My Great Breast Cancer Adventure

Walking & Writing

I have more to say (surprise!) about my last post. Much more. However, I feel like a change of pace, so..... just so you don't think I've become nothing but a boring BCO Blogger (Breast Cancer Obsessed Blogger), I'd like to add that I've been working away on the new spring session schedule of Writing Salon classes, and am rather excited about a new class we'll be offering called Walking & Writing, taught by Stephen Vincent.

Stephen just sent me a short series of some of his own writings that he did (or started) while out walking around San Francisco. The writings are coupled with photos that he also took while out walking, and the series is titled Ghost Walks. Here's a small, lovely excerpt from Ghost Walks.

More about Walking & Writing later, but right now I am inspired, partly by Stephen, to go out for my three-mile walk before the next downpour arrives. This time I'm taking my new Nanopod because, as much as I enjoy the peacefulness of walking in silence, I also sometimes get bored with that. I want to whisk myself around Bernal Hill to the sounds of music today. Maybe a little Zydeco and World Beat.

Did You Know?

Did you know that:

". . . In the state of California, chemotherapy, radiation, and surgery are the only LEGAL options for cancer patients. Physicians have lost their licenses and even gone to jail for venturing outside the narrow confines of this allopathic model for cancer. There are seven states in the U.S. that have passed an AMTA bill, or Access to Medical Treatment Act, meaning the licensed health care professional can offer whatever therapies the doctor and the patient agree to be appropriate. Such freedom is desperately needed if we are to truly win the war on cancer. . . . voice your opinion with your representative in state and federal legislatures regarding the need for more freedom and options in cancer treatment. Why do cancer patients have to leave the country or visit some "underground" clinic to seek alternative treatment? How can we possibly consider the FDA protecting cancer patients when much of what is FDA approved is either ineffective or barbaric?

"Unless we put medical freedom into the Constitution, the time will come when medicine will organize itself into an undercover dictatorship."— Dr. Benjamin Rush, signer of the Declaration of Independence

excerpted from Beating Cancer with Nutrition, by Patrick Quillin

I can't let tomorrow, Feb.

I can't let tomorrow, Feb. 26th, go by without mentioning that my son, Will (that's him holding up his hand-to-hand partner, Eloise, during their tour of Europe last summer), will be performing at the closing ceremony of the Winter Olympics. Not a bad gig for a young circus acrobat, eh? His mom, if she actually manages to catch a glimpse of him on TV, will probably cry. (7 to 11 p.m. on NBC Channel 3)

(TORINO, 24 FEBRUARY 2006) – Carnevale will be the leitmotif chosen for the Closing Ceremony which, on 26 February, will place the official seal on closure of the XX Olympic Winter Games of Torino 2006.

After 16 days of challenges which will see about 2,500 athletes competing, at 8 pm on Sunday the Closing Ceremony will unite athletes and spectators in one great universal embrace, with the rite of the extinguishing of the Olympic Flame and renewal of the appointment for the next edition of the Games. . .

. . .Torino will say goodbye to the Olympic Games with a great festival of fire and colour, masks and acrobatics, games and rituals. The 35,000 spectators at the Olympic Stadium and the numberless viewers glued to their TV in world vision will be involved in one great choral fest, inspired by the language of the Circus and Carnival, rich in eccentric, visionary, irreverent representations in which fireflies will become stars, men will become kites and heroes will be shown not as warriors but as athletes and champions.

Fat Chance

Lenore felt fat with relief. Fat with gratitude. Fat with pleasure. Fat with the Saturday morning's gift of work. She was working, you see, instead of ailing. She had set the alarm for 6:30 a.m., and the first day of her weekend was beginning with work, not play. Because of this she was fat fat fat with joy. Life had given her the chance to start over, to reassess and begin again on a new plane of existence. The chance of a lifetime. The fat chance of a lifetime.

She slipped up only once in the middle of her gratitude, when her hand twitched upward with a jerk as she attempted to rearrange her eyebrow with a loaded mascara brush. "Fuck fuck fuck!" she cursed aloud. She was in a rush, she had to get out of the house, beat the traffic, drive over a bridge, get there get there get there. Now she had to waste two whole minutes wiping off her mistake. Fuck.

And then, voila! The realization: What an idiot she was being. She had smeared a glob of mascara on her eyebrow. It would take an extra couple of minutes to walk to the bathroom, wet a rag, wash it off and start over. Her irritation had gone beserk, all out of proportion. What a bad and ungrateful habit she had cultivated all these years, so often allowing her tiniest irritations to yell and curse and run amok.

She breathed in until her ribs expanded as much as they would expand, then out. On the out breath she pulled her navel in as far as she could, deep into her abdomen.

Here she was at home, working instead of reeling from a first round of chemo. Glory Hallelujah and Amen Brothers and Sisters.  Here she stood looking into the mirror applying extra thick mascara to her lashes, instead of staring at a bald head and lashless eyes. Here she stood with rosy cheeks instead of an ashen pallor, and a bellyful of blueberries and good healthy grains instead of an empty, wretching gut.

"You silly girl," Lenore said to herself. "You silly, silly girl." Standing on the edge of her fat Saturday, holding the fat bird of joy in her mouth, yesterday's horizon wrapped its arms around her in an unexpected hug that, because it was unexpected, felt particularly good.

All Things Considered

The levee has broken. A flood of blood, bearing nothing but death and destruction, is rushing over the rooftops, ripping the trees out by their roots, overturning everything in its path, turning the city of your body into a murky black cesspool teeming with disease. Floating carcasses of once healthy cells. A stench like no other. It's impossible.

Will you be dead in five years? Will you wake up one day and discover that it's too hard to breathe? Will you be gasping on the floor, the way your landlady Helen was when her husband found her in the kitchen, picked her up in his arms and rushed her to the hospital? She hadn't seen it coming, the way it spread to her lungs almost overnight. She had staved it off for ten years, doing nothing but eating macrobiotic and avoiding all conventional doctors like the plague.

Ten years wasn't so bad though, was it? A lot of women do every slash and burn treatment in the book, and still die a lot sooner. At least Helen didn't put herself through toxic hell. Her husband Joe said she felt great up until a few months before the bomb went off. Then it was awful. They made a panicked run to a clinic in Mexico, where she only got worse. They ended up in a hospital back here in San Francisco, and she even agreed to chemo. The chemo worked like a magic bullet for a few months, but then the cancer came back even stronger and more powerful than before.

So. After two surgeries, extensive research, numerous doctor consultations, and months of consideration, you've chosen to forgo both radiation and chemo. 

Who knows. Maybe you've made all the wrong decisions every step of the way. Or maybe you've made all the right ones. Or maybe you've made all the right ones except for ONE, the one that will kill you. Or maybe you've made five perfect decisions and three crappy decisions.... or vice versa. Who knows what your odds are, really?

Are you a fool? Are you out of your mind? Have you no understanding of the immensity of the strength that powers death? Will you be sorry? Will you feel regret and wish you had it to do all over?

Will you leave your child without a mother before he has reached the age of 25? 30? What if his father dies too? He's already 64. What if your son is left to fend for himself in this great big lonely world, before he has even found a woman to love, before he's even close to having kids of his own? He has no brothers or sisters, no kinfolk to speak of. How could you do that to him? How COULD you?

It's impossible not to consider this.

Nevertheless, you have made up your mind.

 

River Sea Ocean

Lenore had tried various tricks, i.e. river–sea-ocean and overall stress reduction, but had not yet progressed to bonified meditation. She worried that this might not be  enough, that she wasn't moving as quickly as necessity demanded, that de-stressing was merely one step rather than the optimal two. She had to take two steps: 1) Less stress, and 2) Meditation. These two steps were supposed to go hand in hand, each one bolstering the other — in a perfect world, that is, a world where there were a billion hours available within every minute. Uh-oh, it was 9:43 a.m. and she had forgotten to take her twelve "take with a meal" pills at breakfast. Shit. She felt her adrenals kick into stress mode, causing a spike, no doubt, in her insulin level that  would set off a chain reaction leading to feeding the hungry cancer cells and making them oh so happy. Shit fuck fuck ommmm ommmmm ommmmm!!!!

How much time was she allowed to make the transition from Normal to New Normal? Under every rainy sky there was more than rain, so much more. River sea ocean. It wasn't ever possible to tell the whole truth, but she could feel it down at the bottom of her gut — the truth behind her choices, going all the way back to the decision she'd made in 1981 to become a single mother, followed by the decision to have a homebirth (which she'd ended up doing on the old mustard colored couch out on the closed-in back porch, much to her own delight and everyone elses' chagrin).

Pretty much all her friends at the time had advised her against following through with these unconventional baby and birthing decisions. But she'd known that she wasn't going to change her mind about having a baby on her own, despite all the perfectly reasonable reasons not to that everyone had thrown at her. She had also known that going to a hospital to have her baby would never work. Not for her.

She had listened to the same voices of opposition when she decided to quit her old job in order to start her new business. Everyone had protested, "For heaven's sake, Lenore, don't quit your old job until you've gotten the business off the ground! It's too risky! You've never started a business before!  Do them both for a while, Lenore, until you're sure you can make a go of it." But she'd known that she couldn't do both, that she had to leave the old job behind in order to give her whole heart over to the new one.

Now the voices of opposition were all about cancer. River sea ocean. River sea ocean. Cancer sea ocean. River sea cancer. And here she was responding: "That's right, folks. No chemo. Not for me."

So much more than rain. So much more than rain to be found under a rainy sky.

Personal Truths

After a time, some of us learn (and some more slowly than others) that life comes down to some simple things. How we love, how alert we are, how curious we are. Love, attention, curiosity. . . . One way we learn this lesson is by listening to others tell us true stories of their own struggles to come to a way of understanding. It is sometimes comforting to know that others seem to fail as often and as oddly as we do. . . . And it is even more comforting to have such stories told to us with style, the way a writer has found to an individual expression of truth. — Scott Walker

No more time for posting today. Jack and I are soon on our way to see tonight's Word for Word preview of Daniel Handler's 4 Adverbs at Theater Artaud. All about different perspectives on love.

The New Normal

Lenore clung to what was left of her day. She wanted to read a story from Alice Munro's latest collection, Runaway. But her eyes were so heavy. Did she really have the energy to go looking in a book for more germs of truth? The dishwasher grumbled and rinsed its way toward midnight. The kitchen garbage can was overflowing with rotting carrot pulp and a leftover deli chicken carcass. She had to decide about Arimidex or Raloxifene or whatever other of the treatments she had to choose from. How awful would the side effects be? How much more of herself was she about to lose? She was beginning to hate all the people who kept telling her what they would or would not be doing if they were her. Which they were not.

Hate had voluminous wings. She couldn't let herself spread those wings, couldn't allow herself to ride that bumpy current of emotion. Everybody had an opinion. Everybody always had an opinion. And felt compelled to voice it. Opinions made the world go round. That was a fact. She couldn't fight it, right? RIGHT?. . . . Or wrong?

The sweet potato pudding she made on Sunday had been a success. She wondered how she had ever been able to eat a "Rosemary Chicken with Spinach & Rice" Lean Cuisine. Her healthy new diet was markedly better than her former one had been, even without the pork tenderloin and fillet mignon. Something was prickling inside her gut, however, and the only thing she could do was sit and wait and feel uncertain. Prickling was fast becoming an ordinary sensation as she transitioned into the next phase of this adventure. Prickliness was a big part of the New Normal. After all, all had been altered. Every day the unexpected rattled her doorknob. Every day she jumped and said, "Hello? Who's there?" even though she already knew perfectly well. This was no stranger, nor a temporary visitor, nor even a weekend guest. No, her breast cancer had settled in. That was the nature of the beast, to make itself at home. Indefinitely.

The End of Cancer

                    "Huge."
                    "Historic."
                    "A milestone."
                    "A first."
                    "A dramatic turning point."
                    "No small matter."                   

If you listened to the mainstream media last week, you might have thought that the end of cancer was in sight. The cancer death rates are down at last, we were told, for the first time in over 70 years. "It's a notable milestone," said Dr. Michael Thun, head of epidemiological research for the American Cancer Society (ACS).

"That's momentous news," said Andrew C. von Eschenbach, director of the US National Cancer Institute. "It proves that our expectation of continued progress against cancer is well founded."                   

When you look more closely at the statistics in question, however, you find that the advance is more symbolic than substantive. A review of US death certificates by the National Center for  Health Statistics found that the number of cancer deaths had dropped to 556,902 in 2003. In the previous year it had been 557,272. That represents a decline of 370 deaths. That's right, just 370 out of 557,272 cases, or around seven hundredths of one percent (0.066) between 2002 and 2003. At that rate, cancer deaths in the US should be entirely eliminated by the year 3508, which is a little more than 1,500 years from now.

While deaths fell in men by 778, at the same time they rose by 409 in women. Didn't hear about that, did you? In an alternate universe, the headlines might have read: "Cancer Deaths Among Women on the Rise!"                   

(excerpted from Ralph Moss's "Cancer Decisions" most recent newsletter)

                  

P.S. to My Last Post

I should explain something to those of you who: 1) Are worried about me because I'm not going to do chemo, and 2) Don't really know much about what the various conventional options are for breast cancer treatments (alternative treatments are a whole other topic). Basically, these conventional treatments fall into three categories:

1) Surgery (i.e. lumpectomies and mastectomies) usually followed by radiation (studies show that radiation reduces risk of recurrence in the breast but, surprisingly, does not change odds of survival at 10 years)
2) Chemotherapy (intravenous drugs such as andriamycin, cytoxin, and taxol - ACT)
3) Hormone therapy (i.e. SERMs - selective estrogen receptor modulators - such as Tamoxifen or Raloxifene, or aromatase inhibitors, such as Arimidex; these can be as powerful, or moreso, as chemo, but the side effects are not as horrific.)

Which treatment you have depends on many individual factors, such as how your cancer is "staged," (is it Stage 0, 1, 2, 3, 4 or 5?) as well as many other pieces of the puzzle (i.e. are you pre-menopausal, peri-menopausal, or post-menopausal?). All of these factors (and there are MANY) go into the determination of your VERY particular-to-you diagnosis.

Sadly, even though each woman's cancer is utterly unique, the treatments are not. Rather, they are primitively broad-based. Each woman gets lumped into one of only a few hugely broad categories, and every woman in that category receives pretty much the same treatment.

My diagnosis (as is true with many women) fell into a gray zone because it was straddling more than one category. Well, there is controversy in the world of oncology regarding what the "standard" conventional treatment should be for those of us who fall into the gray zones. The truth is that NO ONE KNOWS what the standard treatment should be.

We all want to believe that doctors have all the answers already. Well, they don't. Not by a long shot. Usually what happens is that they just don't tell you that the option they're recommending isn't necessarily an option that everybody in the medical world agrees on. It's ONE option, and it's the option they're choosing to give you.

Most women don't question this, or even WANT to question it. To do so would be to open the can of worms (or more like a Pandora's Box) that I opened four months ago. Many women (understandably) don't want to go there.

Anyway, I'm digressing. What I meant to say when I began this post was this: For those of you who think that I've gone off the deep end by rejecting chemo, please understand that I don't believe that changing my diet and walking three miles a day is all I have to do to keep my breast cancer from recurring and/or killing me.

I have already had surgery, which is the MAIN and most important treatment for breast cancer. And, because I am ER/PR positive (estrogen/progesterone receptor positive) I plan to do one of the above hormone therapies (taken orally, usually for five years). I just don't know yet which one it will be.

The option to do "regular" chemo, in my particular case, was a debatable option (as was the option to do radiation, which I discussed in earlier blog posts). More and more oncologists are recommending chemo less and less for cases like mine. But I won't go into any more detail about the particulars of my case. Suffice it to say that, like it or not, breast cancer is a complicated disease.

Please don't assume that someone who opts to forgo chemo is being reckless, stupid, naive or delusional. It's not that cut and dried.

Two Wrestlers Come to Grips

I'm a Libra, the one who is always going and back and forth just like a set of scales. As with any set of scales, it takes a while to establish balance. Until that is achieved, you always have one scale that is higher, the other lower - and then vice versa. Up and down and up and down the two scales go, until finally they are equal, balanced.

A few days ago I thought I had come to a decision re: whether or not to do chemo, when, after my lovely acupuncture appointment with Efrem, I decided to go ahead and agree to the compromise of "chemo lite" administered by the Block Medical Clinic in Chicago. But a few things happened this past week, things that began to make me feel uneasy about my decision. These "things" included two more unsettling (argumentative) telephone conversations with Keith Block, plus the fact that I didn't FEEL right inside. Every day, instead of feeling more and more peaceful and accepting of my choice, I felt more and more anxious, upset and fraught with doubts.

Nonetheless, I forged ahead and spent all of Thursday trying to make arrangements to schedule a porta-cath surgery for next Monday, followed by the first 48-hour round of "fractionated dose chronotherapy" chemo, while at the same time trying to get free plane tickets through one of the special organizations that helps cancer patients who can't afford all those plane trips, while at the same time trying to figure out how to do all my Writing Salon work from afar. But I kept coming up against logistical obstacles, which included playing a frustrating game of phone tag with the Block Center's scheduling person. By the end of Thursday, no surgery or chemo had been scheduled for next week as it should have been, and I had no plane tickets. The day had been a total bomb. Outside forces had conspired to keep me from accomplishing the chemo preparations.

I went to bed filled with anxiety and a disproportionate amount of anger. Why was I so angry? It didn't make any sense. When you make the right decision, you don't feel angry, you feel BETTER.

At 3 a.m. I woke up, unable to sleep, unable to stop the avalanche of doubts. So I got up, crying all the way to the kitchen, made myself some tea, and then blew my nose, took a deep breath, and went into my walk-in closet "office" where I began to file more of the medical printouts from my huge and ever growing pile of information about breast cancer, medical test results, alternative treatment options, etc.

As I filed, I soul-searched. I couldn't believe that I was about to change my mind back to my former stance of "no chemo for me, thanks," but I felt myself going in that direction. Ugh. I hated thinking about how this was going to upset quite a few people: my doctors, my friends, my boyfriend - all of whom seemed to be relieved and glad that I had chosen chemo (not to mention the fact that I'd have to reveal this in my blog, and probably garner even more disapproval from concerned readers!).

Well, after the sun came up, I went off to Pilates Lesson #3, then bought a few groceries at Good Life. On my way home (walking, of course) I found myself mentally preparing to call Dr. Block and tell him I didn't think chemo would be on my healing agenda after all. Before calling, though, I wrote up a page of "self-defense" notes to refer to. Just as I finished writing the notes and collecting my thoughts, the phone rang.  It was Dr. Block, and before I could say one word of what I had planned to say, he launched into the most extraordinary announcement:

"I've been wrestling with this for the last couple of days," he said, "really wrestling with it, Jane. I've gone back over your case, thinking about everything you've told me, all your concerns, all the variables that are specific to YOU, all the details of your diagnosis - and I've come to the conclusion that chemo doesn't need to be a part of your treatment protocol."

I am paraphrasing and putting it into a nutshell. These were NOT his exact words.  What he actually said was more extensive, more moving, and more complex. But the bottom line was that he said, in no uncertain terms: "I think we should CANCEL THE CHEMO, Jane.

Is that amazing, or what?

You Touch it With One Finger

The carton of half and half sits in the door of the fridge, forbidden. Don't touch it, thought Lenore. Not even with one finger. That finger could be the trigger finger, the one that makes you long to pour a little cream into a little, just a little cup of coffee. You touch it with one finger and before you know it you're touching it with your whole body. You've gone from fantasy to sipping to gulping gulping gulping it down so fast your whole world is spinning, careening off course. Your orbit's all out of whack now, all because you were brazen enough, stupid enough, reckless enough careless enough arrogant enough to touch it with one measley little rebellious finger. The doctor said no dairy. The doctor said cancer likes milk and cheese and meat. 

But oh dear god the coffee makes you feel so frisky and bold. Sure, there's the hysteria underlying the ecstatically caffeinated exterior, but your finger, the half and half, the coffee at five in the afternoon, none of it really gets to the root of the problem, which is your anger. You are so ANGRY! Everything is making you angry, everything everything everything! The coffee grounds you spilled on the counter are making you volatile, screamy, furious. You want to kick Dr. Mike. You hate that he refers to himself as Dr. Mike.

There are those who say that repressing anger can give you cancer. Well, you are not repressing your anger. No, you are already in the hospital being wheeled into surgery for the third time in five months. You are already slapping Dr. Mike in the face, raising your tense voice as you tell him that your time is valuable, you have no patience for this Captain Kangaroo shit.

You didn't walk your three miles today, didn't count your steps, didn't make the appointment for the surgery, didn't get the free plane tickets that will get you to the surgery, didn't eat your twelve servings of vegetables, or even three. And you are angry. If they had called you back, if only they had called you back, none of what didn't happen wouldn't have not happened.

You haven't touched even the outermost surface of peace today, not even with one tip of one finger. The wild roses brambling around your heart are an awful mess. Nobody understands you at all, nobody nobody nobody! The potatoes are rotting, there's no front porch swing or even a front porch. You'll die if you don't start listening to yourself. You touch your anger with one finger, and the next thing you know, Julie is dead, Wally is alone, it doesn't matter how many carrots she juiced and drank, doesn't matter how many rounds of chemo she had.

Everybody thinks you're worried about being bald or throwing up or feeling fatigued. Well of course you are! But that's not what's at the heart of the matter, that's not why you have been questioning the value of chemo. Your questions go much deeper than that. Your research has been painstaking. It has led you into a greater understanding of all that is not understood. Your mouth opens and closes, opens and closes, yelling at the empty living room. Your anger eats the cheesecake.Your anger can't find its own finger, it's so blind. And Julie's dead and you need to go straighten up the pile of books on your bedside table now, because you don't like how crooked they are, you can't stand how crooked they are.

Pilates, Jarmusch, and Silly Putty

Pilates session #2 was way better than session #1, I'm happy to report. I got to do a lot more varied stuff, both on the mat and on the "reformer" machine. I liked how many of the movements made my spine feel.  And I liked the stretching parts. A good stretch always feels delicious; even I, Queen Couch Potato, know this.

Also, I forgot to mention, in my earlier post today, that I watched a good movie last night: Broken Flowers, with Bill Murray, directed by Jim Jarmusch. The ending was my kind of ending. Nothing tied up with a bow.

Jack and I were both too wimpy to walk two blocks in the too cold cold, in order to go to the Good Life Grocery tonight, so we scrounged in both our kitchens and came up with a jar of spaghetti sauce, some carrots and an onion (Jack) and sprouted wheat noodles, mushrooms, and seitan (moi). The seitan was sitting in my refrigerator for three weeks; I'd been thinking of taking my friend Jeff up on his offer to give me a special "seitan consultation" before I risked cooking any on my own, but Jack and I were both pretty hungry, so I decided what the heck.

Seitan Spaghetti Recipe

1 package seitan (the refrigerated, vacuum packed kind that looks sorta like silly putty), broken up into little pieces
Some mushrooms
Some onions
Some carrots
1 jar of spaghetti sauce, whatever brand you like
1 package weird sprouted wheat (or was it barley? I forget) noodles

Saute the veggies and seitan for a few minutes. Dump in the jar of sauce. Cook the noodles according to package directions. That's pretty much it. The seitan (a boringly bland blob of wheat gluten) tastes like absolutely nothing, but creates some additional bulk and supposedly meat-like texture.

In/Out Ho Hum

Monday was acupuncture (excellent and enlightening). Yesterday was a deep tissue massage (fabulous - Burt-from-Hawaii even massaged my liver muscles, for chrissake). Today, in 25 minutes actually, is my second-ever Pilates lesson. The first one was boring, as anything to do with focusing on your in/out breathing always is, in my opinion. I guess that makes me a poor candidate for almost every form of meditative/spiritual enlightenment that exists on the planet, eh?

I shall persist, nevertheless. Exploration is the name of my game these days. Pilates. Yoga. Qi Gong. Reiki. Whatever it takes. Of course, now I've got Chemo Lite looming on my horizon, which makes it much harder to think about fitness activities. I'm wondering if the steroid drugs will cause me to put back on the 12 pounds I just lost, or more. I'm wondering if four rounds will make me just as bald as eight rounds. Vanity vanity, I know. But I'm not going to pretend that I don't care. Fuck that. I care.

7:41 a.m. My appointment is at 8 a.m. I'm walking there, but it's only three blocks away. Guess I better get dressed in my non-cute non-athletic outfit - a pair of old black semi-stretch pants from the Salvation Army and a very old black cotton tee shirt.

My Aching Feet

I appreciate the smell of this evening's certainty — a whiff of walnuts mixed with sweet carrot juice and Fuji apple. I've been feeling so uncertain for so long (although I should give myself some credit, I suppose, and say that at least this uncertainty of mine was contained within the certainty that it was better for me to be uncertain than not. Better to be in questioning mode. Better to say, "I need to wait, I need to think, I need to delve deeper," than "Sure, go ahead, you're the doctor, doc.")

Tonight's certainty is still setting up, hasn't hardened into an absolute, yet. But I think it will within the next 24 to 48 hours. I feel certain enough, shall we say, to go ahead and post it on my blog. :-)

I've decided to go with the Third Path, as my friend K. so aptly put it — the third path being "Chemo Lite," a compromise between No Chemo At All and All-Out Conventional Chemo.

How did I decide? Well, I had arrived at a place where I couldn't bear to THINK about any of it anymore. I was sick of feeling so confused by all the conflicting information and contradictory statements coming at me from books, articles, websites and the doctors I'd seen who disagreed with one another. My brain was a mess of black water and black rocks. So I decided to stop looking for the answer, to just sit back and wait for something to come to me, something that would tip the scales. Even though waiting made me feel powerless and scared and in limbo (what or who was I waiting FOR?), I waited.

And something did come to me. This morning. When I went to my acupuncture appointment with Efrem Korngold. Basically, it came to me in the form of a few words from Efrem — words that conveyed nothing to me, information-wise, that I didn't already know. But because they were coming from Efrem, the words reached me in a new way. I asked myself why this would be, and I think it's because I trust Efrem more than the other doctors I've seen.

This isn't to say that I don't trust Mark Renneker or Keith Block or Gary Ross. I trust them all to a certain extent, and certainly MUCH more than I trusted any of the earlier doctors I had the misfortune to waste my time on. But Efrem is the only one who has actually been treating me, working at healing me, hands on, once every two weeks for the last three months. This kind of connection is different than a telephone consultation, or an office visit where you sit across from one another on chairs, separated by a desk, and have a discussion.

I don't just trust Efrem's words or good intentions, his intellect or his experience. I trust something else: His spirit. His energy. His presence. Something I see in his eyes and feel in his hands.

It's a funny thing to say this, because Efrem still strikes me as a rather stern fellow, not jovial, not effusively friendly. Bushy-browed stern. And yet. There's something he has given me that none of the other doctors have. I'm not quite sure how he does it, but the way that he listens and responds has a calming and centering effect on me. So I trust him.

Today when he said he thought the chemo lite could be an acceptable choice for me —  one that wouldn't ultimately compromise my desire to pursue con-structive rather than de-structive treatments, I believed him. When he said, "You can come out of this even healthier and stronger than you were before," I believed that too. Finally.

After all the needles had been pulled out, I thanked Efrem, left Chinese Medicine Works, and walked back home, sweatshirt tied around my waist, in the gorgeous warm sunlight, at peace with my aching feet as they carried me over glittering sidewalks and whirly plum blossoms.

The Self-Interrogation Continues

What was going on? "Every year, more and more people with cancer are given chemotherapy. Is it safe? Is it effective? Is it necessary?" Be careful Lenore, the whole sky could come apart. Research. Think this through. Meditate. Feel it through. Stay centered. Don't get mad at anyone. Don't take it out on Jack. Don't come unglued.

What? A liver flush, you say? Four apples, a quarter cup of olive oil and lemon juice, a big tumbler full of water mixed with epsom salts? After that, a shot of glutathione three times a month at $85 a shot? Get out the Excel, Lenore, you need to create a spreadsheet today, figure out how much all these supplements and non-covered alternative doctor visits are costing you per month. $1000? Nah. More like $1500. Will it be forever? Most likely. Why would it change? Your body won't stop needing any of this stuff unless they come up with The Cure.

"It should hardly be surprising by now that no detailed records are kept on the side effects, obvious or subtle, of adjuvant chemotherapy. 'There are no studies which have taken into account all of these factors,' said Dr. Alan Wilson. In fact, many oncologists seem disinterested in such mundane topics as quality of life or the costs to the patient. It has been found that when doctors are doing the recording, side effects are routinely underestimated.

'Most of the time, oncologists do not even see their patients during regular….appointments,' complained activist Rose Kushner, shortly before her own death from breast cancer. 'In the United States, baldness, nauseau and vomiting, diarrhea, clogged veins, financial problems, broken marriages, disturbed children, loss of libido, loss of self –esteem and body image are nurses turf.' But 'nurses don't publish studies of chemotherapy trials,'. . .

At night when she couldn't sleep, all alive and all alone, worn down by the ceaseless demands to make decisions, decipher, protect herself, she felt that she didn't belong anywhere but inside herself. At that point that she would roll out of bed, shrug herself into her robe, push her feet into the waiting slippers, and slouch toward the pre-dawn kitchen to begin the next round of self-interrogation. What did she want? Quality of life, or simply life?

'Lenore,' the last doctor had said, 'you are fighting a battle right now. Doing chemo now would be much easier than doing chemo after metastasis to some other body organ. Now, you're in a relatively small battle. If you wait, and if it comes back, and if you opt to do chemo at that point, it would be as if you were being dropped into the middle of the Iraqi war.'

Was it this black and white, this either/or? Her abdomen churned. She had no intuition and was not a heroine. Her intestinal tract was playing the martyr again. She hauled her confusion toward the toilet, for the fourth time in an hour. While Jack dreamed in the other room, she popped pills, drank herbal extracts, planned what optimal combination of fruits or vegetables and grains she should have for breakfast.

"Chemotherapy agents can cause the formation of drug resistant cells. They can thus paradoxically enhance the malignancy of the tumor and its ability to spread….

You are nothing but a big baby, Lenore. Toughen up. You must walk through the fire. If all the women before you have done it and survived it (or not survived it), then how can you not be brave enough to do the same? You must prove your courage. Your courage is directly proportional to the amount of pain and suffering you choose to endure. Right? Isn't that how it's supposed to work? No pain no gain? How cowardly to go against the grain. How embarrassing. Do you want to take the coward's path, Lenore?

….cytotoxic drugs can promote the occurrence of metastases; suppress the immune system; damage the vascular system; and act directly and in a thoroughly unpredictable way on tumor cells. Under such conditions, cancers can spread wildly.'

She trimmed a sentence, replaced a semi-colon with a comma, and fell backward into Sunday morning.

Helpful Email Exchange with a Great Friend

Hi Jane,

I have been keeping up on the blog, and am wondering how you liked Pilates. Also, wondering if you'll need to take hundreds of dollars a month worth of supplements forever or for a limited time.  Sounds like you've been on the phone again with Dr. Block.  My only thought in response to the ongoing chemo question is.... sometimes when you're stuck with an "either/or" choice the solution isn't one or the other but a third path.  Maybe the partial chemo is your third path.  I feel happy that Dr. Block cares about you enough to keep the dialogue open.  Also wondering how much of your hesitancy about the partial chemo is related to having to make the trips to Chicago, and how much is related health/philosophical issues. Love ya, K

Hi K,

My reponses below...

Also, wondering if you'll need to take hundreds of dollars a month worth of supplements forever or for a limited time.

Forever, I suspect, unless our healthcare system undergoes a radical change and starts to cover more than just the slash and burn treatments.

...sometimes when you're stuck with an "either/or" choice the solution isn't one or the other but a third path.  Maybe the partial chemo is your third path. 

Yes, I've considered this, although I thought of it as more of a "compromise," a hedging of my bets, which then made me wonder:  Why I would want to compromise? Either I believe that chemo is right for me, or I don't (or so my thoughts went). BUT.... another part of me thinks that a compromise might be the only solution, given how I can never really KNOW what the best choice is. (Or can I, within my deepest self? Or do I already, but can't see it?)

I feel happy that Dr. Block cares about you enough to keep the dialogue open.

Yes, I do too — he's certainly much more accessible and open-minded and cutting edge than any oncologist I met in the Bay Area, but he still leaned strongly toward chemo, which was sorta going against what he promised Mark Renneker he wouldn't do (try to browbeat/scare me into submission). I wished I'd had someone "on the other side," during the phone conversation, to counter what he was saying — a debate between Block and, say, Ralph Moss, that I could sit back and watch. Instead, I had to try and remember, off the cuff, all the reasons that led me to reject chemo. I wished I'd had my notes in front of me but I didn't because I wasn't expecting his call.

Also wondering how much of your hesitancy about he partial chemo is related to the difficulty and expense of making trips to Chicago versus the health/philosophical issues. Love ya, K

Good question, one I've been asking myself and having a truly hard time answering. Of course it would be a lot harder for me to make trips to Chicago. No doubt about it — it would be much more disruptive to my work life (to put it mildly) and much more stressful. I thought I was just getting back into a "new normal" in terms of regaining my daily routine or at least working toward a new routine. This would throw a big monkey wrench into that, for several more months.

But I don't think that the work/expense difficulties are the main basis for my great hesitancy; I think my reservations stem more from the basic philosophical/health questions - toxicity, short and long term side effects,  destruction of immune system, lack of holistic approach - the whole nine yards.

The only reason I'm reconsidering chemo at all, is because of Block's simultaneous nutrition regimen, and the possibility of doing only 2 to 4 rounds rather than 8. (Two, really, is what I'd be leaning toward, though I'm positive that once I got to Chicago, Block would start trying to get me to do four, and I dread that battle, but maybe I could get Mark Renneker to put a muzzle on Block....).

xo,
Jane

Hi again, 

I can see where thinking of partial chemo as a compromise could leave a bad taste in your mouth, i.e. feeling like to some degree you've abandonded your values/beliefs (not the best way to go forward), and perhaps opened yourself up to unnecessary risk.

Thinking of the partial chemo with the nutritional supplements as a third path might shape it a little differently, in that the partial chemo may in fact be more appealing/compatible with your values and beliefs, because it does genuinely address some of your concerns while offering some benefits.

Regardless, I agree with you that being browbeaten or frightened into a decision about treatment options is not helpful and not a good foundation to build your health and well being on.

I asked about Chicago threatment/travel/disjuncture issues because I want you to know that I will do what I can to help with the Writing Salon or whatever if you go down that path.  I'm with you whatever you choose, and have great confidence in your ability to set a productive course.

Love, K

Healthy and Dumb

Yesterday I made my own vegetable sauce/dip stuff, using a mix of miso, rice syrup, water, peanut butter, garlic and ginger. Smooshed it all together, and voila! Not bad. Not bad at all.

Tonight, though, I couldn't bear the thought of cooking after working all day and then walking three miles, so on the way home from The Walk, I stopped at Good Life Grocery and got a ready-made "Masala Noodle Indian Vegetable Stir Fry" from the deli. Everything in it was healthy except probably for the noodles made with white flour, but one can't change one's ENTIRE diet overnight or even in six months for chrissake. I was proud of myself for adding a hearty serving of steamed broccoli as a side dish, and even prouder when I hit upon the idea of dribbling yesterday's veggie sauce on the broccoli and then sprinkling TRAIL MIX on top! It was delicious. Broccoli, miso, peanut butter (natural, of course), rice syrup, ginger, garlic, raisins, almonds, cashews, sunflower seeds, peanuts and whatever else was in the trail mix. It tasted positively gourmet, and I only had to wash one small bowl, one fork, and the pot I steamed the broccoli in.

Because dinner went so quickly and easily and without any fatty, chocolatey, or sugary mishaps, I now have time to watch a silly thriller Netflix DVD with Jack, the one with Jodie Foster called Flight Plan, I think that's the name of it. We saw the trailer for it when we were in Chicago at the lovely Hilton Garden Inn. Jack thought it looked dumb, as did I, but I thought it might be an entertaining dumb. I wanna know what happened to her kid???????  (Don't tell me.)

Mind/Body/Spirit

I can't decide about chemo. I thought I had already made my decision, but now, after listening to an hour of more arguments from Dr. Block, I'm reconsidering. Again.

I have a cup of medicinal tea before leaving the house for my walk, so Chinese herbs (PDH: Purge Damp Heat; HLS: Heal Liver Spleen; TB: Tonify Blood) are running through my veins as I roam the hill looking for The Answer but sensing that I'd be better off just figuring out how to be at peace with the process.

I try not to wrestle with the intellectual, data-based pros and cons. I'm hoping, instead, for a moment of grace, a flash of insight, an answer based in something other than facts and statistics. It hasn't come yet, but I think its edges may have begun to appear in my peripheral vision. As I reach the top of the hill, I get a glimpse of how it would feel to be at peace no matter what direction I decide to go. (It would feel very very good, lemme tell ya). Halfway around the hill, I feel a whiff of faith, as I recall how my universe has been prone to tossing out blessings every now and then, usually when I most need them). 

After making my way (sometimes even jogging!) around the paved road that wraps itself around the hill, I step off the pavement and head down a barely noticeable dirt road off to the side. It leads me to a street called Chapman Street, which runs just above and parallel to Powhattan — a street I'm sure hardly anyone knows exists except for the people who live on it and their visitors. This is a good find. I feel like I'm in the country, not the city. Twilight, birds in rustling trees, sylvan quiet. Finally, I feel a hint of trust in my doctor, although I'm still not sure who to trust more – myself or him. It's so strange that it has to come down to this.

Going back toward Cortland, I head down a steep block of Prentiss and hear people chatting in Spanish. When I turn onto Cortland, the aromas of food from at least four different countries swirl around me in a way that is so delicious I can hardly stand it. The evening feels summery, balmy, even though it's February. Record high temperatures.

"Mind/body/spirit, mind/body/spirit, mind/body/spirit," I chant this phrase over and over to myself, syncopating each word to each step. Corny, I know, but it feels helpful to me. The pedometer clipped to my waistband measures my progress.

When I get back home I break the "no dairy" rule and eat a little cottage cheese with slivered almonds and celery seeds. Yum. Remember the very last scene in that movie, Driving Miss Daisy, with Morgan Freeman and Jessica Tandy? He's feeding her pie. Every time he gives her a forkful, she swallows and then presses her lips together in a way that looks like she's died and gone to heaven. That's how I look when I eat my eight or nine spoonfuls of cottage cheese.

 

Hah! (Better Late than Never)

"I think that the next time someone asks me what advice I'd give to aspiring writers, I'll say, 'Get enough exercise.'" --Caitlin R. Kiern

My Three Miles

Waiting for words, sleep, self-knowledge and clarity, I am alone here in my bed with the cat, a cup of  Bengal spice tea, a bottle of calcium d-glucarate and one of indole-3 carbinol. But I walked my three miles today. The sirens are no longer wailing in my head, and I am waiting — with a calmness that suprises me and for which I am grateful —  for my mind to catch up with my heart. What do I already know but don't yet know that I know? Who knows? But I walked my three miles today.

I feel alert, receptive, almost ready even. At just this point in time and receptivity, a piece of Kabbalistic wisdom leaps off the page of the book in my hand: "There are a thousand and one gates allowing entry into the orchard of mystical truth. Every human being has his own gate. He must not err and wish to enter the orchard through a gate other than his own."

I think: "Will chemo be my gate? Or will it be the rejection of chemo?"

I think: "Either could be the gate. You can get to the orchard via either route. In any case, you did your three-mile walk today."

Tomorrow I'll rise at dawn and by 8 a.m. will be at my first Pilates session ever. After my hour on the reformer machine, I'll come home and think some more about the possibility of doing "chemo light," a compromise between me and the Block Medical Center. Instead of doing eight rounds of standard "dose dense" chemo, I would do only two (possibly four) rounds of "fractionated" dose chemo (much less toxic, with significantly fewer  of the most dangerous side effects, such as heart damage)  — and still, so it seems, reap signficant benefit (apparently the greatest benefit to be had from chemo comes from the first couple of rounds). In addition, I would receive nutritional supplementation at the same time that I received the chemo. Literally. I would be hooked up to TWO intravenous lines, so that I could get the supplements right along with the chemo. But in order to do this, I'd have to fly out to Chicago and stay there for three to four days for each round of chemo, because Bay Area oncologists scoff at (and summarily dismiss) the idea of nutritional supplementation to help with chemo.

The most important thing to focus on right now, though, is that I walked my three miles today.  :-)

Sweet Potato Pudding Recipe

From: A Banquet of Health, by Penny Block (Keith Block's wife) - all vegetarian recipes, many of which sound like too much trouble, because I've never heard of (or have heard of but never used) things like kuzu, agar, wakame, tempeh, shoyu, kombu, miso, soba, arame, bifun, fu, gomasio, etc.

However, I'm in exploration, transition and CHANGE mode. This recipe sounded do-able, so I tried it. 'Twas easy, yummy, and kept me away, tonight, from refined sugar and bad fats:

4 medium sweet potatoes, cooked and peeled
2 Tbls. brown rice syrup
1-2 Tbls. almond butter
2 tsp. vanilla
1/2 tsp. cinnamon
1 pinch sea salt
Optional: Add 2 Tbls. half and half to make it creamier

Puree all ingredients in a blender or food processor (or just mash it up until it's as smooth as you can get it). Serve warm or chilled.

Thick Smoke

The thick smoke of change enveloped Lenore. Flames floated in the kitchen mid-air. Out the back window, the sky appeared unsurprised and unperturbed by the devouring machinations of this healing journey she was on.

As the dishwasher dozed gently between rinse and dry, a kindly piece of vegan bread stepped in to divert her from the chaos of transition. Wheat endured.

Yesterday she had walked four miles, all her strength hovering on the horizon of each and every step.

Today she looked back and had a thought: "My memories are wearing new shoes.'

Alternative Medicine

Lenore was taking the short route to China. She rushed through her chores and then headed out on an imaginary freighter, taking her loom with her. Strand by strand she alternated between the warp of information and the weft of insight. Her breast ached as she wove. Looking out over the ocean, her eyes were both desperate and clear.

The wind carried the scent of omega-3 fish oils. The sky dilated as the shore shrank. Lenore inhaled deeply. The boat turned into a sidewalk, the loom turned into a meditation. It was a Sunday morning. Sunlight streamed in over the vitamin bottles on the counter next to the blender. China was a story structured around a plot that contained many needles, herbal tinctures, beginnings and endings. The wind of qi gong began to blow in great twists of unbridled energy.

Great journey to China or not, she had to find the adaptor cord for her laptop. Where had it gone to? She couldn't find it anywhere, not in the box, not on the shelf, not in the trunk or the bottom of the rolling file cabinet. Maybe she needed a new spiritual practice, something that would help her get better at searching for lost objects, say, a heart meditation that would alleviate her impatience, help her find the fruitful side of her snarling, nipping anger.

Where was the adaptor cord? She didn't know, couldn't answer that question. Things happened, got lost. She was not much of meditator, but even so, she had to ask herself, Was there some other way of seeing things, something deeply hidden in the obvious?

She looked for the adaptor cord behind the drapes, in the drawer, under the coffee table. It had to be somewhere. She couldn't find it. She couldn't answer the question. She couldn't say where she went in the dead of night, she didn't know if dead people turned into angels, she wasn't at all certain that the naming of a disease had any usefulness.

Maybe she needed to buy a plant, or repot the old one on the kitchen table. Would this qualify as a meditation?  Would it be cheating to search for a spiritual practice solely for the purpose of locating a lost adaptor?

Wait a minute. Nevermind. There it was. Under the bed. Exactly where it had always been.

Counting My Blessings, Part 2

A year ago I expanded the Writing Salon by opening a site in Berkeley. The Berkeley classroom has high, exposed-beam ceilings, big white walls and good light. I thought, "What a great room for displaying art! Why not try to feature different art shows on the walls every session?"

Why not, indeed?  Of course, implementing one's ideas can be a tad more difficult than the mere having of those ideas. I had no connections in the art community. Once I started (blindly) trying to find an artist to exhibit for the first show (looking around on Craig's List and other Internet leads, asking friends and teachers), I realized that this was going to be — four times a year —  a time and energy-consuming project: Find artists whose work I liked (how? when?). Talk to them. Meet with them. Show them the space. Figure out which pieces would be hung, and where. Meet again to actually hang the show, which would include first repairing the nail holes,etc., from the last show. Get equipment for hanging the show: a tall ladder, a level and nails and hammers. Etc. Etc. Haul the stuff over there.

I would need to become the curater from start to finish - that, or take the time to work out how to share and coordinate the curating duties with each of the artists. And what about organizing a reception for the artist? A nice little event to publicize the show? More work. Publicity. Invitations. Announcements. More time.

I don't mind doing ANY of this work. I love the whole process, in fact. It's just that I'm usually bogged down in doing the basic, day-to-day duties of keeping the Writing Salon afloat. I rarely have the time or energy to devote to "extra" projects, such as creating an Writing Salon anthology of student writings, or featuring student and teacher writings on the website. Or adding cool podcast to the website. Or creating Writing Salon "weekend or weeklong retreats," separate from the regular Writing Salon classes, say, in Napa or Mendocino or Italy or France. Or having a regular Writing Salon reading series. Or throwing "end-of-session" parties like I used to do before I got so burned out that I had to take a break (which has now been for about a year and a half).

I have a mile-long list of "creative visions" re how I'd like to improve the Writing Salon. Bringing those visions to fruition, however, is the challenge. Sometimes people volunteer to help or to do trades for classes, but they tend to want to do the fun stuff, not the daily grind stuff, which leaves ME still stuck with doing the grind stuff.

Anyway, right before I went to Chicago, I realized that I'd been so distracted by the breast cancer stuff, I hadn't organized a new art show to replace the one that was about to be taken down. No artist. No plan. No nothing. Classes were starting in a week, and the Berkeley classroom walls were going to be blank, bare, empty. I was depressed that I hadn't been able to get it together.

In a last ditch attempt to find an artist and get a show up within six days, I asked my wonderful temporary "helper," Dietlind (who has been giving me five hours of "grind" help each week for six weeks, in exchange for a class) if she by any chance knew of an artist who could throw up a show, fast.

Much to my surprise, Dietlind said that she did collages made from photo images taken from The Sun Magazine, combined with text (inspirational quotes also taken from The Sun Magazine). I've been a fan of The Sun for years, have subscribed to it off and on, and have had two personal essays published in it. I thought, This feels serendipitous. I'm going to take a chance and do a show of Dietlind's collages, even though I haven't even seen them.

But then Dietlind told me that her collages were: a) Black and white, and b) Very small. Uh-oh. What I needed was just the opposite; big, colorful pieces. Nevertheless, I decided to go with the collages, and try to somehow fill in the upper portions of the walls with a few big, colorful pieces of arty handmade paper from Flax's. (This was an idea I'd had a long time ago but never had time to act on. I thought it might be a good stop gap measure if I couldn't find an artist in time for a new session.)

So. . . last Thursday I went to Flax's to look for beautiful paper. Did I have time for this? NO! But I went anyway because, since the breast cancer diagnosis, I've vowed to spend more time on the visionary (fun and creative) aspects of running and expanding the Writing Salon, and less time on the grueling, draining, daily grind stuff. Did I have fun at Flax's? YES! I pulled open every single flat file, and picked out a great assortment of handmade papers, in a mix of colors and textures and sizes, that I hoped would somehow look good on the walls, along with Dietlind's collages.

On Friday evening after Dietlind got off work, she and Jack and I drove over to the Berkeley classroom and spent over four hours shuffling pieces of paper and collages around on the floor, holding them up on the walls, combining and recombining until we finally came up with what we thought looked pretty darn good.

We worked with what we had, in the time that we had (only that evening; classes started the next morning).

I had such a good and CREATIVE time. When we were done, we had transformed the classroom, and I felt such a sense of gratification and satisfaction. I see this as part of the healing "protocol" I'm putting together, along with my upcoming new fitness regimen (walking, Pilates and yoga), new semi-vegetarian, wildly healthy diet (today thus far: OJ with whey powder, and brown rice and soy milk sweetened with raisins and Stevia, for breakfast), nutritional supplements (too many to list here), Chinese herbs, acupuncture, and stress/workload reduction.

As a result of taking the time to do this "extra but fun" project, I'm now behind on getting out the 1099 forms to two dozen teachers. The forms should have gone out in the mail yesterday. But you know what? I really doubt that anyone is going to notice. Who the heck does their taxes on Feb. 1st?