Yesterday two dear friends responded to my post with comments saying that they didn't quite understand why I had titled it as I did. Here are their comments, followed by my response:
Two years ago (as those of you who've been following this blog already knonw), I was told that the best conventional, "standard of care" treatment for me, with my diagnosis of Stage II, ER and PR positive breast cancer, should and would include chemotherapy. I was scheduled for a fairly standard "cocktail" of three different chemo drugs, one of which was Andriamycin (one of the "anthracyclines").
After weeks of agonizing fear, research, and deliberation (my "research" included a visit to the Block Medical Center in Chicago, talking to several doctors, communicating with several alternative practitioners and/or women who had chosen alternative treatment paths -- a small minority, btw, who I found via an email discussion list, which I found via annieappleseed.org and breastcancerchoices.org (see my lefthand sidebar for links) -- and frantically reading whatever I could get my hands on, most of which I found to be quite confusing and difficult to decipher/understand given my lack of any scientific or medical training) . . . I finally came to the disconcerting conclusion that I didn't think chemotherapy would be a good idea at all. Its benefits for MOST women with breast cancer, as far as I could figure out, were extremely minimal. When I weighed those questionable benefits against all the negatives of chemo (very serious negatives that I felt would adversely affect how long I ultimately had to live, AND at the same time would make me miserably ill, to the point that my quality of life would have been dramatically changed for the worse, on every level - physical, emotional, and financial...I mean, how does one WORK to earn a living during all those weeks and months of chemo-induced misery?), I just couldn't accept the advice of the mainstream doctors. So I said no to chemo.
Today, TWO YEARS LATER, I read the latest article in Ralph Moss's newsletter. Here's how it begins:
ARE ANTHRACYCLINES ON THEIR WAY OUT?
One of North America's leading cancer researchers has delivered a major blow against a group of chemotherapy drugs that are widely used in the treatment of cancer. These drugs, known as anthracyclines, include epirubicin (Ellence, Pharmarubicin), idarubicin (Idamycin), and doxorubicin (Adriamycin).
Adriamycin is currently a mainstay of breast cancer chemotherapy. However, earlier this year, at a private forum held at the American Society of Clinical Oncology (ASCO) meeting, Dennis Slamon, MD, PhD, director of the Revlon/UCLA Women's Cancer Research Program of the University of California at Los Angeles, revealed that his research had shown anthracyclines to be effective only in a small minority of women with breast cancer. For perhaps 90 percent of women, these drugs have little or no benefit - and carry the risk of some potentially very serious adverse effects, including cardiac damage.
Slamon, whose research played a pivotal role in the development of the targeted anticancer drug Herceptin, presented dramatic new data on anthracyclines in mid-December 2007 at the San Antonio Breast Cancer Symposium. Speaking at the conference, he remarked that continued use of anthracyclines on a "one-size-fits-all approach is just crazy and it's medically dangerous."
Click here to read the rest of this article.
Does this mean that my conclusion was brilliant? Not really. Honestly, I am not a medical or science whiz. Far from it. But if you REALLY make a reasonable effort to understand how to interpret the statistics (which can be very misleading and easily misconstrued), it's not THAT hard to see what I saw. What's hard is to BELIEVE it, when the majority of doctors are insisting that you must shut your brain down and just do what they tell you to do. No questions asked, no other options discussed.
I could not --and still cannot-- accept that.
Okay, okay, I'll concede that, occasionally, I still allow the Christmas "spirit" to weasel its way into me for a MOMENT or two. Tonight it hit after I finished tidying up in preparation for a visit from Emerald and Blake, Jack's kids, who are coming for dinner (crab, bread, salad). After the tidying, I put out a plethora of tiny tea candles, which I'm about to light. Lighting candles always, always makes me happy, even on Christmas Eve.
And I've allowed myself a glass of white wine. And Jack did two things that I especially liked: 1) Replaced the dirty towels in the bathroom with clean ones, and CLEANED the bathroom (his idea, not mine...I was too focused on wine and candles), and 2) Put on a carousel of CDs that included, yes, Barbra's Christmas album which is significant, you see, because my dear friend the Great Plotnik wrote a song that she sings on this album. This particular song (It Must Have Been the Mistletoe) came on just as I was folding a clean blanket to put on the couch for Olivia, who was staring up at me with big hopeful liquid melted brown eyes, waiting to be told, "Okay! Come on up!"
So. I didn't shop for Christmas gifts for ANYone. But I do feel glad that Jack's two children will be here tonight, and even if my own child can't be here, at least I got to see him recently. And I do have all the Christmas memories of when he was little, and there was a tree and a pile of presents...and every light and star and sparkle and trimming imaginable. I mean, it's not like I've ALWAYS been an Ebenezer. At one time I even owned and wore a frilly red chiffony dress on Christmas Eve. And left a plate of cookies and a glass of milk out for Santa (which he loved! He didn't even leave any crumbs behind).
The pic in this post was taken last year when Will was also here, along with Blake and Emerald. Did we really have a tree? Uh, yeah, I guess we did. . . . Jack's idea. . . I humored him. This year he was too busy painting my Berkeley Writing Salon to look for a tree. Ooops, my wine seems to have disappeared. Time to end this post.
Here's an evening view of my "old" street, Moultrie - where it intersects with Tompkins. I took it from the corner of Andover and Tompkins. Even those ugly white and orange PG&E construction barriers looked lovely to me in the magical dark.
It's now Sunday morning, and Jack has already gone off to finish painting the trims and one last wall in Berkely, and shampoo the carpet. There's still the bathroom to do, too, but that'll come later, after we've moved all the furniture in...and cleaned up... a project which is probably going to happen on Christmas Day, since Jack has to work the rest of the week, and since we still have a shitload of stuff to get out of Moultrie Street by Friday when the cleaners come.
The new tenants are two nice young nurses who want to start moving in next weekend; I'm trying to oblige them by being out by the Saturday, the 29th. The sooner I'm out, the better, so that I can start unpacking boxes, arranging furniture, hanging pictures, etc. at both new places.
So...while Jack is off painting and rug-shampooing today, I'll be here hauling more boxes and small furniture from Moultrie to Anderson. Tomorrow - yes, Christmas Eve - I've hired my two teenage flyer distribution helpers to come over and help me schlep stuff to the loft, where I'll also be meeting up with the electrician at noon. Later in the day, we'll stop to make some sort of Christmas Eve dinner for ourselves and Jack's kids, Blake and Emerald - and maybe rope them into a game of Scrabble.
No presents have been bought. No time for that, and even if there WERE time, I long ago lost interest in economically driven, on-demand, obligatory gift-giving. I freeze up, can't think of anything heartfelt to buy or give, and feel backed into an uncomfortable corner. It might be different if Jack and I had a big tribe of relatives who lived nearby and with whom we regularly communicated all the rest of the year. But that's not really our life, so why pretend otherwise?
I AM fantasizing about having a party for all our friends, AFTER the holidays are over. The Great Plotnik will have to come, for sure, because I bit the bullet and hired piano movers who came yesterday and hauled the piano to Jack's. It needs tuning badly now; the high notes sound like wooden plink plinks, but once that's done, the Great Plotnik will come and fill the house with his wonderful live music at our post-holiday-madness get-together. Wouldn't it be great if Ms. K from NYC could visit then, and attend?
I'm not sure what I mean by post-holiday, though. Possibly February. Or April....
That's all folks. I'm off to pack and haul.
You rarely see this many leaves on the ground in Bernal Heights. What a treat it was for me...and yes, Olivia too, although I hate to say why. We were on our way up to Bernal Hill (surprise surprise); what I liked best about this particular jaunt to the Hill was that one of the other regulars said, "That Olivia, she's the Queen of the Hill."
I did a snorty laugh and said, "Yeah right," and the woman replied, "No really, I"m not kidding! Olivia rules this hill!"
And actually, she was right. Olivia LOVES the hill, and it shows. She goes joyfully beserk, plays like a maniac with other dogs, runs like the wind (she loves to whip the other dogs up into a "let's all chase Olivia!" frenzy), and just generally partakes of everything the Hill has to offer...with such delight.
Let's see...what else. Nothing you don't already know. I spent the day packing boxes and putting them by my front door. Did this until my lower back started to hurt too much to keep going any longer. Progress is being made. (And Jack says the green accent wall in Berkeley looks really good.)
And one of my teachers sent me chocolate in the mail. I'm ending my day with several bites. Other than maybe a big fat unexpected check, chocolate in your mailbox is about as good as it gets.
Originally uploaded by my.third.eye
Moving To-Do List:
1. Meet piano movers tomorrow morning at the Moultrie cottage: check
2. Meet electrician next Monday (yes, Christmas Eve)at noon at the SF loft: check
3. Meet plumber at Berkeley classroom Thursday 9 a.m.
4. Schedule appt. for cleaners to come to Moultrie: to do
5. Move six chairs from Berkeley to SF classroom: ??
6. Move six chairs from Moultrie to Berkeley classroom: ??
7. Get the Berkeley classroom and bathroom painted (that's starting today, Jack is already over there; I got up at 5:30 a.m. in order to make final paint color decisions before he left
8. Continue with packing up Moultrie Street. NOW. TODAY. It's 9:45 a.m. and I must get over there. Books to pack. Dishes and other kitchen paraphernalia to pack. Lamps. Pillows. Pictures off the walls & packed. TV. Stereos. End tables. Coffee tables. Bookshelves dismantled. Closet full of office supplies.
9. Start taking boxes to the loft.
10. Take more boxes to Jack's garage.
11. Drag more stuff onto the sidewalk and put up a FREE sign.
12. Remember to walk Olivia
13. Remember to eat
14. Remember to do basic Writing Salon work duties, as usual - return phone calls, pay bills, make more flyers, do more marketing for Winter Session classes
15. Holiday shopping? Holiday partying? Ha ha ha ha ha ho ho ho ho no no no no no I don't think so....
...All the mundane details of my daily life? Um...okay. A few recent activities not in order of importance or unimportance:
1. Ordered 20,000 more Writing Salon postcards (not kidding, not exaggerating). This should last me two years. I distribute 2500 per session.
2. Had my hair trimmed in order to counteract the "hair texture changing effects" of the henna/indigo dye that I put on my hair a week or two ago. It was really interesting, actually. My hair became MUCH shinier and silkier, which was lovely. But it also got heavier and lost some of its wave and bounce. Jon, my haircutter, noticed the difference right away, and immediately set about "fixing" it by doing a bit more layering and redistribution of the hair weight.
3. Saw my breast surgeon, the one who did the surgeries two years ago. Of course, at one point when I told her something I'd chosen to do (a thermogram) she spoke down to me, being quite patronizing without even realizing just HOW patronizing. It wasn't so much that she summarily dismissed this procedure as "useless," it was the WAY she spoke to me, as if I were a child who needed to be lectured/chided/set straight in no uncertain terms. As if I didn't have a brain in my fuzzy wuzzy little head. As if it would never occur to her to think that I might have chosen to do it because I researched and thought and thought and thought and researched some more. If she HAD considered the possibility that I might have an intelligent, inquiring mind, she wouldn't have spoken in such an insulting way. Would she? Surely not. I will try to give her the benefit of the doubt, which absolves her of half her obnoxiousness.
However, there are other things about her that I like very much. And I don't have the energy to go out searching for a different breast surgeon, because I'd probably have to go through who knows how many others who would be every bit as patronizing as she was. It's not worth the struggle. Gotta pick my battles carefully.
4. Picked up a copy of the new Good Life calendar for 2008, which features photos of Potrero Hill and Bernal Heights. Two of the photos are mine! April and November. One is of a row of pastel colored houses on Bocana Street, the other is the view out Jack's and my upstairs office window - lots of houses and also Paul Revere gradeschool. (Oh, and my camera is half broken now...something wrong with the sliding thingie that makes the lens go in and out. I don't think it'll be fixable; that is, it'd make more sense to just get a new camera, since I want to graduate to an SLR, anyway. The only obstacle is, uh, money. But I'll think about that tomorrow.)
5. Am getting ready to pick out paint colors for the new Berkeley classroom. In fact, I can't write any more of these riveting mundane details right now, because Jack wants me to call him by 4 p.m. so that he can go by the paint store and pick up the paint on his way home from work. Ever the efficient one; that's Jackie Pie for you.
Last week, the Oncologic Drugs Advisory Committee (ODAC) of the Food and Drug Administration (FDA) voted 5-4 to recommend against approving the drug Avastin for first-line use in advanced breast cancer. In clinical trials to date, Avastin has not been shown to extend overall survival or to improve quality of life for women with metastatic breast cancer.
However, the FDA is not bound to heed the advice of ODAC, and Avastin’s manufacturer, Genentech, will be lobbying hard to persuade FDA to grant approval in spite of the ruling.
After teaching my last Round Robin class on Wednesday night (the last to ever be held at my soon-to-be-ex-cottage), I snapped a few pictures (here) to help me remember what I loved about it. The lights and shadows, the shapes of corners, the angles, the colors, the eclectic accumulation of days, weeks, months, years....not merely objects, but the stories that lived inside them.
Originally uploaded by my.third.eye
...and so, in-between my ongoing, neverending attempts to get my health insurance company to authorize payments for essential services, ie. something as essential as a test to monitor for recurrence of the breast cancer - a test that they authorized two years ago but refuse to authorize now, because.... who knows? Because they are trying to save money; no, I take that back. They are trying to MAKE as much money as possible, which requires denying claims and forcing people to appeal the denials. I'm not appealing, yet. Instead, I am trying a different tactic. I am going to a different doctor and asking her to put in a different request and to limit that request to ONLY an MRI of the breasts, rather than an MRI of chest, abdomen and pelvis (as was originally requested). Maybe they'll allow THAT.
In the meantime, I try not to worry that it is taking so long to get basic tests. So I take pictures of Livvy B. napping. And I drink my kefir fortified with raw pasture-fed egg yolks and coconut oil. And I keep injecting the Iscador (mistletoe) three times a week. Which reminds me, I think I forgot my injection on Monday. Uh-oh. Probably forgot because I was distracted by dealing with Health Net.
Do I sound pissy and annoyed? Good. Because I am. If you still haven't seen Sicko, please do. Michael Moore isn't a saint and yes, sure, he sometimes slants things more than he should. For example, he makes it seem as if the Canadian medical system is perfect, which it's not. My son Will can attest to that. He lives in Montreal and has a friend who broke his hand and had to wait eight hours to be seen in the emergency room. But EVEN SO, their system is still better than ours!!!! The whole PREMISE is better. Moore also interviewed an elderly Canadian couple who were going to the U.S. for ONE DAY, and who made sure to buy special health insurance that would cover them for their ONE DAY jaunt to the U.S., because they were so afraid of anything happening, such as an auto accident, while they were here. What if they got hurt, were taken to a U.S. hospital, and ended up with a $60,000 hospital bill (which is what happened to a friend of theirs who had gone on a trip to Hawaii). The thought terrified them. As well it should.
Okay. First rant of the day is done.
Today a small masterpiece, a sinuous path among the poppies, drew Mrs. Somers along. (She lived for the heat of the sun, although she didn't know it.).
Some people will travel to the farthest ends of the earth in search of miracles and mystery, but Mrs. Somers dressed herself each morning and, after her toast, when the little teapot clock over her oven said nine a.m., was more than content to steal away no farther than a block (or two or three) around the neighborhood.
Her morning walks were but a tiny bite taken out of the day, yet they kept her going. She felt pulled along by the stalwart presence of city flowers that persevered without fail, all year long, despite the toxic fumes and inhospitable slabs of asphalt and cement. It was interesting.
This morning she passed by the hard stone wall that abutted the yard of her elderly Asian neighbor whose multi-voweled name she could never seem to remember. Then she followed the poppy-edged path that wound around the hill at the end of her street and reminded her, with surprisingly great force, that life went along its meandering way even when you could no longer please your husband in bed and, come to think of it, probably never had.
Originally uploaded by my.third.eye
Margaret lived in a one-room studio apartment. Every day after work she came home and did predictable things. Hung up her red jacket. Turned the thermostat to sixty-eight degrees. Opened the refrigerator and stared at the bag of eczema'd baby carrots.
When the weekends arrived she allowed herself to see every step forward as a step into the unknown. She pondered her most secret eggs while lying in hot patches of sunlight, or went for long walks in search of tree trunks that curved back toward the ground. Or, better yet, she searched for nothing.
During her walks she clung to a small new camera that was rapidly becoming her antidote to life's wide array of disappointments, ugly run-ins with her own perfectionism, and the steadily ongoing demise of her most precious illusions.
One day, surrounded by a few really beautiful hours and an unexpected burst of rain, she stood on a revelatory street corner as a monsoon of euphoric intuition swept through her forehead chakra. All thoughts and words rushed out the soles of her feet and into the gutter.
TWISTING THE RECORD ON VITAMIN D
(taken from Ralph Moss's newsletter on his website, CancerDecisions.com)
A team of researchers led by National Cancer Institute (NCI) epidemiologist Dr. Michal Freedman has published an article suggesting that vitamin D is highly successful in reducing deaths from cancers of the colon and rectum. The researchers studied 16,818 people who had joined a nationwide U.S. government health survey between 1988 and 1994. The volunteers were then followed through the year 2000, by which time 536 had died of cancer. The study found that people with relatively high blood levels of vitamin D when they entered the study had a 72 percent reduction in their risk of dying of colorectal cancer compared to those with lower levels of vitamin D.
The article was published in the Journal of the National Cancer Institute in early November 2007 (although news of it broke a week earlier). The researchers were quoted as saying that the findings in colorectal cancer were consistent with other studies of vitamin D. On the other hand, the study did not establish a more generalized link between high levels of vitamin D and a reduction in the overall risk of dying from various cancers, including those of the lung, prostate, and breast.
There are important questions about the methodology used in this study, issues that may have limited the researchers' ability to detect some of the positive effects of vitamin D. But even if the methodology and conclusions of the Freedman study were correct, it is not so much the results that are disappointing, but the spin that the mainstream media put on the findings. The reaction of the media to the study revealed in a stark way their deeply ingrained prejudice against nutritional solutions to cancer.
The Reuters news agency did report the study correctly and with a properly nuanced understanding of its positive and negative aspects. The headline of the Reuters report read: "Vitamin D Cuts Colon Cancer Death Risk." The article, by writer Will Dunham, began: "People with higher vitamin D levels are less likely to die of colorectal cancer, researchers said on Tuesday, but the vitamin does not appear to affect the chances of dying from any other type of cancer" (Oct 31, 2007). This is a fair summary of the paper's conclusions. One other source, the Canadian Broadcasting Corp., or CDC, also got it right: "Vitamin D Cuts Colorectal Cancer Risk."
But most news outlets that I saw emphasized the negative aspect of the findings, that vitamin D, as one put it, was no "magic bullet" for cancer (as if anyone said it was). Here are some of the headlines of stories that were published hours after the news of the study first broke:
* "Vitamin D May Not Reduce Cancer Deaths" (AP)
* "Vitamin D May Not Lower Risk of Cancer Deaths" (Fox)
* "Vitamin D Is Not Magic Bullet for Cancer" (Wired News)
* "Vitamin D Won't Help Prevent Most Cancers" (HealthDay)
* "Vitamin D Doesn't Prevent Cancer Deaths" (Windsor Star)
* "Vitamin D Benefit At Issue" (Ft. Worth Star)
* "No Connection Found Between Vitamin D and Overall Cancer Deaths" (Medical News Today)
* "Vitamin D Doesn't Reduce Cancer Risk" (Nutraingredients.com)
* "Vitamin D Does Not Reduce Overall Cancer Mortality" (ANI India News)
* "Vitamin D Has No Effect on Overall Cancer Death Rate" (Medical News Today, 2nd article)
* "Study Raises Questions About Vitamin D and Cancer" (KWWL Iowa)
* "Vitamin D Downgrade As Scientists Advise There is No Real Proof It Fights Cancer" (Daily Mail)
According to the study, "Colorectal cancer mortality was inversely related to serum 25(OH)D level." (Serum 25(OH)D is a standard biochemical marker that is used to determine blood levels of vitamin D.) Participants in the study who had 25(OH)D levels of 80 nmol/L or higher had a 72 percent risk reduction in colorectal cancer compared to people who had levels lower than 50 nmol/L (Freedman 2007).
A Thought Experiment
So let us now imagine that everyone who had vitamin D levels of 50 nmol/L could be brought up to the level of 80 nmol/L. This could be accomplished through the judicious use of vitamin D supplements. Another way would be through increased sunlight exposure, although that is controversial since it might also raise the risk of some skin cancers.
The American Cancer Society anticipates that in 2007 a total of 52,180 Americans will die of colorectal cancer, representing approximately 10 percent of all cancer deaths (Cancer Facts and Figures 2007). If you prevented 72 percent of these deaths you would save 37,570 lives each year. To comprehend this graphically, the seating capacity of Fenway Park in Boston is 38,805. Thus, you could nearly fill this stadium to capacity with the people whose deaths from colorectal cancer could be avoided each and every year. Worldwide, the United Nations estimates that there are 500,000 deaths from colorectal cancer each year (W.H.O. World Cancer Report 2003). A 72 percent reduction would mean 360,000 lives saved each year. That's a lot of lives saved and a lot of misery avoided!
There is some disagreement over how much vitamin D is necessary in order to raise the blood level to 80 nmol/L. As a general rule, the government advocates the intake of 400 IU vitamin D per day. But some Canadian experts feel that a minimum of 800 IU/day to 1000 IU/day may be needed, with up to 2000 IU/day to 4000 IU/day in special circumstances (Canadian Pediatric Society 2007).
One hundred tablets of 800 IU of vitamin D can be purchased on the Internet for under $2.00 ($1.94). Thus, most people could supply themselves with sufficient amounts of supplemental vitamin D for 2¢ per day, or around $7.50 per year. By comparison, Leonard Saltz, M.D., an expert on colon cancer treatment at Memorial Sloan-Kettering Cancer Center, N.Y., has estimated that the cost of chemotherapy for advanced colon cancer is approximately $250,000. Thus the cost of treating just one case of colon cancer would be enough to prevent death from colon cancer in over 30,000 cases. This is a perspective that somehow failed to come across in the vast majority of recent media stories about vitamin D and cancer.