My Great Breast Cancer Adventure

A Cellular Soup

Neuropeptides? Bombesin? "Oat cell" carcinomas? This is what I've been reading about lately. Huh? But yeah, it's a cellular soup I'm stirring these days, every bit as much as the lentil-kale and chicken-vegetable. We're talking epigenetics and bioenergetics. Bottom line, it all has to do with self-healing. I'm not saying that I've gone looney tunes and imagine I can "cure" my breast cancer if only I "believe" hard enough that I can think or meditate it away. But I suspect that someday down the line, if the human race doesn't exterminate itself before then, people will indeed be able to approach healing via energy manipulations and deeper understandings of how our minds are contained not merely within our brains but within our whole bodies. I think that what we know about how our cells function is minimal. Exceedingly minimal.

So I'm reading up on some of the stuff written by mavericks in the field of science and medicine: 1) Molecules of Emotion: The Science Behind Mind-Body Medicine, 2) The Biology of Belief: Unleashing the Power of Consciousness, Matter & Miracles, and 3) Entangled Minds: Extrasensory Experiences in a Quantum Reality. I've always loved mavericks, whatever "field" they may exist in.

If I have to die of cancer someday, I'd rather go out fighting (for lack of a better word) on a metaphysical rather than a chemo-toxic level. I'd rather be in the midst of taking my kindergartner baby steps toward an understanding of, say, the "biochemicals of emotion," as opposed to sitting in some dreary, scary, heart-withering hospital chemo room watching poison being poured into my veins. I need to find my own brand of healing, and it will have to include a "mystical" component. This doesn't mean I won't continue to take my pills, herbs, acupuncture and periodic trips to the giant tubular groaning MRI machine, it just means I'd rather watch poetry than poison being poured into my veins. Will this make me one or two iotas more enlightened than I was "before?" Will it make dying any easier when the time comes? One can only hope.

New Dining Room Table Gets Broken In

Rosie's organic chicken, beer, wine, crispy nuts & other munchies, roasted red yukon gold and new red potatoes, lush green salad with feta, bread & butter, vanilla ice cream and/or creme fraiche with blueberries, a little candlelight, a little background music and...best of all, conversation, conversation, conversation...politics, health,  mystery novels set in the 1500s.  We never got to hear about Bev's latest lotus flower photos, though. Nor did we make it to the live music session (Doug's guitar, Jim's snare drum). All the more reason not to wait a whole year before doing it again. I think it'll be easier now that we've got the table to inspire us. Once a month would be more like it. For more photo documentation courtesty of the The Great Plotnik, click here.

Life in the Fast Lane

I just received this email from one of my most favorite people, Ms. Mush, whose blog (no more commas period), is one that I read religiously:

Why aren't you writing in your blog? I miss hearing about your son, jackie pie, livvy b., vitamins, limes, girl movies, walks, etc. msmush needs a post

Thank you, Ms. Mush, for making me feel that someone misses me when I've gone AWOL!

So I shall rally. But how? Let's see. It's Sunday evening, 8:25 p.m., and as usual I am sitting on the living room couch with my laptop on my lap (working on the Writing Salon summer session website), Olivia Bouchet snoozing beside me (yes, she's taking up more than half the couch), my son cavorting in Korea (Seoul) unless his performance itinerary was changed and he didn't tell me, and Jackie Pie making all sorts of godawful noises rattling paint cans, scaffolding, ladders and buckets after a day of painting more colorful shingles on the back of the house.

I spent my pre-Memorial Day Sunday alternating between domestic and non-domestic chores. Wahoo! I made crispy nuts, washed dishes, brought three more boxes of stuff from the Moultrie house to this house, sorted jewelry that I rarely wear, went to the grocery store for soap, walnuts, pears and a fourth item that I've forgotten. Oh yeah, that would be the inositol hexaniacinate. It's a supplement that I take to help facilitate the absorption of the Iodoral (iodine) that is one of the main alternative "treatments" that I do to make my bodily terrain inhospitable to breast cancer.

Inositol hexaniacinate is the long word for a certain form of niacin. There are three other supplements that also help facilitate the absorption of iodine: magnesium, selenium and Vitamin C. I take 'em all.

I've talked about the importance of iodine here before, but if you missed it and want to be healthier (breast cancer or no, but especially if you have bc or want to prevent it, read this. And this).

I  also enjoyed my new view from the couch — of the huge (seats 10 with the leaf) rectangle dining room table that we bought on Friday via my favorite store of all time: Craig's List. I was so happy about the table (which replaced the folding table with black metal legs and formica-over-particle board top) - you know the one. They use them at street fairs, or at PTA events in the school auditorium, or for holding brochures at boring conference exhibit booths. We had dragged it up out of the garage.

The nice new table inspired us to visit the Bernal farmer's market (at Allemany) yesterday morning to get fresh flowers for the living room, dining room and kitchen. Freesia, daffodils, iris and a couple others I don't know the names of. Wish I'd remembered to ask. Writers are supposed to ask the names of everything everything everything, so that we can be specific specific specific. I forgot. But don't get me going on the topic of forgetfulness or, to be more SPECIFIC, short-term memory loss; I wear it all the time now. It's my new black.

Now it's 9 p.m., time for me to leave this blog in order to finish Part Two of making Batch Two of the crispy nuts (I messed up the first batch yesterday...soaked that at too high a temperature, oy). First you soak them in salt water (Celtic sea salt, filtered water) for at least seven hours at a warm but NOT hot temperature. That's where I went wrong... Then you drain them, spread them out on a cookie sheet, and dry them at a very very low temperature for around twelve hours (low as in: put them in the gas oven near the pilot light but don't actually turn the oven on. Or put them in the oven and turn it on low, but leave the door open all the way, not just a crack). I mean, your oven may be different from mine. We must all get to know the idiocyncracies of our own stoves, n'est-ce pas?

Crispy Nuts Lesson:

Nuts are an extremely nutritious food if properly prepared. Once again, the habits of traditional peoples should serve as a guide. They understood instinctively that nuts are best soaked or partially sprouted before eaten. This is because nuts contain numerous enzyme inhibitors that can put a real strain on the digestive mechanism if consumed in excess. Nuts are easeir to digest, and their nutrients more readily available, if they are first soaked in salt water overnight, then dried in a warm oven (you may also use a dehydrator). This method imitates the Aztec practice of soaking pumpkin or squash seeds in brine and then letting them dry in the sun before eating them whole or grinding them into meal. Salt in soaking water activates enzymes that neutralize enzyme inhibitors. An excellent snack is crispy nuts with raw cheese (me: RAW, not pasteurized). — excerpted from Nourishing Traditions, by Sally Fallon

Are you riveted yet by my fast-lane life, Ms. Mush? I was going to say one last thing but now I can't remember what. Oh, I know what I'll do instead. I'll post a pic of Ms. Mush, the one she sent to show me that she honored a request of mine, made just prior to her trip to Italy. I asked her to be sure and let her long hair flow free...and to allow her usually-hidden camisoles to show. And so, in Florence, she did.

 

 

Avon Walk for Breast Cancer

I'd like to devote today's post to my friend Loren Rhoads — a writer (amongst many other things, such as wife and mother) and also the former publisher of the magazine Morbid Curiosity (which she recently laid to rest after a highly successful ten-year run).

Last year Loren participated for the first time in the Avon Walk for breast cancer. It was a huge undertaking for her, one that required many hours and miles of training — often while pushing the baby stroller. But she met her fundraising goal, completed the walk, and is now embarking on Walk #2.

Here's a recent entry from her blog that will tell you more, i.e. about how to help her meet her goal of raising $1,800 (she's halfway there right now). Needless to say, I and many other women are deeply appreciative of Loren's generous contribution. And when I say contribution, I'm not just talking about time and money. I'm talking about the spirit of giving that underlies the actions. That spirit is a medicine and a powerful force for healing, moreso than any pill or potion.

Did You Know?

When I was diagnosed with breast cancer in August of 2005, the doctors immediately put me on the conveyor belt that would carry me, in no time flat, through the standard treatment routine. First, stop hormone replacement therapy. Second, have surgery to remove the lump. Third, remove a few lymph nodes. Fourth, do eight weeks of dose dense chemo (twelve weeks if not dose dense). Fifth, several weeks worth of radiation. Sixth, take an estrogen blocker such as tamoxifen or Arimidex for the next five years.

I allowed myself to be whisked along through steps one, two and three. And I came very, very close to going through with step four. I met with three oncologists, picked the one who offended me the least, did some pre-chemo acupuncture, and went to the chest x-ray appointment that I had to have prior to the operation to insert a "porta-cath" contraption next to my heart (a way to have the chemo drugs delivered without having all the painful intravenous needles in the arm, etc.)

The date for the porta-cath operation was set for three days prior to the first round of chemo. One thing I remember from this blur of frightening (terrifying, actually) preparations was my fear of living with non-stop nausea for eight to twelve weeks. How would I run my business? I couldn't afford to just stop working. Besides, chemo sounded as if it would be miserable enough even without any nausea. Infections right and left, weakness, exhaution, bloating, weight gain, baldness, sores on your skin, sores in your mouth, constipation, diarrhea, memory loss (chemo brain), depression . . .  Well, the oncologist assured me that I had very little to fear in that department, because "anti-nausea" drugs would be pumped into me right along with the chemo. He told me that the dangers of these anti-nausea drugs were negligible.

I was also scared of infections that could result from having my immune system wiped out. I was especially scared of ending up, after any given round of chemo, with such a bad case of anemia that they'd have to postpone the next round of chemo, thus extending the whole process even more. But again I was told that there were now these wonderful new drugs that I could take along with the chemo that would help to keep my blood cell counts up enough that it would be unlikely that we'd ever have to postpone chemo. The nifty drug I'd be given, I was told, was called Procrit.

Procrit, Epogen and Aranesp - known collectively as epoetins or ESAs (erythropoiesis stimulating agents) - are among the world's best-selling drugs, with combined sales of $10 billion last year. In the US, they constitute the single biggest drug expense for Medicare and are given to about a million patients each year to treat the anemia that is caused by cancer chemotherapy or by kidney disease. Two of the world's largest drug companies, Amgen and Johnson & Johnson, have been paying hundreds of millions of dollars in incentive bonuses to doctors - including medical oncologists - who prescribe the anti-anemia drugs.       

Procrit and Aranesp can be very effective in correcting the severe anemia that often accompanies cancer. Epogen is widely used in the treatment of patients with renal (kidney) failure, another situation in which anemia is extremely common. . . . However, there is an emerging downside to the use of these drugs.    

An increasing number of researchers have become concerned that the drugs may increase a patient's risk of heart attack and strokes. Furthermore, they do not improve the outcome of cancer treatment. In fact, there is growing evidence that they may actually shorten, rather than lengthen, survival....

Click here for the rest of this report, taken from the Ralph Moss newsletter, Cancer Decisions. (You'll have to scroll all the way down to the bottom.)

I changed my mind about doing chemo a few days before I was scheduled to start it. And I'll tell you this. If my breast cancer recurs or metasticizes, and if I ever get to the point where I have to consider chemo again, I'm going to: 1) Get low dose, fractionated chemo if at all possible (not dose dense!), and 2)  do everything I can to fight the side effects via ALTERNATIVE means, such as acupuncture, natural herbs, supplements, and anything else I can come up with that doesn't reek of greed, corruption and misinformation.

I realize this may sound extreme, but now, after almost two years of immersing myself in research, my disillusionment with the American healthcare system runs so deep, and my trust in it has disintegrated so much, that I question everything. It's exhausting but necessary...and, despite the exhaustion, empowering.

I know. What a way to start a Sunday morning...writing this downer of a post. But this blog isn't just for talking about my son, my boyfriend, my dog, my shoes and my hair color. It's also my attempt to help other women who have breast cancer. We have to help each other, and we have to learn how to help ourselves.

Also, I've done other things this morning besides writing a downer post. While eating breakfast I started to watch Arnold Schwarzenegger in Kindergarten Cop, and I give this movie, made in 1990, two thumbs up.  It's cute and funny, and I don't care if you think I'm ninny for liking it. So there. 

Boredom Be Gone!

I've been thinking about creativity a lot lately. Innovation. Pushing the envelope. Escaping the tyranny of habit. Replacing boredom with excitement. So I figured I'd preface bedtime by looking for a few good quotes about creativity. I want them to nestle inside my sleeping brain and inspire me:

Sometimes you've got to let everything go - purge yourself. If you are unhappy with anything . . . whatever is bringing you down, get rid of it. Because you'll find that when you're free, your true creativity, your true self comes out. — Tina Turner

The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift. — Albert Einstein

Creativity is a type of learning process where the teacher and pupil are located in the same individual. — Arthur Koestler

When I am working on a problem I never think about beauty. I only think about how to solve the problem. But when I have finished, if the solution is not beautiful, I know it is wrong. —Buckminster Fuller

Creativity requires the courage to let go of certainties. —Erich Fromm

Happiness is not in the mere possession of money; it lies in the joy of achievement, in the thrill of creative effort. —Franklin D. Roosevelt

Life is "trying things to see if they work." — Ray Bradbury

And let's end, for now, with this one:

“One way to compensate for a tiny brain is to pretend to be dead” —Scott Adams (cartoonist, Dilbert...)

 

The Day After Mother's Day

My spirits lifted yesterday after Will called from a fiery skied, huge-mooned Frankfurt to wish me a happy Mother's Day. I wasn't home when he called, but it was enough to get his "Love you, Mom."

He has a new laptop now, and our communications are improving as a result. Today he sent a few photos, and he's urging me to go get a web cam set-up so we can actually look at each other as we talk. Why haven't I run out and done that yet? Technophobia, mostly. But I must overcome that fear and move this task up to the top of my to-do list.

Nothing Doing But Brewing and Stewing

You know the mood: Lethargic, too much procrastination, inefficiency at getting much of anything done, uncertain which direction to go....

Well, that's been my mood for days and days now. Maybe weeks. I don't think it's a bad thing, exactly. I think it's an indication that I'm grappling with having to make some big decisions, and deep down I know I can't make them solely on the basis of intellect or logic, so I'm allowing myself to float along, suspended and in limbo, while my unconscious mind helps me sort things out.

This is hard for me to do. It requires patience and a willingness to just BE, even though I feel big pressures to hurry, to do what I always do, to sucuumb to habit and routine and all my usual, predictable methods of problem solving. The problem is, my usual methods are restrictive, limited, repetitive, and too tightly contained within the standard-sized envelope.

My theory here is that my creative unconscious needs more room to move, breathe and explore new options. Thus my conscious mind needs to step aside for a while.

Therefore:  I've been reading lots of "unnecessary" but fascinating books, when normally I'd be working on figuring out the Writing Salon summer schedule of classes (but I'm bored with this job, after eight years of doing it, and am looking at this boredom and asking myself what I can do to alleviate it...i.e. close down the Writing Salon? or if not the whole WS, then the Berkeley site? Or radically change the curriculum? Or...??? Big questions, not simple for me to answer.).

I've also been unpacking boxes that have been sitting in the spare room at Jack's, boxes that are filled with dumb ass objects such as old eyebrow pencils, broken earrings, lint removers that don't work, small empty drawstring bags, unpaired socks, needle packets, and old, round-framed "John Lennon" style eyeglasses, with old prescriptions, from twenty (or more?) years ago.

Another example: Friday afternoon, I took Olivia for an hour-long walk around Bernal, not something I tend to do when in the midst of a work-crunch time, which is what this OUGHT to be right now. If I weren't in this limbo state, I would've whisked Livvy B. around a couple of blocks, it would've taken maybe 15 or 20 minutes, and then I would have raced back to my desk to continue laboring over the class scheduling. Instead, after a leisurely hour-long amble, I returned home and didn't race back to my desk. Nope. I cleaned up the kitchen. Then I read some more and watched a movie on TV. Or something. I can't really remember what I did. I only know that it wasn't my usual "buckle down and do it even though I am sick of doing it and don't want to do it anymore, ever again."

There's a fine line, though, between productive unconscious problem-solving and unproductive impracticality. And baby, I'm treadin' it!

A Little Poetic Algebra

Your beliefs become your thoughts
Your thoughts become your words
Your words become your actions
Your actions become your habits
Your habits become your values
Your values become your destiny

Remember the simple algebraic equation: If a ='s b and b ='s c, then a ='s c?

In other words, your beliefs become your destiny. Literally.

I found this quote in the book I'm currently reading (The Biology of Belief: Unleashing the Power of Unconscious, Matter and Miracles, by Bruce H. Lipton):

I suspect that if I'd read the quote before reading the book, I'd have deemed it boringly abstract, woo-woo, New-Agey crap. Maybe something that would have come out of the mouths of those annoying people who are now marketing "The Secret" like crazy. I saw four of the "higher up" Secret gurus on Oprah, and I couldn't stand any of them.

But after reading only part of the book, I must admit that I am now more open to giving these words, despite their woo-woo-ness, some serious thought, as in... SERIOUS thought.

Let me give you a concrete example of what I mean by "literally," in relation to, oh, um, how about self-healing?

Here's an excerpt from the book:

A Baylor School of Medicine study, published in 2002 in the New England Journal of Medicine evaluated surgery for patients with severe, debilitating knee pain. The lead author of the study, Dr. Bruce Moseley, "knew" that knee surgery helped his patients: "All good surgeons know there is no placebo effect in surgery." But Moseley was trying to figure out which part of the surgery was giving his patients relief. The patients in the study were divided into three groups. Moseley shaved the damaged cartilage in the knee of one group. For another group, he flushed out the knee joint, removing material thought to be causing the inflammatory effect. Both of these constitute standard treatment for arthritic knees. The third group got "fake" surgery. The patient was sedated, Moseley made three standard incisions and then talked and acted just as he would have during a real surgery — he even splashed salt water to simulate the sound of the knee-washing procedure. After 40 minutes, Moseley sewed up the incisions as if he had done the surgery. All three groups were prescribed the same postoperative care, which included an exercise program.

The results were shocking. Yes, the groups who received surgery, as expected, improved. But the placebo group improved just as much as the other two groups! Despite the facrt that there are 650,000 surgeries yearly for arthritic knees, at a cost of about $5,000 each, the results were clear to Moseley: "My skill as a surgeon had no benefit on these patients. The entire benefit of surgery for osteoarthritis of the knee was the placebo effect." Television news programs graphically illustrated the stunning results. Footage showed members of the placebo group walking and playing basketball, in short doing things they reported they could not do before their "surgery." The placebo patients didn't find out for two years that they had gotten fake surgery. One member of the placebo group, Tim Perez, who had to walk with a cane before the surgery, is now able to play basketball with his grandchildren. He summed up the theme of this book when he told the Discovery Health channel: "In this world anything is possible when you put your mind to it. I know that your mind can work miracles."

The book goes on to talk about the "nocebo effect," or the power of negative beliefs.

"While many in the medical profession are aware of the placebo effect, few have considered its implications for self-healing. If positive thinking can. . . heal a damaged knee, consider what negative thinking can do in your life.

In medicine, the nocebo effext can be as powerful as the placebo effect, a fact you should keep in mind every time you step into a doctor's office. By their words and demeanor, physicians can convey hope-deflating messages to their patients. . . .

He goes on to relate a story about a man who was diagnosed with cancer of the esophagus which, at the time (1974), was considered 100 percent fatal. When he died a few weeks after his diagnosis, no one was suprised. The surprise came, however, after his death when an autopsy showed that he actually had very little cancer in his body, definitely not enough to have killed him. There were a couple of spots in the liver and one in the lung, but no trace of the esophageal cancer that everyone thought had killed him.

His Nashville physician, Clifton Meador, told the Discovery Health Channel, three decades later, that he was still haunted by Meador's death:

"I thought he had cancer. He thought he had cancer. Everybody around him thought he had cancer...did I remove hope in some way?"

Hmmm.

Oh, the quote came from the mouth of Mahatma Ghandi.

 

Jack Carroll Fine Painting

Dear Ms. K has just reminded me that it's boring to visit someone's blog if they hardly ever do any new posts (i.e. weekly rather than daily). I must plead guilty to this offense. Between worrying about the Writing Salon's low enrollments this session, watching too much TV, and cleaning out my closets at Jack's (I carted way too much unnecessary stuff over here, and there's no room for it, and I am now making myself sift, sort, and get rid of stuff right and left), I've had little time left to bloggidy blog blog blog. That's my list of excuses, anyway. As for the REAL reason, oh god, who knows? It's probably something much deeper and darker, but today is so stunningly sunny and warm, who can dwell on darkness?

How about this? Jack has been painting this house. It's an old house and a big job for one person, especially considering how he's doing it: shingle by shingle. Here's what happened. He asked me to help him decide what color(s) I wanted to paint the house. We sat down with four or five of those color "fan deck" thingies and pored over bijillions of color samples until I finally saw one particular set of colors, on one particular card, that leaped out at me. Jack liked them too.

I thought we'd have to pick two or three out of the eight colors on the card, but I couldn't decide which ones, and said to Jack, "I wish we could use all or most of them because I really like how they look all together." But I knew that was impossible.

Well, Jackie Pie surprised me a couple of days later when he said, "I know how I want to do this paint job. Instead of painting the house just one color, with different trim colors, I'm going to rotate six of the eight colors we picked, by painting the shingles different colors.

Plus we added three more colors for the trims, for a total of NINE different colors. I love the color palette, and I think Jack's idea is brilliant and unique. No other house in all of San Francisco has been painted this way, that's for sure. Will it work? It's very difficult to visualize what the overall effect will be. There's really no way to know except to make a bold leap into new territory and go for broke. Yowzers! (You can click on the photos to enlarge them.)

Things You Need to Know About Our Feet

News Flash #1: Olivia broke her toe and we can't take her thick, cast-like bandages off for six WEEKS, although we have to change them every three days. Now she hobbles around on three legs, can't play with other dogs, can't go for walks (at least not yet), and has to be carried down the stairs to the back yard. Thank god she can get back up the stairs by herself. Only 40 days to go!

News Flash #: I bought three pairs of NEW new shoes, as in: not used, not from the Salvation Army, which is where I usually get them. Pretty flats, but not too pretty to be comfortable. One red pair, one blue pair, and one coppery-gold pair. I was feeling despair about never wearing any shoes except for my fat, thick, heavy black walking shoes. Or my dog-nibbled dirty white sneakers. I had not one pair of springtime shoes that could be worn with either pants or a skirt. Not a ONE! The only shoes I had that didn't require socks were my sporty, ugly Tivo sandals. Jack is glad I got them because he doesn't have to listen anymore to me whining about not having any appropriate shoes.