My Great Breast Cancer Adventure

Email Exchange with a Writing Salon Teacher

Hi Chris,

How did the Saturday Voice workshop go? Was the roster correct? Did you by any chance get, prior to leaving for the workshop, the "closing-up" checklist that I emailed to you ? If not, I'll try sending it to tonight's teacher.

Thanks,
Jane

Hi Jane,

The Saturday workshop went really, really well. I think that might have been the best one yet. A great group of intelligent people that respected one another and really got into the writing. And no one was late! I think we'll get at least two or three sign-ups for Wednesday from that group.

Two people did not show: Nancy and Linda.

I didn't receive the closing-up checklist before I left in the morning, so I printed it out yesterday. I can bring it to my Wednesday night class, though.

The artwork looks great, by the way.

Talk with you soon.

-Chris

Hi Chris,

I'm thrilled it went so well!

You know, that Linda is strange. A mystery woman. She signs up for classes every session, and then NEVER (or rarely) SHOWS UP. It's like having a private benefactor. Odd but cool.

I'm glad you like the artwork. I'm writing about it in today's blog, in fact. But first I have to go spit some of my saliva onto a cotton wad and then put it in a test tube. Then WALK to my acupuncture appointment. :-)

xoxo,
jane

So Many Orbits

Seitan and sweat. Lenore was working hard at overhauling her life, a project that was discombobulating and disorienting. Fake meat, interval training, and 200 mg CoQ10 lozenges kept getting in the way of all that felt familiar and secure — a diet that included, for instance, mashed potatoes and gravy with a tender, slow-cooked pork roast, or a week that always managed to make room for a few hours sitting at her writing desk rather than standing atop her cheap elliptical strider from Sharper Image.

Calling out to the Universe for help, she looked around her empty living room and knew that, cancer or not and like it or not, she was just as alone as the next person. To each his own; that was pretty much what it boiled down to. This wasn't a news flash or a tragedy, for her or for anyone else. It just WAS.

Feeling crumpled and confused despite her enlightenment about the reality of aloneness, she climbed inside the creamy red egg yolk, curled into a comfortable fetal position, and waited for the beige outer shell to initiate the rocking motion that would sway her back and forth, back and forth in an orbit that would carry her slowly around the heart of her day. Tomorrow she would try the purple yolk, Tuesday the green one, Wednesday the blue. So many eggs, so many yolks, so many orbits.

This morning had been a blah oatmeal color. Steel cut oats with soy milk, raisins and a dab of low-glycemic agave nectar. Now running on reserve power, she waited, without much optimism, for her craving for a fat fudge brownie to evaporate along with her post-exercise sweat. On her kitchen counter lay the instructions for the three-part liver detox home test kit:  No caffeine 12 hours prior to beginning the early morning saliva test. No fruits, nuts, or seeds throughout the following day, prior to collecting the next night's urine samples. No food or water the morning after — not until she went to the lab to get the blood test for. . for what? She forgot. No matter. First she'd let them suck some more of her blood into the tube, and find out later what they wanted it for. She wondered how much this next round of tests would cost. All out-of-pocket.

Yesterday had been a good "count your blessings" kind of a day. Today, however, had been less Oprah'ish. Today, although she had planned to finish and post yesterday's entire list of blessings, her discombobulation had won out over gratitude.

Today she should have exercised for longer than twenty minutes. Her hamstrings were way too tight. The whole anal count-your-calories and fuck-bad-fats diet regimen was making her edgy bordering on pissed-all-the-time. How many flowerets of broccoli comprised one serving? How big was a 3-ounce portion of salmon? She wanted a stack of pancakes and she wanted it NOW, floating in butter and maple syrup. She also wanted to sleep for twelve hours straight. She wanted to dream lucid dreams, to be awake but not awake, to be left alone but not left alone. She wanted her old routines and habits to be given back to her. Her life before cancer had been filled with the comforts of familiarity — hard-won, good familiarity — at every turn. She resented this forced march into uncharted terrain. She hadn't gone looking for this Great Breast Cancer Adventure.

Or had she?

Counting My Blessings

My last 24 hours were especially great. Not in chronological order, here are some of the elating things that I experienced in that time period:

1) I woke up this morning from a dream in which the doctor looked at a tissue sample from my breast cancer and exclaimed, "Of any breast cancer you could have gotten, this is the absolute best, least aggressive kind!" (This isn't a hundred percent true in real life, but I take the dream as a good omen, an optimistic whisper in my ear from my innermost self.)

2) The nutritionist at Block Medical Center told me that ONE cup of coffee per day (if organic, and if I use unsweetened soy milk instead of my beloved half and half), is okay for me to have. For the last couple of months, I had banned myself from having that dear cup of coffee, which I used to have every morning (and took for granted). Now I've got it back! Oh my god, the joy of that SMELL right after you grind the beans. And then the un-green-tea-like burst of caffeine power to start the day, well, you know. It's nature's magical amphetamine.

3) Ooops, it's 9 a.m. I have (no, I GET) to go prepare the Writing Salon classroom for today's "Off the Page and into the Body" workshop. Turn on the heat and lights, make the coffee and set out the snack, tidy up, put the sign in the door, make sure the new electric tea kettle works, plump the pillows, and check the tulips to make sure none of them are drooping yet. If any have fallen over during the night, I'll stick the stem into one of those pale green plastic straws that florists use. I love those straws.

I'll be back to finish this list later.

A Piece of Music

"That snow storm's gonna come back again tonight,"Lenore said to herself. "You can hear it on the horizon." Looking out the window of the EL Train as it rattled her bones toward downtown Chicago and the Art Institute, she saw brightly lit apartment buildings full of unspoken secrets, but none of those secrets were hers. She flashed on the image of her little brown-shingled cottage back in San Francisco, its old weathered wooden turquoise gate that she loved despite its dilapidatedness (it was always so hard to close after a rainstorm, when the wood swelled up). She felt herself entering into yet another layer of her risky cancer collage. Was she playing a game of Russian roulette, as one doctor had implied? Was the omission of chemotherapy the same as putting one bullet into the revolver, giving it a spin, putting it up to her head, and pulling the trigger?

Chicago's brick walls whisked by like a string of mantras. Each pattern of each building's brick design grid, each variation in the hue of red or terracotta or gray made her want to cry, the gritty beauty was so understated.

She tried to bring back the memory of her session with the psychologist who had given her a Relaxation for Dummies lesson. Breathe in slowly. Imagine that your abdomen contains a balloon filling up with your breath. Now slowly release the air from the balloon, and as you reach the end of your exhale, whisper your mantra. During that lesson, she had whispered the name of her son each time. What better mantra could there possibly be on earth, or even in heaven?

If not Russian roulette, then what was she playing? Maybe not a game at all, but a piece of music that flowed from blues to jazz to ballad to lullabye, and then into a wild African drum beat that made her want to dance around her living room like a maniac, or run a marathon across the state of Iowa. The music was vast, heartbreaking, transcendental. Her body was indefatigable, she was running in a zone that existed outside of space and time, flying along, racing toward the finish line, a yellow ribbon, a crowd of cheering onlookers, a better understanding of her role in the world, of agave nectar, of anti-apoptotic proteins, of conjugated linoleic acids, of pedometers.

Quack Quack Quack

Warming my cold toes in front of the wall furnace at 12:56 a.m., I am clearly still harboring some of the icy Chicago winter that Jack and I braved for the last three days while I went to two days' worth of appointments at the Block Medical Center.

Now that I'm back home, I find myself standing at a crossroads, on the verge of making one of those "this will be one of the most important decisions you'll ever make in your life" decisions.

Going to the Block Center helped me pull together some loose ends, information-wise. And I was relieved to find that this "integrative" cancer treatment center was just that: integrative — offering conventional Western treatments but also offering counseling and solid information on other components to healing, such as nutrition, natural supplements, physical fitness, and spirituality. It's not as TRULY integrative as I'd like it to be  — for example, I wish they offered more alternative treatments and information, such as more info. about iodine and breast cancer, say, or hyperthermia, or the option to try things like digitalis, or Chinese herbs, or Iscador [mistletoe], which has been used extensively in Europe for a century but just hasn't been "proven"  to work according to the "clinical trials" that have been devised by Western medicine and are the only means of "validation" in American/Western medicine.

Nevertheless, given the lack of integrative treatment options in the Bay Area (or anywhere else in the United States, for that matter), I'm glad to have found my way to the Block Medical Center, where my desire to combine conventional and unconventional treatments is respected and honored, so long as I don't try something that they think is outright dangerous.

This means that I'm much closer to having "my own unique treatment protocol" now. However, decisions still have to be made that can only be made by me, and only after the latest battery of test results come back.  Not even Dr. Keith Block, Executive Director of the Block Medical Center (who gave me a really interesting and informative two-hour consultation instead of the standard 20 minutes), can tell me which options to accept or reject.  Yes, he can give me information and answer many of my questions, but because there are still so many unknowns when it comes to cancer treatment, in the end it boils down to WHO I AM and WHAT FEELS RIGHT TO ME ON A DEEP GUT LEVEL. In other words, I have to really get in touch with ME. Oy fucking vey. I have to be able to tell the difference between choices that I might conceivably make based on fear or denial, versus choices that I might make based on my deepest inner wisdom and self-knowledge. Sometimes it's quite difficult to distinguish between the two.

For example, if I choose to reject chemo, will I be rejecting it because I'm just a big chicken shit who doesn't understand the gravity of my "naive" decision, or because I know that, FOR ME, chemo would feel so inherently WRONG (toxic, wrong approach to healing) that it would depress and scare me to the point that my stress levels would soar, my optimism and sense of humor would plummet, and my resolve to radically change my eating, exercising and work life habits would go from boiling on the front burner to simmering on the back burner. This could all dramatically weaken my immune system's ability to fend off a cancer recurrence, long-term.

If I believe that healing ultimately stems more (not totally, but more) from the inside (my own mind/spirit/attitude/natural defenses) than from the outside (chemo, radiation, etc.) then I have to consider my choices very carefully. I have to weigh many factors. It's not black or white, and it's about more, much more, than just "what medicine will the doctor give me that will make me well?" or what the studies "prove" (because studies are not done on EVERYTHING that might conceivably be a cancer-healer. Studies are selective. If a study is done on the results of chemo treatment for cancer, but no studies are done on the results of a
"laughing and loving every day" treatment for cancer, then nobody knows the statistical benefit of laughing and loving. So, because nobody can measure love and laughter, these healing treatments are not considered to have been proven. Ditto for treatments such as, oh, how about the "healing through joyous dance and music" treatment? Or how about the "healing through living a life filled with meaningful work" treatment? Or how about the "healing through meditation and an apple a day" treatment? Or how about the "Essaic tea, tennis every morning, macrobiotic except for chocolate three times a week" treatment? The unproven-because-never-clinically-studied  treatments for cancer (or any other illness or disease) are as myriad as all the people who have ever recovered from an illness or disease even though they didn't do the standard recommended treatments. (What DID they do? Or not do? No one knows for sure. "All" we have are anecdotes, word of mouth (sometimes over the course of hundreds of years!), or studies that aren't considered "scientific" enough (by Western scientists) to be valid.

I could go on and on. And I will, but not until later. Right now I have to go out and buy snacks and flowers for the memoir class that starts tonight at the Writing Salon. I also have to put in another call to HealthNet, because they just sent me two more letters, insisting that they have not received "the requested information" and therefore will not pay for my two surgeries that cost $30,000. Total bullshit. If I had more time and money, I would indeed sue their asses off. Instead, I am going to keep trying to make headway with Dennis, my best contact at HealthNet (I'll call him again tomorrow, and I'll be nice to him).

For the rest of today, however, I'm going to focus on shopping for snacks and fresh flowers, and on staying unstressed. As they said to me at Block Medical Center, every time I get stressed out, the insulin in my body "spikes." Every one of these spikes is unhealthy, weakens my immune system, makes it harder for my body to withstand the cancer. I forget the exact scientific explanation. It isn't as simple as I'm making it. Was actually quite fascinating and convincing. The bottom line is, stress is truly, significantly an AID to my cancer. Cancer loves stress, just as it loves sugar.

I am therefore in the process of becoming a duck. Water is gonna roll off my back. I'm not going to let myself get soaked in anger, resentment, blame, fear, pessimism, anxiety, self-pity, etc. Nope. I'm gonna go to Good Life and buy snacks and flowers for a business that I created out of love, and that I now want to continue to lovingly tend. (I'm also going to buy some "seitan," god help me. One of those meat substitutes. Made of wheat gluten. Not my idea of a mouthwatering steak or a juicy pork chop. I do have to say, though, that I ordered some "seitan fingers" at a vegetarian restaurant called Blind Faith, in Evanston, IL, during our trip and, astonishingly, I liked 'em just fine. But how do I make my own seitan fingers? The uncooked wheat gluten looks like a big icky blob of rubber and comes in a box with no instructions on how to turn it into something edible for humans. Another challenge on the horizon.)

 

 

Walking on Bernal Hill

hilltop
Originally uploaded by fotogail.

Walk-a-Rama 2

Lenore walks down Mission Street immersed in the warm, heady smells of cooking from Mexico, Guatamala, and El Salvador. For twenty minutes she is married to the alchemy of cilantro and walking, tortillas and thinking, carnitas and meditating — wedded to the magical union of bargain rate tote bags and cell oxygenation.

She turns right  onto 23rd Street, walks a couple of blocks over to Folsom, and turns right onto Folsom. Folsom's steadily rising incline pulls her straining thighs up up and up until she reachs the top of Bernal Hill. In the six o'clock dusk, all the dog walkers appear as starkly faceless silhouettes, perfectly black paper cut-outs standing against the deep gray backdrop of San Francisco's twilight sky.

The ninety-five dollar bottle of mycelia mushroom extract sits in a bag on her faraway kitchen counter, alongside several other bottles filled with free radical fighters and immune builders. The 23-page medical questionnaire that she faxed to Chicago yesterday is, for the moment, only a faint memory. Sweat forms a light sheen down her spine

Walk-a-Rama

Yesterday I had to smile a big smile when I listened to a voice mail message from Dale, one of my longtime Round Robin students who apparently has been reading my blog of late: "Hello Jane," he began, "I know you're probably out walking to the Mayo Clinic and back, but when you get a chance, give me a call. For some reason your online registration page isn't . . "

Ah yes, walking. I'll try not to let you or anyone else down, Dale. The less I answer the Writing Salon phone, the more you can rest assured that I am out there tromping the streets of San Francisco, dog or no dog, rain or no rain, pedometer or no pedometer.

Other forms of exercise are on my agenda too. Probably Iyengar yoga. Maybe Curves. For starters. If those don't pan out, I'll try something else and will keep trying until I hit upon the right combo. I'll just run the Writing Salon from my cell phone. Maybe I'll have to get a palm pilot, god forbid. Can one use a palm pilot while pedaling on a stationery bike? I suspect this is the wrong approach if I am also trying to reduce stress and workload. I suppose I should be RELAXING as I walk, enjoying the scenery, doing kind of a walking meditation - not working. We'll see.

I'm just starting to warm up to this daily write, but my time is up. I have to get dressed and go for my dogless, pedometerless walk. But I do still want a dog and a pedometer. I wish border terriers didn't cost $1500 to $2000. Oh well. I'm now limiting my dog hunt to homeless mutts. Also need some cute exercise clothing. I can't go to these places in my jeans or flannel pajama pants. I need EXERCISE outfits. Loose and comfortable, right? But not too loose, because they want to see your posture and alignment and stuff, don't they? But not too tight, because that would be uncomfortable and impractical and everyone would be able to see my fat little belly bulging out to obstruct my view of my toes.

Our Conveyer Belt Healthcare System

My friend Ms. K made a comment on my last post about communicating with doctors. I agree with her wholeheartedly, in that I know how hard it must be for doctors, too. Many of them (not all, but many) would probably love to be able to spend more time having true give and take discussions with their patients, of any sex — but they're trapped inside this crazy awful healthcare system of ours.

I've been looking at what HealthNet (my crapola insurance company) pays its contracted providers. When my surgeon billed me $2,000 for a surgery that took less than an hour, she ended up getting maybe $250. The woman isn't making a killing by any means, and I can see why she doesn't have the luxury of spending an hour and a half with every patient. Instead, she rushes in — harried and distracted by seven other pressing cases and a waiting room full of people who are annoyed because they've been waiting way too long —  and if you're lucky you get her for 15 minutes, even if you've just been diagnosed with breast cancer and are reeling and confused and have NO IDEA what your options are.

The system won't ever change, though, unless we communicate our dissatisfaction, loudly and clearly, to the point that our doctors feel so pressured they actually do start to work harder to come up solutions. Solutions ARE possible. It doesn't have to be like this!

Women, Doctors, & Decision-Making

Re the excerpt below, well, duh, OF COURSE. But I'm glad they're doing the research to back me up.

Communication with health care  providers may help women reduce uncertainty and improve both emotional and  cognitive well-being. To assess the influence of symptoms, uncertainty, and  communication with providers on well-being, data from 203 Caucasian and African American survivors, 5-9 years post [breast cancer] treatment, were tested using structural equation modeling. Symptoms, age, and uncertainty had the strongest  influence on well-being, regardless of race. There was an unexpected positive association between patient-provider communication and thoughts of recurrence. Descriptive analysis revealed that 52% of women were unable to achieve their desired decision-making role with health care providers. — Excerpted from Research in Nursing and Health

Women still have to fight hard to be heard in many places and on many fronts. This is especially true in the world of medicine, and particularly the world of breast cancer where, if you don't demand to be heard and to be told your full range of options, communication between you and your doctor will most likely be minimal and one-sided. The doctor speaks, you listen. The doctor tells you what to do, you do it. End of discussion. If you buck this antiquated, sexist system, you're perceived as a "difficult" patient. A troublemaker.  Possibly a bitch.

I say: "Women, hold your ground. Speak up. Don't let yourself be cowed or browbeaten into believing that you are not qualified to have a say, an opinion, or a list of questions. Insist on taking an active role in the decision-making process. You have every right, AND it will help you to feel better and heal faster."

Today's Broken Thread

In the last 24 hours, three people - a friend, a Writing Salon student, and a Writing Salon teacher - have gotten upset with me because I didn't do something I should have done, or because I did do something I shouldn't have done. In each case, my failure to do or not do whatever each person wanted me to do or not do, was a direct result of my "current state of affairs" — that is, of my ongoing breast cancer "journey."

What, exactly, is my current state of affairs? Well, it's been pretty good lately, all things considered. I have my wits about me again, and am managing to stay fairly calm and sane -- UNLESS someone gets upset with me. If someone gets upset with me, I feel very fragile, vulnerable, and emotional. If that someone becomes THREE someones in less than 24 hours, and if those three Someones get mixed in with: a broken fax machine; a 23-page medical questionnaire that I have to complete by tomorrow; an X-ray technician who won't fax my MRI because she can't find the authorization form that I already sent last Friday and who now wants me to re-fax it to her on my broken fax machine; a Southwest Airlines free plane ticket program for cancer patients that apparently just went belly up at exactly the time I need it; and 1500 Writing Salon flyers that I have to revise and then print by a 3 p.m deadline. . . . well, I LOSE IT. And I lose it Big Time, because I am holding it all together by a THREAD, a flimsy goassamer thread.

When I lose my cool, I tend to lose it verbally (gee what a surprise). I lash out quickly and hotly, without waiting to regain my self-control. I say things I wish I could take back.  I forget all about my "grace under pressure" vow. I can become sarcastic. Today I angrily told one of the three Someones that I was so very sorry, but I didn't have it in me to be the Martha Stewart of Recently Diagnosed Breast Cancer Patients.

Yep, I've blown it time and time again, with friends, clients and co-workers. I've been forgetful, thoughtless, and self-centered. I've been crabby, snappy, whiney, and cold. None of this makes me feel good about myself, to say the least.

At the same time, I think people need to understand that it feels really weird and isolating to be "diseased." In this blog I write about only a tiny portion of the changes and challenges I've encountered over the last five months. I'm treading a fine line between wanting to present a brave and inspirational face to the world — to be someone who sees her cup half full, and who creatively turns stones to soup, etc. etc. blah blah blah — and wanting to scream bloody murder AND tell off anyone who dares to get upset with me right now.  As in: "Gimme a f....k'in break, will ya? Wait until my life gets back to normal, and then if you wanna get upset with me, fine. Go for it."

I figure (hope) that by the end of this month, after having had six months to absorb, digest and confront the realities of dealing with this disease, my life will go back to normal. Not the Old Normal, but a New Normal. If I have my treatment protocol in place by February, and if I know basically how much out-of-pocket money those treatments are going to cost me from here on out, then I can methodically and neatly (yeah right) incorporate all of that into my life, and move out of what I am calling my "chaotic transition stage," and into the next stage of "just living with it," and hoping that "it" will recede slowly but surely into the background, never to recur.

 

More Movement Toward More Movement

During my last consultation with Dr. Mark Renneker, he stressed to me that, of all the things I've been doing to try and build my immune system (i.e. diet changes, vitamins and other supplements, stress/workload reduction, more exercise, acupuncture, Chinese medicine, and doing this blog [good for the spirit/emotions, to not keep all this stuff bottled up, to try and turn it into something creative, and to feel support from readers via their comments!]), exercise should be my number one priority. I told him I'd been trying and had made "some" improvements (yesterday Jack and I walked 3 miles on San Bruno Mountain's Summit Trail) but still had a way to go.

His response: Try harder. Do it faster. Don't fuck around. Get it together NOW. I have no idea where or how to begin. I've always hated exercising. Maybe I'll try Curves over on Church Street. Or Pilates at Castro and 25th. I don't know yet. But I do know that walking 3 miles once a month, or even once week, won't cut it.

So. I have no more time right now to write in this blog, because I have to WALK to my 8:30 a.m. acupuncture appointment in Noe Valley. Which means I have twelve minutes to shower, dress, eat something, and get myself out the door. Bye now.

Interpreting the Visitor

Shadows of trees played over her dusty windows. Ordinary time had become a short street. The cancer was speaking to Lenore in a foreign and brilliantly incomprehensible tongue, while making gestures that she interpreted as great roaring rivers and lost canyons. The idiosyncratic, whirlygigging antics of this malignant visitor, with its deceptively benign face, prompted her to search the Internet for a dog to adopt, a dog that would go walking with her, wag his tail in vigorous anticipation, rest his head on her knee, and jump up onto the bed, ever ready and eager to accompany her into any dream or nightmare. When she began to think about demons in the ether, she stopped herself to imagine an adorable puppy, instead.

She couldn't help but notice how the cancer's eccentric nature was mimicking her own. Just outside the door or just under her skin loomed everything from despair to sudden joy. She began to think of warm days in May and June, the taste of cottage cheese mixed with almonds, raisins and flaxseed oil, tumor markers, leopard fur, whipped cream floating on top of hot cocoa, metastasis to the bone, and other possible poems.

Just Yell if There's a Problem!

"Can you hear me Mrs. Underwood?"

"Ms. It's Ms. Underwood."

"Mrs. Underwood, can you hear me?"

"Yes."

"Good. Just yell if there's any problem. This next segment will be four minutes long."

"Okay."

MRIs are noisy machines. You have to wear ear plugs when you're inside them, which makes it harder to hear the technician who is speaking to you through an intercom. Apparently, the technicians have a hard time hearing you too, even without earplugs.

The noises the machine makes are varied, ranging from clicks and clacks to jack hammer'ish pounding. I had two MRIs this week at UCSF on Parnassus, one on Tuesday and one yesterday, Thursday. One for each breast. For some reason, they have to do each breast separately, at least two days apart. You lie on your stomach, and insert your breasts into two holes in the table. Nifty, huh? Then you choose which way you want to turn your head, they position your arms just so, and pull a strap around them so that you don't move at all. Then they roll you into that big round machine. Claustrophobics beware.

Wednesday I had a bone density scan at CPMC way out on California, after which I drove to St. Mary's Hospital to pick up the results of my tumor marker blood test (CA 15.3 and CA 27.29) that I had done last Friday.

When I got home from the second MRI yesterday at 5:30 p.m., I wolfed down a tuna sandwich while checking phone and email messages, made my cup of Chinese medicinal herb tea, then gathered together my research notes and questions for my 7 p.m. phone consultation with Mark Renneker. Jack and my friend Kerry were also in on the consultation call. Better to have three sets of ears for cancer consultations, I always say.

It was a good consultation. I read Mark the results of the tumor marker tests, and he was relieved and pleased. They're within a normal range right now. That's a good sign. My bones are nice and strong, too. Another good sign. Hopefully the MRI results will also be good. All the test results will affect the treatment decisions that will be made, I hope, within the next month or so.

"Mrs. Underwood? Can you hear me?"

"Yes, just barely."

"This next segment will be just under five minutes. This is the one where we'll inject the intravenous dye. It should feel slightly cool if you feel anything at all. If it burns or hurts as it goes into your arm, let us know. Be sure to yell out; otherwise we won't be able to hear you. Stay still, now. Don't move."

"Okay."

Clack clack clack. Rumble. Clickclickclickclickclick. Boom boom boom boom boom boom....

"That's it, Mrs. Underwood. All done. We'll remove that IV line, and you're free to go."

I had no tests today. Next week I have an appointment with Efrem at Chinese Medicine Works at 8:30 a.m on Monday, and one on Tuesday at 11:30 a.m. with Dr. Cowan, and one on Wednesday with Dr. Rosenberg at 2:30 p.m. On Thursday I have another phone consultation with Mark Renneker at 6 p.m. Three days after that, if the scheduling works out optimally, Jack and I will board a plane and fly to Chicago for an appointment with Dr. Block.

Time for dinner. I've been a very very good vegetables-fruits-and-fish girl for weeks on end, so tonight I'm having steak, and will savor every bite.

Symptoms

Whenever there was but a little left of the day, Lenore ate handfuls of almonds and raisins. Munching her way toward sleep, she had a sense that, for one reason or another, she had to take her visits to the doctors and the hospitals as friendly reminders — not of her mortality but of her need to clear up the clogged pipes and recognize what was before her eyes, so that what was hidden would be revealed. Symptoms, symptoms, symptoms. So many symptoms arose in life. So many attempts at diagnoses then had to follow.

In the silence of encroaching midnight, she wondered, was it a myth she sought to uncover, or a structural diagram? She tried to imagine a medical approach more in tune with art, a world where disease was suggestive of poetry. Was her soul in her spleen? She needed to buy Indo-3 Carbinol. Gamma E tocopherol/tocotrienol. Gamma linolenic acid. CoQ10. But she wanted a few tastes of heaven first — a hot fudge sundae, some raspberry-rhubarb cobbler with ice cream on top. No. Not allowed. Boo hoo. But swearing off sugar was the least of her "challenges."

The next MRI loomed closer, scheduled for 4 p.m. that afternoon. All she'd have to do would be to hold her body still, very still, and count the seconds for each five-minute segment. Forty-five minutes later, she'd be free to go back to nursing her wounded breast, rubbing small pools of castor oil into her fate, and massaging her heart with walks through the city, through the music, through the animals, vegetables and minerals dancing all around her.

The Flip Side of Yesterday: Today

Plumbing problems now under control. Overflow pipe replaced. New flex lines installed. Shower head repaired. And a bargain-rate (cheapskate) plan in place for replacing the ancient faucets.

Dennis at HealthNet never called me back yesterday, but it was late afternoon when I left the message. I'm giving myself a private mini-course on how to interact effectively with healthcare insurance employees. Lesson #1: Get your stuff organized before calling. Be ready to put your hands on necessary papers (explanations of benefits, claim refusal letters, etc.). Keep a running record of which insurance employee you last talked to, and when. Stay calm and be gracious. Don't raise your voice or interrupt. Exercise patience, restraint. Wait your turn. Understand that they are just regular people trying to do their jobs. If they aren't doing a good job, ask to speak to a supervisor, but be prepared to deal with roadblocks as you try to get to that supervisor. Supervisors are hard to get to, and even when you do finally get one on the line, they often turn out to be young'uns who know very little more than the peons. You have to be kind to them, and patient. You must be okay with repeating yourself seventeen thousand times. It's the only way.

I also figured out the maddening scanner problem that I was having yesterday, at a time when I was under the gun, trying to meet a deadline (more patience required). Finally, at around 8:30 p.m., I was able to email my son a bunch of his baby and toddler photos, in time for his circus troupe's video technician to incorporate them into their upcoming new show, a task he had to complete this morning. I worked on the scanner project all day, inbetween plumbers and HealthNet and green tea/Chinese herbs or fresh carrot juice breaks.

My son is The Bomb. He's heading off for Marseilles later this month, where he and the rest of his circus troupe members will begin a year-long tour of Europe, New Zealand, Japan and I forget where else. They'll also be performing in the closing act of the Winter Olympics in Italy. He'll be on TV! He's 22 years old and already supporting himself doing what he loves to do. Wow. When I count my blessings, he is at the very very top of my list.

Today I also plan to take a shower. Yay! My last one was Saturday morning. Then I'll pick a couple of things from one of my gargantuan to-do lists, and try to do them. Then I'm off to my first-ever MRI appointment at UCSF Medical Center. After that, if I have any energy left, I might try to drop by Overland Books on Judah Street to talk with Beau, the owner, about the Writing Salon readings that I'm trying to set up there for the coming year. How does "Memoirs in the Making" sound for the first reading theme?

I'm also plugging away at this "what's my treatment plan going to be?" question. The first thing I did when I woke up was pore over the website of an anthroposophical doctor who recently moved to San Francisco from back East, and now has an office in the Haight. It appealed to me (on a gut level) more than I thought it would, and more than Dr. Keith Block's Chicago Clinic does.

It's slow going, trying to choose the doctor whose hands you are going to put yourself in for the foreseeable future. Most women spend a lot more time choosing which hair salon they want to go to than choosing their primary care doctor. In fact, most people spend more time choosing all SORTS of things than they do choosing doctors. And if they have a serious illness such as cancer, they often spend even less time picking a doctor than they would if they weren't seriously ill, because they're feeling afraid and pressured to hurry up and get going on treatments.

More patience required. Patience and faith that I am on the right path. That I will find my way if I just stay in touch with my deepest instincts, listen to my gut feelings, and make choices based not on fear but on the best mix of mind/emotion/spirit and body wisdom that I can muster.

Grace Under Pressure

My bathroom plumbing fell apart nine days ago. Plumbers have been tromping in and out of my home ever since. Bathroom floor ruined. Can't walk on it without shoes. Today they finally "finished" with only the absolute bare necessities, because my landlord was too cheap to pay for the necessary new tub faucets. The burst pipes are no longer spewing a flood out, but I barely have enough water pressure to take a shower. I stand under a trickle. A dribble. The landlord will agree only to hiring the cheapest non-licensed handyman on earth, if I want new faucets to replace the ones that are probably a hundred years old.

In addition: HealthNet is screwing with me again. It has been four and a half months since my breast cancer diagnosis, and although they finally paid some of the smaller bills (I have about 50, totalling over $50,000), they are still dragging their feet about paying many of The Big Ones. Most of the bills have been "put through for re-processing" three times already. Each time, HealthNet refuses to pay the claim, I call and ask why, they make me jump through all the same hoops over and over again, and then they tell me I'm right, that the claims should have been processed already. Each time this happens, they tell me it will take at least 30 days for the re-processing to go through.

Two days ago I started getting letters from them again, saying they had not received "the requested information" and were therefore closing my claims (not paying) and that if I wanted to appeal, I should "read the instructions on the back of this form."

What requested information? The requested information that they've already asked for, and  been given, three times over??????? I'm now starting to receive overdue notices from the doctors. Fifteen more days, they say in big red letters, is all I've got before they turn the bill over to the collection agency.

Meanwhile, I'm still trying to come up with my breast cancer treatment protocol. Still trying to find the right combination of conventional and alternative doctors. Still waiting for test results and still trying to squeeze in even more appointments for more tests - MRIs, bone density scans, tumor marker tests, etc.,- while attempting to run my business, and while attempting to not be stressed and to remember to eat right and to take all my supplements and exercise every day and above all NOT PANIC. I must not panic about not yet having started any supervised, heavy duty breast cancer treatments. Don't panic, don't panic, don't panic I keep saying to myself over and over. You'll get it together, Jane. Just keep plugging away.

But my life is grueling right now. If only I could shut everything down except for working on the medical stuff. If I had a month to do nothing but that, maybe I could get it all figured out, settle on a treatment plan, find the doctor who would be my ally and guide. But that's not my reality. I need water in the bathroom, and I have to earn a living, and that leaves very little time for anything else.

So. . . in lieu of focusing on nothing but medical stuff,  I find myself snapping at Jack, screaming at the landlord, screaming at the plumbers, being impatient with anyone who calls or emails to ask about Writing Salon classes or anything else to do with the Writing Salon, forgetting  to return phone calls or emails from my friends, barely staying in touch with my wonderful son, letting my house turn into a pig sty, not getting dressed half the time, and continually adding stuff to my infinitely long "To-Do" lists. There are three different To-Do lists concurrently running side by side by side: Personal To-Do Short-Term. Personal To-Do Long-Term. Business To-Do Short-Term. Business To-Do Long-Term. Medical To-Do Short-Term.  Medical To-Do Long-Term. Each of those categories is broken down into subcategories. I can't even get one-tenth of each day's short-term list done. I barely look at the long-term lists. On every day's short-term list, I add "See yesterday's list" to the bottom.

I'm now waiting for a return call from Dennis, one of the HealthNet supervisors who, back on Dec. 8th, told me that "everything is being put through for re-processing." Good old Dennis.

I made myself a little sign a few minutes ago when I was feeling apoplectic. It is now propped up against the potted plant on the table where I work. It says:

GRACE UNDER PRESSURE. Stay calm. No stress allowed. Be nice. Everybody struggles. Be compassionate. Savor every moment. You have many blessings. Count them. Take your vitamins and supplements. Get a dog. Walk every day. Let laughter in. Be strong(er). You can figure it out. You can do it. You are, after all, still alive.

A Small Sunday Meditation

"There may be a plan, but we will never be able to stand back far enough
to appreciate it (fully). Somewhere life may make sense to a great
cosmic someone, but not to us here; not to us, splintered in a struggle
to do what is right in a world that presents us with complex, competing
options. We may never see the larger picture, creation's perfected
whole; we may be forever flickering fragments, fractured by the raw
reality of immediacy from which there is no escape while we are alive…
Well then, let us dance in the flame that we see. Let the arc of our
creativity embrace our moments of time, and let us add our light to the
kaleidoscope. . ." — Rev. Elizabeth Tarbox

Treating the Host

Another inch or two of the plot floats up as I sip my spicey yogi tea spiked with mysterious Chinese herbs. Porius fungus (fu ling). Artemesia capillaris (yin chen hao). Unripe aurantium fruit (zhi shi). Akebia stem (mu tong). Scutellaria root (huang qin). Phellodendron bark (huang bai). And more, many more, all ending with a lone gardenia bud (zhi zi).

As I survive this complicated something that has been inadequately labeled "a disease called Cancer," my dishwasher whirs. It's 9:55 p.m on Wednesday night, I'm waiting for my pharmacological dose of melatonin to kick in and help me sleep. Studies show that women with breast cancer often have very low melatonin levels.

The last few days have been big juicing days. Yes, I bought a low-end Jack LaLanne juicer at Costco. Hadn't planned on it but am glad I let myself be carried away by this persistent desire to survive/live/flourish.

And no, juicing isn't all I'm doing. Neither is melatonin or acupuncture or Chinese herbs (in case you're wondering or worrying that I've gone off the deep end of delusion). I've also been busy having a battery of baseline tests done – tests to measure the nutrient levels in my body, my adrenal function, my hormone levels, my iodine levels, and my liver function. Blood tests, saliva tests, urine tests. Next week: an MRI, a bone scan, and a tumor marker test. Gotta get those baselines in order to know how to proceed. (Why, you may ask, did I not have all these tests done early on, right after I was first diagnosed? Good question. Answer: None of my doctors told me to. Not the breast surgeon, not the oncologists. Nada. Maybe they figured I'd blindly do as they said, and dive directly (DO NOT PASS GO, DO NOT COLLECT $200) into chemo, then radiation, then Tamoxifen, and THEN have some tests done later? I don't know. I think it sucks that I had to wait until I found Mark Renneker, in order to be given guidance and suggestions re: my test options - and the reasons behind each test.)

I've also had two more consultations with Mark Renneker, who thinks that the oncologist for me, if I choose to see an oncologist again, might be located in Chicago. His name is Keith Block. I already knew of him because he wrote one of the chapters (the one on micronutrients) in the book I like so much: Breast Cancer Beyond Convention. As it turns out, he and Mark are old friends.

He's one of the few oncologists in the United States who practices integrative medicine and who knows all about nutrition (and other stuff like qi gong and exercise and immunotherapies), as well as chemo and radiation, in relation to cancer. Unlike pretty much every oncologist in the Bay Area (I'm not exaggerating; Mark agrees with me), he's committed to assessing/analyzing each of his patients on a detailed individual basis. In other words, every woman with a breast cancer diagnosis that falls into the same "stage" does not automatically get the standard " one size fits all" treatment for that stage.

As my acupuncturist and Chinese medicine practitioner, Efrem Korngold, says, (I'm paraphrasing him here), treating cancer isn't about killing the evil malignant cells, it's about modifying the "host" environment so that it is no longer friendly to those cells. My body is the host. We have to figure out how to strengthen the host (me) so that my "environment" will make it impossible for the cancer to survive.

Dr. Block, so I am being told, is one of those rare Western medical doctors who understands, values and is practicing this admittedly complex "integrative" approach. My kinda guy, except for the fact that he doesn't take any kind of health insurance. Even so, I've got a call in to his Chicago clinic. If he's the right doc for me, I'll find a way to work with him.

That's all the update I can muster for now.

Stay Calm, Persevere!

After spending a bijillion hours researching alternatives and/or adjuncts to conventional "cookie cutter" cancer treatments, I can tell you that the information overload can be wildly confusing and overwhelming. However, I believe it's worth it to stay calm, persevere and educate yourself. Certain Internet sites are the gems. Here's one of the gems: CanHelp,Inc.

Even if you don't have cancer, it's fascinating to read about The World of Cancer, especially the world of people who have chosen to eschew or partially eschew the standard, conventional treatments that do so much harm, in the process of attempting to heal.

Favorite Quote for Today

"The truth will set you free. But first, it will piss you off." --Gloria Steinem