss, impaired cognitive functioning). And oh yeah, zero libido.
Many women, they say, experience very few of these side effects nowadays, because chemo isn't the nightmare that it was twenty years ago. Some women can even drop the kids off at school, drive themselves to and from their chemo appointment, then go home, do a little housecleaning, fix themselves a healthy snack, pick the kids up, make dinner, joke around, go to bed, and actually fall asleep. Others, however, spend anywhere from a day to a week or more feeling continually nauseous, vomiting and, understandably, getting pretty depressed.
Bottom line: No one can predict whether your side effects will be mild or extreme. Each person responds differently. It's a crap shoot. So you (I) fervently hope for the best. . . but also feel compelled to plan (or at least attempt to plan) for the worst. In other words, you cannot NOT try to plan for the possibility that you might not be able to run your business, or any other part of your life "as usual."
As you vacillate between hoping for the best and planning for the worst, you also make every effort to go on living your normal, everyday life — the parts of it that have nothing to do with hoping or planning, and everything to do with feeding the cat, kissing your sweetie's cheek, watering the lavender plant, earning a living, enjoying and appreciating your loved ones, feeling your heart thump in your chest as you type a few words into your blog, and feeling your breath move in and out of your lungs as you read your students' daily writes — many of which make you smile with the thrill of teacherly satisfaction. You also try to keep up with your own twelve-minute daily writes:
Sunday, Oct. 16th:
A green checked duvet cover covers
me and Jack. Jack is lying by my side reading a book called
The Home Decorator's Bible. It's 10:47 p.m.
"I like this room a lot," says Jack, who three minutes ago succeeded in not killing the monster fly that is still buzzing around the bedroom. He thought he had killed it with the envelope that contained my new MasterCard. He stood on the bed and swatted at the fly, and then there was silence for a long enough time that he thought he must have gotten the sucker.
"If you got it," I said, "then I'm impressed. If you didn't get it, then I'm not impressed."
He hasn't yet gotten up to try his hand at killing the fly again. "There's some nice stuff in here actually," he notes, flipping through the Bible. I ignore him because I am typing, describing my current moment on Sunday, October 16th at 10:51 p.m. We're back home after a night out at The Kezar restaurant/bar in Cole Valley, where the original owners of the restaurant "All You Knead" on Haight Street hosted a 30th reunion party for everyone who worked there between 1976 and 1986. Jack wasn't one of the original owners, but he was friends with them, and he worked there doing things like making the front doors, painting, etc.
It was fun hanging out with this collection of ex-hippie type Haight Street restaurant collective owners, ranging in age from mid-forties to mid-sixties. But now I can barely find the energy to keep writing, after downing my two glasses of chardonnay at the party, which followed a day of doing dogged chemo research followed by a sad little stab at housecleaning. All I really wanted to do today was to stay home and keep plugging away at making some semblance of an attempt at not letting my life fall apart right now.
If I could have just gotten those five smarmy dishes in the sink washed, put the twenty wine glasses away, straightened and smoothed the twisted couch cover, cleaned off the kitchen table, paid those five teachers, and finished printing out those "How to Cope with Chemo" pages from breastcancer.org. If I could have just continued playing my music while working my way from the kitty litter box on through the rest of the house, all the way up to the stacks and piles of chaos on my bedroom floor. If only.
I wanted to put my house in order. I wanted to feel peaceful, purposeful, practical. But we went to the party, and I don't regret that. What a nice bunch of people! So warm and funny and lively. We left here at 3:50 p.m. and didn't get home until 10:15. Of course, I'm way too tired to finish putting anything into any kind of order.
Jack, who is not a pajama-wearing kind of guy, is now standing up on the bed again. He looks very cute hovering above me, wielding that deadly MasterCard envelope.
I am the wine, the time, the lack of time, the red, the glow, the grape, the field of vines. I am the time that is, as they say, of the essence. Going today to see Oncologist #2. Dr. Second Opinion.
I am a field of vines contained in a bottle, made of glass. Dr. Second Opinion works in Redwood City. He's been on 60 Minutes. Should I be impressed by that? Is it a good enough reason to put my life in his hands?
That's me, a glass bottle sitting on the edge of the table, the absolute edge, (relatively speaking). Or maybe it's the other way around: Relative edge, absolutely speaking. Somebody find me a statistician!
Sometimes I’m clear, sometimes I'm green. Always I'm curvaceous, shatter-able, a metaphor, a cliché, a simile, a mouth with a cork in it, a mouth without a cork in it — lately, more often than not, a mouth gone mad. Should I uncork my mouth today for Oncologist #2? How will he feel about that? Will he deem my mouth insane?
I'm the wine, a repetition of something promising and sweet. A 53-year-old woman who still enjoys her libido. A hint of headiness, fermentation, firelight, France, the south of France. All is alive and well in my estrogen-filled female body. For now. Today. On HRT, my trusty patch of absolutely relative sanity.
I am the wine. Translation: I am the passport to a now that's filled with the past. See my photo? That's me with every length of hair imaginable.
I am, in addition, sloppy nostalgia, delicacy, variation, elegance, a sip. I am a mother too. Let's not forget that.
All I ever wanted was for someone to sip me. Mmmmm. Properly. And swallow me with the reverence I deserved, still do deserve. I'm me, I'm you. I'm Every Woman. I'm all of us ladies, ladies. Men, stop with the gulping already! Give sipping a chance. You can be sippier lovers. Sipping works wonders.
Please. Listen. Give me room, inhale me, swirl me, let me rest on your tongue a while. Take more time with me, make me a special event. I can cling nicely, warmly, creamily to the side of your glass. I can be a fruity oak laced with vanilla and all sorts of other deliciously smelly nuances.
See the flame burning inside my fruit? The secret is in the fat of the fruit. Did you know that? Once we hit menopause, our female fat knows how to convert androgyne to estrogen. Something like that. In other words, once our ovaries retire, our libido is reborn from within our fat! My radiation oncologist told me so.
My fruit is burning quietly, here inside the bottle.Morning, noon and night. Can you hear the garbage truck out on the 7:30 a.m. street? I can make you heady over just about anything if I haven't gone flat.
Dr. Fred Marcus. That's his name. "Fred, what I'd like to get more clear on are the pros and cons of Tamoxifen versus those of Arimidex. Please keep in mind that I do not want to be tricked by some terrifying pronouncement of a relative percentage. Get it? I am on to that confusing and frightening deception. Granted, I'm no mathematician. But I'm on my guard. I am holding out for the absolutes.
Also please keep in the forefront of your mind that I am concerned not only about my survival. Try not to let this upset you too much. There's this other, nagging little thing that also begs to be considered. It's called: 'Quality of Life.' I know, I know. Such a sterile, low-key phrase doesn't rivet the audience with the same high drama as: 'Chances of Survival.'
But please, indulge me. Let me be the special event that I am.
It's the middle of the night. I went to bed at 9 p.m. but woke up at 1:15 a.m. I laid awake for awhile, but finally, after a bout of talking to my imaginary panel of rather obnoxious, conservative, mostly bearded spirit guides who sit behind a conference table in the sky directing the twists and turns of my life, I turned on the light. Now it's 2:30 a.m.
I look down at the book by my side: The Hidden Messages in Water, sent to me by a friend, and think, There are hidden messages everywhere. Hidden messages in the middle of the night. Hidden messages in my past. Hidden messages in my breast. Hidden messages in my cancer. Hidden messages in my cat. Hidden messages in my hair. Hidden messages in my confusion, my frustration, my challenges.
I liked the radiation oncologist yesterday. Dr. Marc Rounsaville (his real name). He listened. He treated me as if I were not an idiot. He seemed to understand and empathize with my confusion and my frustration at being given so much conflicting information about estrogen and its role in the treatment of cancer. He didn't dismiss my questions as a waste of his time or mine. He acknowledged their validity. He acknowledged that doctors cling to whatever the current dogma is, and that the great majority of them don't want their authority to be challenged or questioned. Also, it didn't hurt that he was cute, sexy and charming. When he turned to Jack and said, "And you are. . . .?" Jack replied, "I'm her support person," to which I added, "He's my sweetie."
Dr. Rounsaville smiled and wrote my answer down in his notes (I know because he said it out loud as he wrote it): "Here today with her sweetie." Then he said he was glad I had a sweetie to accompany me, and that it made him feel sad when so many women arrived alone for their first consultation.
Marc said he couldn't give me any definitive answers about what treatments to opt for. Or even anything close to definitive. But at least he was able to give me some honesty when it came to admitting how much is still unknown about cancer, estrogen, or how cancer and estrogen work together. He also gave me some respect. And he took the time to read a report I brought along to show him– the one from the breast cancer geneticist/HRT specialist saying that, according to more than two dozen studies, estrogen doesn't cause or exacerbate breast cancer. He read it, made a copy of it, and commented on the one paragraph that applied to me and my situation. This was more than last Friday's oncologist did (he gave the report a cursory glance, then tossed it down on the examining table, dismissing it as "irrelevant"). Had he bothered to turn to the second page, he would have seen that it wasn't as irrelevant as he thought. But he was too busy rolling his eyes, making sure I knew just how annoyed he was with me for not docilely accepting every single thing he said as The Gospel.
I digress, however, into the edges of an anger that could damage my attempts at calm and clarity, so I'll take a deep breath and steer myself back toward the world of hidden messages.There are hidden messages everywhere, waiting, like Easter eggs, to be found. In your oatmeal. In the sky. In your own eyes when you look in the mirror. I've always known this. I don't even think that most of the messages are all that hard to uncover. They're hidden, yes, but often only just below the surface. Sometimes they aren't even completely covered; you can see an edge sticking out from beneath the shrub, flower, pillow or book. For me, one of the biggest pleasures in life is seeking out and then listening to the hidden messages. Cancer is chock full of these messages, and that has not always been a bad thing. Often it has been interesting, challenging, eye-opening.
Breast cancer it was. Stage one, invasive, an unusual mix of ductal and lobular. The good news: the lump had been removed, and the cancer inside removed along with it. The less good news: Lenore had to go back for another surgery in order to learn if any stray cancer cells had made it to her lymph nodes. The weird news: The surgeon was going to inject a blue dye into her breast. The dye would then travel along glands leading to her nodes. This process might turn her breast blue for a day or two or three. . . She had forgotten exactly how long, there were now so many new medical details to keep track of.
She had been zigging and zagging more than usual the last few weeks. It had been hard to follow a straight line. She would start out heading toward St. Mary's Hospital and on her way do a zig over to death, then a zag back in the direction of life. Finally she would reach the corner of Fulton and Shrader, with no idea how she'd gotten there. Did straight lines really exist anywhere except in geometry books? Getting from here to there was quite the challenge, every minute of every day. She longed for a soothing yellow background, a sage green armchair, a plump red pillow. She wanted nothing more than to be a ZigZag Woman rooted firmly at her round oak table on a Friday morning, going nowhere near another doctor.
Today she hadn't zigged too far. She'd remained calm and tame. She hadn't let the cancer get to her. Instead she had lived with it. Side by side, just the two of them. Together.
Now it was evening and she was lying under her thirty-year-old pink comforter. Now there was sharp cheddar cheese resting on her teeth. Now there were empty paper bags in a pile next to a recycling bin, and a big heap of pillows on the piano bench at the end of her bed. Who knew where the calm had come from.
During her morning shower she had tugged at the edges of her bandages, wanting them off her body. But she'd been afraid to tug too hard. What if she pulled the stitches out?
She was desperate for sleep but couldn't sleep and was instead attempting to second-guess all her potential enemies: snipers, bosses, landlords, doctors, liars, betrayers, and whoever else might someday get in her way. But what was her "way"?
She couldn't tell you for sure why that little girl on the television documentary had begun to behave like a dog at such an early age, but she supposed it had probably been her means of escaping from a pair of brutal alcoholic parents. Living in the back yard shed, she had barked and wagged her way to survival.
It was late and she couldn't get her thoughts in order. Her forehead seemed to be carrying all the invisible weight of the day. It could have been worse, though. She could have been trying to deal with the aftermath of a lumpectomy when a hurricane was about to hit. She could have been ordered to cancel her next doctor's appointment in order to evacuate Or she could have been waiting to find out the results of the needle biopsy while swimming through a cesspool filled with alligators, excrement and corpses.
She closed her eyes, pressed a damp rag against her burning lids, and felt smooth Georgia O'Keefe hills rolling into sunsets, making love to deserts. She let her free hand drop down over the side of the bed to touch the cat's silky head, hoping to feel the texture of peace.
She wondered if someday the thought of death would be the same as the thought of peace. Not yet, but someday. She would be lying in a hammock in the balmy air, swinging softly, the faint sound of insects in the warm now of the sun. Just that and that alone.
Her 73-year-old artist friend Edith had lived through the holocaust. Her family had fled from Czechoslovakia to China, then from China to the United States. Now her four children were grown, her only brother had committed suicide at the age of 52, and she lived in an Echler house in Sunnyvale, painting and knitting her art. Her knit creations were made not only of yarn but sticks, sequins, tinsel, glitter, shells, rocks, tape, string, photos, whatever.
Last summer Edith had fashioned nests of yarn and deposited them all over Europe, leaving one nestled at each of the locations where she had experienced the worst pain. These were symbolic offerings that declared, or so Lenore speculated: I am trying to hatch new eggs, encourage new birth, new birds, new flights. I am doing my best to let go of the graves that keep pulling me down to the underneath.
Twinges and aches, real or imagined, kept invading her left armpit. On the one hand, she knew that the message might be: "Red Alert, Red Alert! Cancer! Cancer! Hurry Up! For Godsake What Are You Waiting For? What's Taking You So Long to Get to the Sentinel Lymph Node Biopsy? Don't You Know Every Second Counts?" On the other hand, maybe they signified nothing except the tyranny of her imagination. Maybe they were saying merely: "THIS IS A TEST. THIS IS ONLY A TEST OF THE CANCER EMERGENCY BROADCASTING SYSTEM. The twinges you're feeling are nothing to worry about, Lenore. Really."
Only two days, four hours, and 59 minutes left until the next surgery. When she woke up from the anesthesia, Dr. Patricia Lewis might well be standing over her smiling and saying, "Good news, Lenore. Nothing in the nodes. All a rosy negative." Or she might have a more serious and sympathetic look on her face, and be saying, instead, "The not so good news is, we had to take out twenty nodes that all tested positive. But don't worry, Lenore. There's much we can still do."
Lenore loved the idea of having "sentinel" lymph nodes. Two or three loyal guards standing at attention, doing their absolute best to prevent anything dangerous from getting past the gate.
There were too many germs in hospitals, though. You might get a nice anesthesiologist, however, who would help you forget about what you might catch or had already caught, someone who could inject a stream of peace into your arm and send you to a place where you would fall into dreams, wake up from those dreams still believing in them, and be wheeled back on your rolling bed through hallways and up elevators, not even minding that there was still a needle stuck in your vein, a jagged, clotted cut on your breast.
There was a blank space now on the wall where one of Edith's paintings, now being reframed, had hung. You could see not only the blankness but the rips in the bamboo-covered wall where the cockatiel of yore had pecked with a frenzy whenever she'd let him out of the cage. You could see several big nail holes, too.
Lenore missed that peach colored painting, a portrait of a demure woman, circa 1940s, dressed in her Sunday best, lace lapping over her pressed-together knees, pieces of tape stretched over her eyes, ears and mouth.
Tomorrow she would be zigging and zagging her way over to the corner of Bush and Hyde, en route to an appointment with the geneticist who specialized in breast cancer research. Dr. Pamela Kelly. Room 502, 3 p.m. Her friend Kerry was meeting her there. She and Kerry went way back. Kerry had been a member of the first women's group Lenore had ever been a part of, back in the late 'seventies. Now she had a degree in poetics and had earned her living as the director of a Montessori preschool until she retired last June. An early retirement, and not yet even 55 years old! Lenore couldn't help feeling jealous.
An inch and a half long, curvy red scar now sat upon the upper outer quadrant of Lenore's left breast. It wasn't a sharp-edged line, slicing the air with one clean cut, like the page of her book lying open on the coffee table. But who would have wanted a perfectly straight-edged scar carved into her breast? A symmetry of curves seemed preferable.
Other than the faint mark of a long-ago cat scratch on her thigh, Lenore had never sustained an injury that required even one small stitch. Nor a broken bone or burn. This was her first scar of note. Physical scar, that is. She had worried that it would depress her, but it didn't. A scar was the least of her worries. In fact, it wasn't a worry at all. It was something else entirely. A burst of blueberry in a mouthful of Rice Krispies. A lizard curled on a sun-baked rock. A secret. A nest. A past.
The past was always in her present. Like now. Today was, to a great extent, her memory of yesterday's angel who came to her in the form of Jack. Jack driving her to the hospital. Jack holding her hand in the underground parking lot and through St. Mary's now too familiar corridors. Jack closing the stuck window in Room 309 as she began to remove her street clothes and put on her hospital gunnysack. Jack's gentle fingers tying the back of the impossibly huge gown. Jack reading aloud from the morning paper, something about fire hydrants, as she folded her clothes and slid them into the plastic drawstring hospital bag. Jack showing her how to lower and raise the bed. Jack listening to her nervous chatter, never revealing a shred of impatience, his eyes always on her, his face ever present.
Her pee was blue. Would her breast be blue too? She would find out when she peeled off the dressing. Such a good nurse she had become. Ministering to herself. Bandages off, pain pills down the hatch, elevated arm, ice pack frozen, tiny sips of soup taken. Now that it was almost October in San Francisco, it finally felt like Indian summer. They'd enjoy it while they could, given that today was Thursday and rain was expected again on Sunday. But she was digressing into the subject of the weather, wandering away from her blue pee, which was really more compelling than dawdling over a lukewarm cup of Indian summer.
Last night she had apologized to Jack for being dull, unanimated, wiped out from the surgery, and all those residual waves of uncertainty. Everything that came out of her mouth, she complained, was boring. Jack laughed and remarked that a little boredom was a welcome relief after all the excitement she'd been handing him lately. Lenore supposed he was right.
Now the fear had embedded itself in her neck. She couldn't move her head around as easily anymore. Her neck was too stiff. It creaked and moaned like it had hinges that need oiling. Her body was itching, too. The Indian summer has crept underneath the dressing and was biting at her armpit, scratching at her ransacked breast. It was too hot and moist under there, and she was tempted to say that her wound was festering, but that wouldn't have been right. She knew it was actually healing.
Life was a series of preparations. They never ceased. There was always something to prepare for. A class she had to teach. A room she had to clean. A meal she had to cook. An answer she had to give to a question she would rather have never heard. Now she had added doctor appointments to her list of things to prepare for. There were always forms that had to be filled out ahead of time. A plethora of forms. In duplicate. Redundant. Over and over. Always requiring some piece of information that she didn't know by heart. A number. A date. A time. A place. A name. Every form sent her on a scavenger hunt through her less than perfectly organized papers, files, piles. Next it was to be the pathologist. Six forms. When was her mother diagnosed with ovarian cancer? What were the six other doctors phone and fax numbers?
Yesterday she had played hooky from preparation. She and Jack had gone to the Sunday flea market looking for party hats and wine glasses. They had asked every guest to wear a hat to the party — a double whammy birthday celebration in honor of Jack's 50th, her 53rd. Make it an interesting hat, they had urged in the invitation. A fun hat. A hat with a history, perhaps even a story. This meant they needed hats of their own, and maybe a few spare ones to foist upon the party poopers who dared to arrive bareheaded.
Of course, Lenore never wore hats and owned only one, a floppily wide-brimmed straw number that she had purchased in preparation for her and Jack's trip to Death Valley two years ago. Had she worn it then? While crossing the sand dunes? Or trudging through the winding, twisty maze of gullies? She could no longer remember. She supposed she could wear it to the party and tell her story about going to see 79-year-old Marta Beckett performing her vaudeville ballet routine at the Death Valley Junction Opera House. She could talk about Marta's raggedy gray boyfriend, Willet, and his gold sequined bowler hat, or about the peacock perched on top of the Death Valley telephone pole at midnight, or about Marta's painting of the golden swan on the wall at the head of their hotel room bed. But yesterday she had felt like searching for a hat that was newer, wilder, funnier – a hat that would bring out a radically different side of her personality. Some unknown side. A surprise even to herself.
The snug fitting, feather-covered vintage hat was a flurry of iridescent coppery-orange, kelly green, brown, black and white feathers. Jack said he thought they were hen feathers. What might such a hat coax out of her? What kind of a cluck or a baaaak? What egg? What birth? What fuzzy peep of shock at the concept of life?
When the car door slammed outside her window, Lenore didn't jump, feel a jolt, or become annoyed. Maybe she was more relaxed because she knew she had a pain pill she could take before she went to bed, to help her sleep, to muzzle the cross between an ache and a pain that was hidden beneath the thick white mound of gauze and tape. Today, the fact that she could stay so calm when a door slammed felt like something worth remarking upon.
Greta Cat sat in a patch of sunlight on the hardwood floor, her tabby back to Lenore, her silhouette a sunlit glow, her white whiskers on fire when she turned her head to one side to look at that thing Lenore couldn't see but knew must be there. As she licked her front paw, her shadow-head moved up and down inside the illuminated rectangle.
Today I went to my first oncologist appointment ever. Where to begin? We're talkin' major systemic "treatments" of the most barbaric kind. Kill those cells, eradicate that estrogen, nuke that breast! Leave no stone unturned. "No pain no gain" is the name of the conventional treatments game.
I'm gonna start looking for some good pot. That, and shave my head before the hair starts falling out in ugly clumps. I'll probably do it in two stages. First stage: Very very short/chic. Second stage: Bald.
Jack told me tonight that he's going to shave his head too. When I shave mine, he'll shave his. I adore this guy. (If I wear a wig, do ya' think he'll wear one too? Mmmmm..... let's not push it.)
Note from a friend:
I'm wondering how you're feeling after sleeping on your latest information. I also wanted to follow up on my comments on Blue Breast. What I was trying to say is that what you're working on is really important. Your personal story will artfully help people understand the frustration and the full range of emotions that come with breast cancer, not just the medical details that we read about on the Internet and in newspapers and from writers of lesser talent.
That was really nice to read. So onward I go with this blog.
All my logic tells me I should be a lot more upset than I am. Then again, I haven't really had to DO any of the awful treatment crap yet. It's still not really real.
I don't even have a clear cut treatment plan yet. If some doctor or team of doctors I trusted would say: This is exactly what you have to do and this is exactly when and this is exactly how...then I could focus on DEALING with getting through it.
Instead, I have made a choice to confront many unclear and conflicting options, stemming from several varying opinions and treatment "philosophies" from different doctors, in different places, who exist on several different points along the spectrum - from conventional to unconventional treatments.
But at THIS VERY MOMENT, I feel pretty okay. It's a lovely Indian summer October day, dear boyfriend Jack spent the night with me, I woke up before he did and came to the kitchen table, had my coffee, am now writing this blog post, feel good about that, and am planning to finish vacuuming and mopping the upstairs today - a project I started at 8 p.m last night, while Jack sat at the kitchen table fiddling with the beginning pieces of "our" Halloween costumes, which will involve something reptilian, it seems.
It felt cozy and comforting to have him here keeping me company in the midst of my new surreal reality. And this morning, since he is between jobs right now, he went with me to the nursery up on Bayshore, and I bought a bunch of flowers - pansies, lantana, violets, more... to plant along the entrance way leading to the Writing Salon door, and some more herbs - thyme and rosemary - for the four silver buckets hanging on either side of my kitchen sink.
Normalcy in the midst of surreality.
The reports are all in, and the main, unadorned fact, within which exists many sub-facts that must now be discussed and assessed ad nauseum by me and numerous doctors with offices in numerous locations over a period of weeks that will become months, is that my lymph nodes did not turn out to be all negative.
Here's how it worked: During the sentinel lymph node biopsy, the surgeon took out, in my case, the one sentinel lymph node that was positive, as well as the three closest surrounding nodes. (There can be as many as 30 nodes, maybe even more, I'm not sure.)
The nodes were immediately sent to the pathologist who sliced through the middle of each one and tested the center to see it there was any cancer. No cancer was found. Ninety percent of the time, if there's no cancer found in the center, you're home free. But 10 percent of the time, after the pathologist FINISHES examining the nodes by slicing through them all the way out to the edges in order to see if there's any cancer ANYWHERE in any node, cancer IS found. I am in that 10 percent group.
I am disappointed but not surprised. I had a gut feeling it would turn out this way, although I did my best to be optimistic. In a funny way, it is better to know than to continue existing within the anxious limbo of not knowing.
So. Now it is really real. I have a definite, final diagnosis, with words like metastatic and even mastectomy being bandied about, along with phrases such as "survival rate after ten years." This is not to say that a mastectomy is in my immediate future, or even in my future at all – just that it is now lurking in the background, as a last-resort, back-burner option. But hormone and/or chemo treatments ARE in my future, in addition to radiation.
Am I freaked out? Yes. I won't pretend otherwise, in the name of "positive thinking." Hormone and chemo treatments both SUCK physically, emotionally, mentally and financially. I don't mean financially as in: medical bills (although who knows how that will pan out), but as in: How will this affect my ability to keep the Writing Salon going?
But being freaked out doesn't mean I'm not trying to think positively. I am. Nor does it mean that I can't find a calm center, or muster whatever it takes to rise above the fear.
Let me just say that my first, overwhelming impulse was to want to hide this new information. Why continue to put myself "on display" via my blog? It felt too personal, almost as if I would be making light of a situation that should not be taken lightly. It felt, to be honest, creepy.
Yet here I am. Because I'm a writer, and because not writing about this would feel to me as if I were somehow ashamed of having cancer. Also, to not write about something this interesting would be a dumb move (assuming/hoping I can make it as interesting on the page as it is in real life).
We shall see.