My Great Breast Cancer Adventure

Eight Years Ago

 

Eight years ago I was diagnosed with breast cancer. My reaction: terror. 

For a very long time -- I can no longer remember how long, exactly, but at least a couple of years -- the terror was keen and unrelenting. World turned upside down and inside out.

It felt like I would never be free from that pull of . . . the undertow. Every day, no exceptions, I thought about the cancer, I thought about death and feared it.  I feared whatever terrible things might come next. I feared pain. I feared so much. I was consumed by fear and dread.

Women who were farther down the breast cancer road said it would get better, slowly but surely. That I would get better at coping, at being braver despite my fears.

Miracle of miracles, I did. Slowly but surely. 

Am I no longer fearful? Ha ha, of course not! I am still a big fat fraidy cat. Also a whiner.

BUT.  I am much less fearful. I live with cancer now, much as I live with any and every other pro or con in my life. It's just one part of the whole big list of "parts of my life." It used to be this huge, glowering monster that stood out above everything else. Its shadow cast a darkness that swallowed up all the other, smaller parts (seemingly smaller at the time, that is) of my life.

Now? Now it's just one more thing that regularly gets put on one of my many, everchanging "to-do" lists.

Buy more dog food: CHECK.
Send new batch of poems to Julie: CHECK.
Start working on Fall Session class schedule: CHECK.
Change date of next chemo appointment, and don't forget to ask about MRI results: Check. 
Hair appt: CHECK
Skype Will: CHECK
Clean up bedroom!: CHECK

 

High Drama

You may be pleased or stunned to know that I am writing this not from my couch or bed but from a chair at the Writing Salon classroom. Yes, Jane left her house. Shocking. She had to move her adorable little Smart Car because the street cleaner was coming, so she decided to zip over to the loft (she likes to refer to it as "the loft" more than "the classroom" because "the loft" sounds so urban cool) in order to "check on things."

Mostly she just felt restless and also sick of trying to work while simultaneously trying to ignore the dirty dishes/filthy kitchen, her messy desk heaped with undone to-do stuff, her stacks of handouts on the dining room table still sitting there even though the workshop she made them for (these being extras) happened three days ago.

So Jane escaped to the loft, where she straightened topsy turvy pillows on chairs, put an abandoned thermos on the lost and found shelf, washed honey off a plate that someone forgot to wash, pushed one extra chair back into a spot behind the banister, filled up the almost empty hand soap dispenser in the bathroom, noted that the bathroom shower liner was growing tons of disgusting mold and wondered why the commuter tenant wouldn't simply toss it into the washing machine that is in the closet two feet from his bed upstairs, checked to make sure that last night's teacher actually remembered to turn on the dishwasher after loading it (he did, good boy), refilled the Brita water pitcher that was sitting waterless in the fridge, wiped ginger cookies crumbs off the kitchen table, cleaned the new whiteboard, and threw out the spoiled half and half.

Then she sat down in her favorite chair, an orange swivel chair that she wishes she had a place for at home, and began to labor over  assorted, stunningly boring administrative tasks.  Three hours passed, and her laptop battery's charge went down from 100 to 19 percent.

She is now debating whether to plug in the adaptor cord that's in her purse, and move on to creating and sending out the "Reminder" of the her next Round Robin class that starts this coming Sunday. She sends this reminder out, via Constant Contact, a few days prior to every new session, in hopes of roping in a few more procrastinators. Right now she had 29 signups. Not bad, but last year she was getting more like 40 to 45.

I know you are mesmerized by the romance of Jane's high drama existence. But I must leave you now. I must toil on, probably until hunger for something that contains wheat (which I am not allowing myself to eat right now) sends me racing back to the kitchen (that looks like it belongs to twenty-seven frat boys).

Over and out from The Loft. 

Here is a photo of my orange swivel chair, occupied by a former student of mine. A lovely person! 

I've Just Joined a Very Cool Cult!

I think I've just converted to membership in the Cult of Denial. A friend of mine, in a not-too-long ago email, referred to denial as her savior, or something along those lines. I wondered what she meant by that. Now I no longer wonder. I get it.

We're told to see denial as a negative, an avoidance of "the truth." As a chicken shit way out of dealing with the issues. Denial means all you've done is sweep the dirt under the rug. Run away from "reality."

Fuck that. There are about a million things well worth denying. Temporarily. . . or even forever.

For example, I can work like hell to deny the supposed implications of my currently skyrocketing tumor marker numbers and my annoying CT/Pet scan results (extensive diffuse bone mets, including a lesion at T4 spinal vertebrae), blah blah blah.

Will this denial be a bad thing? A cop out? A coward's choice? (BTW, I and my docs pretty much already knew the gist all of this, without having had all the tests. I just didn't know as many of the specific details, and details make it seem scarier. But nothing has actually CHANGED except that maybe it's growing faster again, no doubt because I've been off medications because of the rash and the prednisone etc. etc. -- the conundrum that has affected all my best laid treatment plans ever since last July.)

Poem

Like a Honeybee

Okay, I admit it, I've been obsessing,
clutching at clichés: wise trees, mystic rain.
I've been waxing poetic, frantically embracing

a pseudo parental Universe, interlacing
holy rays of sun with magical visions; inane.
Oh yes, I admit it. I've been obsessing.

Spiritual messages prance in via angels, promising me
easy death, rebirth, breath turned to wind, no pain.
I've been waxing poetic, carefully caressing

the years since that lump appeared, confessing
my addiction to epiphanies: to seek the Aha! (that drain).
I admit it. For sure, I've been obsessing.

And I've become a photographer too (so surprising!).
Mystery after mystery lurks in my viewfinder. Reborn,
I've been waxing poetic, visually addressing

immortal leaves, fallen armies, mottled, torn, resting
their way through the portal, then bursting into oblivion.
Oh yes, I've been obsessing, and I'm confessing.

Will my fleshy body shift like sand, my cells all nestling
into new formation, millions of grains born yet again?
I admit it, I've been greedily fashion-hungry, dressing

myself up in every color, primping and requesting
solutions to size and hemline problems, petty and vain,
while honeybees are dying in droves, scientists left guessing

as to why. Okay, but I won't give in to obsessing about
this epithet: stage four. The beekeepers are forlorn, it's true,
and yes, we are all disappearing. It's distressing, but still I am
waxing poetic; they require all we've got, these arduous blessings.

How Doctors Die « Zócalo Public Square

It's been a while since I've posted here, obviously. Nov. 11th, to be exact. Wow. Two months! But now you know that I am still here, not dead, not even sick or miserable or suffering from some new awful medication. I'm in another "good" phase of having breast cancer. And I'm not being sarcastic. I really do see it, now, as a long-term (hopefully) experience that is full of ups and downs, good phases and not so good phases.

The whole first half of 2011 was a very bad phase for me. Most of the second half of 2011 was a successful, although very slow-going, attempt to get out of the bad phase rather than die.

So now I am out of the bad phase. Not out of the woods, but out of the bad phase. Which I am very happy about. It's getting easier and easier to take life "one day at a time." I am overjoyed to be able to post this post. Overjoyed to be able to sit (not lay) on my couch . . . and to do so without horrible discomfort or pain. In short, I am overjoyed that I am back to living a relatively normal life - driving a car, working to earn a living, seeing my friends, enjoying my relationship with Jack (and my beloved pets), doing photography, writing, all of it. Just being able to get dressed and leave my house again is a huge wonderful thing.

What prompted me to post something today was the following article that one of my fellow "breast cancer discussion list" members forwarded to the list. It's easy to read and was, for me, compelling. It makes so much sense! I hope every one of you will read it and benefit from it. Here's how it starts:

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

Just go HERE to read the rest of the piece, which was written by Dr. Ken Murray:  zocalopublicsquare.org

Cancer Bitch - greenheron - Open Salon

It is October. Again. Pink ribbons. Heart wrenching stories of the stricken. Images of courageous smiling bald headed women in pink T shirts. Companies that donate a percentage of product proceeds to research if you buy this or that shampoo, yogurt, deodorant, or spaghetti sauce. Everyone gets on board the pink boat, unified by the desire to cure cancer.   

Cancer Bitches ride a different boat. Many of us dread October. We won’t tell you that. We would seem angry ingrates for your kindness and concern, so we quietly put our heads down until it is over. We endure the media voices speaking in hushed low tones, using the lexicon of war: battle, warrior, survivor, victim, courage. We walk down streets and supermarket aisles festooned with pink ribbons. We skip article after breast cancer awareness article that highlights anti-cancer diets, anti-cancer exercise, anti-cancer vitamins, recent anti-cancer discoveries, coffee/wine/green tea/chocolate/aspirin/tumeric. 

Read full article (post) here:

via open.salon.com

Me: It's well worth the read. I'm often a Cancer Bitch too, and I frequently grapple with many of the same issues that are brought up in "greenheron's" piece. Once you are diagnosed with something like BC, your whole social world transforms in order to accommodate (whether you like it or not) this new facet of yourself that everyone you know is whispering about, worried about, curious about, sorry about, flipped out about, optimistic about, pessimistic about, wanting to give you advice about...or even not giving a whit about. This new social scenario can be quite a challenge to navigate.

And there's more to bitch about, too! Stuff I have not touched on much, in this blog (hard to believe I haven't bitched about every single possible bitchable thing there is in relation to BC, but it's true, greenheron shines the light on a few things that I have neglected to properly bitch about!

Doctors, Doctors, Who's at the Doctor's?

I believe this is called "cross-posting."  (???). It's for industrious but also lazy people who are trying to keep more than one blog going (industrious) but who also don't want to keep more than one blog going (lazy). So they put a link in one blog that takes you to their other blog, like I'm doing now:

My Open Salon Blog Post

Xeloda Update and All that Goes with It....

A week ago I had another "check-in" appointment with my oncologist. He looked at my latest blood tests: CBC and tumor markers (CA15-3 and CEA) and said they were great, as in my grade would be an A+ if were in a school for cancer patients. My tumor markers are continuing to decrease at a very good rate. In three months my CA15-3 has gone down from 1005 to 440. Normal would be close to zero. And my CEA has gone down from around 100 to 35'ish. Again, normal would be close to zero. (However, it's good to keep in mind that there are very healthy people whose numbers are much higher than zero, and there are very sick people whose numbers are in the normal range. So....as I said in an earlier post, tumor markers are best used mainly as a way to see how your disease is "trending." Nothing more.

Living with Cancer - And Even Writing About It

I admit, I do at times get sick of trying to keep this blog going. Must I really continue to write about it (my breast cancer)? Well, no. Nobody is holding a gun to my head. I could stop. Could just close it down and get on with leading a more private life. Not this glaring, blaring self-exposure. Why do I do it? Why be this open book for all to see?

I do some version of this post on a fairly regular basis. But here I am again, still posting, even if not every day.  I guess I sorta feel like: Shit, I started this thing, I committed to it, and now I need to stick to my commitment. Because...because... it helps me cope, and I hope it helps a few others to cope. Or to better understand what this disease is like.

Health Writing - DeMystifying Medicine for the Masses

Given my six-year intensive foray into the land of doctors, medicine, and disease, I've been reminded of how important it is for SOMEONE to deliver GOOD health and medical information to "the masses." Much of what we read in mainstream newspapers and magazines regarding the lastest medical studies, controversies, and "discoveries" is too often reported by media people who have no idea what they're talking about - not really. They have neither the knowledge nor the expertise that would enable them to responsibly report on the medical and scientific issues of the day. Ditto for television reporters.

Here's one small example. You pick up the newspaper and read an article that says "the study shows that hormone replacement therapy increases a woman's risk for breast cancer."

What the article doesn't say, however, is that this risk was not shown to be  "statistically significant." In other words, if the risk increases by  a very very small percentage, researchers and doctors do not consider it significant. But when lay people read the article, all they think is, "Oh my god, I can't take estrogen because it will increase my risk of breast cancer!"

Wrong. It's WAY more complicated than that.

It's no big deal if you make a mistake reporting on the lastest fashion trend in shoes, but it's a pretty darn big deal to mislead the public if you're reporting on the latest national breast cancer study.

 

My Armpit, My Spirituality, My Shame, My Chi, Etc.

Flasback to January 2010:

Now that my aching breast has been dispensed with, my armpit aches. Bummer. I'm worried about this new development. But I try to focus on work instead, try to think up ways to keep the daily grind meaningful. Creative ways. Inspired ways. Good luck you, chump, I say to myself.

I want my work to be, as the Buddhists would say, my right livelihood, maybe even my spiritual practice. I think a lot about what it might mean to have a spiritual practice. I commit to walking the dog every day and manage to do so every other day. While I walk I take photos. Photography is my new hobby and, I am beginning to think, probably closer to a spiritual practice than my daily grind. But maybe not. Maybe I am wrong about that. Who knows? The Dalai Lama?

Or what about yoga? I often think about doing yoga, about starting to practice it religiously, not today of course but someday. Sometimes I attempt to do simple stretches, but if I stretch the wrong way my armpit begins to ache or my back goes kaput, and I immediately shift into reverse.

Blue Breast: Second Surgery

ALERT: I know things now that I didn't know in 2005. For example, if I had known then what I know now, I probably would not have allowed them to do the sentinel node biopsy, or to take any of my lymph nodes, period. It's even possible that I might not have had the lumpectomy. So please keep this in mind when you read the post below, and do your research on lymph node removal and breast cancer; don't just assume that it's going to help you to have nodes biopsied or removed. You can start your research by going to breastcancerchoices.org.

A flashback to 2005:

The first surgery is over, the lump is out, and the diagnosis is in: Breast cancer. Stage two, invasive, intermediate grade, a mix of ductal and lobular. The good news is: The cancer has been excised. The not so good news is: I have to go back for a second surgery, to get a wider excision margin and also to see if any of the cancer infiltrated my nodes. The surgeon will inject a dye into my breast. The dye will travel along the glands that lead to the nodes. My breast and pee will turn blue for a day or two.

I can't seem to follow a straight line these days. I start out heading toward the doctor's office, then do a zig in the direction of death, followed by a zag in the direction of life. Finally I reach the hospital at the corner of Fulton and Shrader, with no idea how I got there.

Tumor Marker Numbers - Helpful but Not Definitive

I got good news a couple of days ago. My CA15-3 and CEA tumor marker numbers, which have been steadily rising for the last year, are going down. This seems to be a result of the low-dose chemo drug, Xeloda, that I have been taking (in pill form) for the last twelve or . . . maybe sixteen? . . . weeks.

My understanding is that the actual numbers are not easy to interpret. A woman can have very low numbers and be near death. A woman can have very high numbers and not be near death. There must be some reasons why this is so, but I don't know exactly what they are. Maybe someone reading this, who knows more than I do or has time to do some research, can explain it.

My Ache: The First Biopsy

A flashback to the summer of 2005.

My Ache

When I arrive at the hospital, everything bodes well. I locate and enter the parking lot that I worried I wouldn't know how to enter or pay for, then I successfully navigate my way to the right elevator, then through the maze of hallways, and finally to the correct suite of imaging rooms. Although I have lived for more than 25 years in San Francisco, which is not really all that big of a city, I am still a small town mid-western girl at heart, still not at ease with the plethora of urban options even when they are confined solely to one large hospital.

My waiting room experience also goes surprisingly well. According to Cosmopolitan magazine, Christie Brinkley attributes her trim physique to vegetarianism, Jennifers Lopez and Aniston both pump iron, and Halle Berry does power yoga. The mammogram goes well too.

But the TV-like screen of the ultrasound machine presents a view of my left breast that reveals a distinct black mass. The mass quivers, shifts, disappears and reappears as the radiologist moves a rectangular metal sensing device back and forth over the quadrant in question. When, after a minute or two, the doctor doesn't turn to me and cheerfully announce, "All right, all done!" — when, instead, he silently and intently proceeds to push numerous buttons and switches, in order to further scrutinize the lump, I feel my first jolt of unease.

Alternative Cancer Treatment Option on Battlestar Galactica

Another unexpected synchronistic twist, for me, re: Battlestar Galactica. I finished watching Episode 4 today, and in this episode it was revealed that Mary McDonnell had decided not to do the standard recommended chemo treatment. She told the doctor that her mother had also battled breast cancer, and that she, Mary, had watched her mother "endure" two years of the "gold standard" chemo treatment.

The Old Farmer with Cancer

Sometimes I fantasize/hope that there is a grain (or more) of truth to stories I've read of folks who get dire cancer diagnoses, are told they have only a short time to live, are advised to do a bunch of treatments that will make them ill and gobble up everything they love about their lives until they die, who stare their doctor in the eye, say "Thank you," walk out the door, and proceed to go right back to living their lives the way they've always lived them.

I'm talking about people like the old farmer who isn't about to NOT do what needs to be done on the farm. It's unthinkable to him...nonsense. He doesn't really even ponder the dilemma or think of it as a dilemma. For him there is no choice to be made. He's going to keep right on working, and that's that. End of story. And guess what? He doesn't die as predicted. He lives for several more years, workin' away.

Writing to the Void, Battlestar Galactica, Coincidences, Etc.

Yesterday I got off track and didn't do my daily write first thing in the morning. Big mistake. I forced myself to write a few lines of crap at close to midnight. But I did it, because I always tell my students to do it NO MATTER WHAT. Just do it, even if it's crap. Stick to the commitment you've made to yourself.

Of course, I doubt that my writing partners are excited or thrilled to receive my crap writes, but they can always ignore or delete them. I just need to send my writing out to a few someones, because sending to The Void is no longer something I can do. It's too lonely, too absurdly lonely.

Late yesterday afternoon, long before I got it together to write my crap write, I watched the pilot epiode of a now-over TV series called Battlestar Galactica. I know. Huh? Come again? But I stumbled upon it when I browsing around looking for something decent on Netflix, and after reading some reviews I decided to check it out, in great part because I like the two actors who star in it: Mary McDonnell and Edward James Olmos.

Excerpt from an interview with Edward O. and Mary M.:

Mitchell May - Healer and Teacher

Mitchell May is a healer and a teacher whose gifts are recognized worldwide. Told he would never walk again, Mitchell’s miraculous healing from a near-fatal car accident over 35 years ago (in which he sustained over 40 fractures, severed nerves, bone loss and severe internal injuries) made medical history when he regenerated nerve, bone, muscle and organ tissue and fully healed his body.

via www.thesynergycompany.com

I love Mitchell May's personal story of becoming a healer, I use his Synergy products (my staples: Pure Synergy, Bone Renewal, and Manaka Honey), and I periodically return to the Synergy website and re-listen to his audiotapes that are there on the site, free to enjoy.

Salt: Waiting for the Biopsy Results

I wrote a rougher version of the following personal essay, around six years ago (in 2005), just prior to my bc diagnosis. Today I dug it out, smoothed a few of the rough edges, and felt some satisfaction in doing that, especially after having spent all day yesterday leading a workshop called "I Want to Write BUT...A Kick in the 'But' Class for...You?"

I felt like I should give myself a good kick in the 'but,' too.

Here's what I ended up with:

Salt

I woke up this morning thinking, as I once again swung my feet over the edge of the bed, about all the people I've known who have died in the last decade. My brother, my mother, my father. Tina's sister, Gabrielle's lover. That 14-year-old girl, can't remember her name, in my son's acrobatics class, whose safety buckle malfunctioned during a routine trapeze trick. Just go, I say to myself. The appointment does not require high drama, requires nothing more than two hands that can grip a steering wheel, two legs that can carry you into the doctor's office.

The Other Woman

I wrote this personal essay back in 1999 or maybe even earlier, can't remember. It was published in November of 1999, in Salon magazine (Salon.com); this was back when the magazine had a special section just for personal essays. It no longer has that section and is an entirely different magazine, really.

By the same token, my love life is now an entirely different love life. It has changed hugely over the last twelve years, as has my health. My then-11-year-old son is now a grown man!

I am putting this essay in this blog because I think it's interesting how I wrote this story about someone else having breast cancer...how I tried to imagine myself in her shoes. It feels to me as if I had a premonition of sorts, albeit an unconscious one.

Was it really was a premonition? Who knows? Does it matter? I don't know that either. But it gives me a bit of a chill to read it now. It makes me wonder about all that I don't know and never will know.

Oh Yeah, Right. I Almost Forgot. Other People Have Problems Too!

June 19th daily write excerpt:

NEWS FLASH #1: Lightbulb on. Veil lifted. Revelation: I am not the only person in the world with problems, health or otherwise.

There are many many aspects of my life that are not problems or even problematical. I could fill a cornucopia with all the wonderful aspects of my life. My eyes often well up with gratitude when I think about these things. I bet you would like an example. Okay:

I loved that interview I saw Charlie Rose doing with the ex-prime minister of Singapore. I was moved by how it led me to a better understanding of how never having had a close relationship with my father...or with my grandfather...so profoundly affected me. I was helped by watching the interview because it led me to an idea re: how I might create an imaginary father and grandfather to take the place of (or let's just say "supplement") the real ones –- to remember fondly, and to draw deep emotional sustenance from -- the kind of sustenance that little girls need from their fathers, the kind that makes them feel unconditionally loved, safe, and carried, whenever they need to be carried. Or just to have their hand held, in a firm protective grip, as they walk along the rocky, bumpy path.

The interview also, circuitously and mysteriously, led me to a better understanding of yew trees.

A Memoir about Breast Cancer? Or...not? Some Ramblings...

from a June 7, 2011 "daily write":

I wish I had a solid idea for a memoir, because the idea of writing a memoir so appeals to me. I am reading one now, on my Kindle, I forget the title. Lazy me. Okay, wait a minute. I'll go find my kindle. Hang on.

Imperfect Endings, by Zoe Fitzgerald Carter.

It's a grown 42-year-old daughter talking about the experience of being unhappily involved in her ailing mother's desire to commit assisted suicide. The book is less than 300 pages long. The writing is good but not stunning. The topic is manageable. A good topic for a memoir, set within a reasonable frame of time. 

My problem would be that I would try to include everything under the sun in any memoir I might attempt to do. I am unable to see any story but The Whole Story Up To This Point. I would go nuts mixing up all my old lovers with all my pancreatic enzymes. One minute you'd be reading about Jim's mechanical flying vulvas, the next you'd be lying with me on my expensive new infrared Bio-Mat, set to 160 cancer-killing degrees, sweating like a pig and wondering how many more minutes you had to go. Another minute you'd be hearing about how my Dad once dressed up as a hobo (bag tied onto end of stick) and let me take pictures of him out in our backyard in Brigham City, Utah, for my school paper on hobos, the next minute you'd be agonizing along with me over the pros and cons of having my left breast cut off.

Actions Taken RE: My most recent to-do treatment list

The list from my June 26th post:

Castor oil packs
Hydrogen peroxide
Coffee Enemas
Pancreatic enzymes
Homeopathy
Osteopathy
High Dose Curcumin
High Dose Glutathione
High dose Vitamin C
Artemisinin
LDN (low dose naltrexone)
Acupuncture/Chinese herbs
Massage
Bio-Mat
Infrared Sauna
DMSO
Medicinal Cannabis
Photonic light therapy

Thus far:

1. I made an appointment for a massage on July 6th. $85.00 for 90 minutes. I know many of you may think it's tacky of me to always say what everything costs, but I think it's important to emphasize the financial realities of being sick in this country. My $888 monthly health insurance premium does not cover massage. It should.

Example of a Conversation with My Oncologist

A 15-minute phone check-in, after three weeks of taking five Xeloda pills instead of four:

Me: "I think I need to go up from five to six. My fingers still aren't cracking, or my feet. I feel about the same, in terms of bones and the injured shoulder. Dr. R. agrees. (Dr. R is my trusted advisor/consultant doctor, not an oncologist per se but a practicing doctor who knows more about cancer treatments than 99 percent of the oncologists out there, because he constantly researches it and consults on it and has an open mind instead of a closed mind).

Oncologist: "Yes, we are in agreement. Up it to six for the next three weeks, then have another blood test. The test results will tell us if it has started to work. If it's not working by then, we drop Xeloda and change to something else."

Me: "Couldn't we go up to seven pills and see if that might do the trick?"

Changing My Career: Some Ideas

Here's another daily write from the past (May 17th):

Workity-work-work. For two whole days I fantasized about being a garbageman/woman, thought how nice and easy that job would be, freeing me from the hassles of interacting with people. This current job (vocation? career?) of mine requires me to interact with clients (service), students (instruction/facilitation), and a slew of independent contractors -- two dozen teachers and a 4-hour a week assistant -- (supervision/management). That is three different categories of "people interactions." My misanthrope's idea of a full-blown nightmare.

Garbagewoman: Hang on to back of truck, leap off, grab cans and junk, heave into truck, jump back onto back of truck, rumble off to the next stop. Chat with the other couple of workers, maybe. Or the driver. Say hi to early-bird clients standing outside in their bathrobes or getting into their cars about to head off to their own jobs, most of them not beloved.

Twittering, PR, and Medical Cannabis

Yesterday I spent the first half of the day with my right arm in a sling but still typing. I had to sit in a weird position using lots of pillows to support the position, but I needed to keep working on PR for the next round of Writing Salon classes. They don't just fill themselves up, ya know.

I decided to focus on Twitter, because I've neglected it for the most part, and I fear that if I don't get with the program and pretend I am 28 instead of 58, the Writing Salon will fade into oblivion. Soon no one will be looking at flyers on bulletin boards, for example. Bulletin boards probably won't even exist. Craig's List will probably become antiquated, too. I have to keep up with the reality of social networking as a means of marketing one's business. God help me.

I'm Still Here--Just Had to Take a Break from Blogging about Breast Cancer

Hi everybody. If I tried to catch you up on all the details of my "journey" during the almost-four months since my last post here, it would take too long. Honestly, I'd rather use that time to just lay back on this sunny Sunday and watch another couple of old episodes of the Canadian crime drama, Intelligence, that I can watch via Instant Play on Netflix. I don't think it's a GREAT series (Breaking Bad is a GREAT series, in my opinion), but it's good. I also recently discovered the BBC crime drama, Luther. I like Luther a lot. I particularly like the character of Alice, and the relationship between Luther and Alice.

I have been watching a great deal of TV, these last few months, because moving -- literally -- hurt too much. Various bone/muscle issues . . . the roundabout/indirect results of breast cancer that has metasticized . . . forced me to limit my mobility. I am by no means an invalid - in fact I just finished teaching a five-week class last week - but my physical activity, overall, has been quite limited. I'm not even driving a car.

Medical Update, Briefly: My body, for whatever reasons, could not tolerate the drug tamoxifen. I tried it for two months (see last post), until I thought I would rather just be dead than continue to feel the way it made me feel. I DID feel like an invalid, during the worst weeks of being on that drug. I could barely move at all, it made me so miserable. I was a stone sitting or lying on the couch, day in and day out, 23 hours a day. But that is in the past.

Breast Cancer Journey mini-update

A. Yep, I'm still alive and have even discovered that I quite like Russell Brand. First time I ever saw him was at the Oscars and I thought who the hell is this bizarre guy with Helen Mirren? This morning I am (right this minute) watching him being a guest on The View. I think he's a brilliant nutty clever delight with such dark bushy eyebrows and crazy hair and that perfect Brit accent.

B. I've been taking the drug tamoxifen for close to three weeks now. Started at 5 mg, working up to 20. My ribs are still killing me; in fact, tamoxifen causes a "flare-up" that makes the pain even more pronounced, even though that can supposedly be a good sign that this lovely (just kidding) drug is working to reverse the rising tumor marker numbers. I have not stopped taking estrogen, even though most doctors and oncologists tell women to stop all estrogen while taking tamoxifen. Why have I not stopped it? Because tamoxifen doesn't block ALL estrogen; it only blocks the estrogen receptors that breast cancer cells are trying to attach themselves to. There are tons of other estrogen receptors in a woman's body that still need estrogen and that help women to live longer and feel better while they are alive. So why deprive oneself of ALL estrogen? It's not a black and white answer. A few "thinking" doctors who are brave enough to go against the status quo are now beginning to acknowledge this.

C. The Writing Salon is also still alive, and I am even teaching my 5-week Tuesday night class in addition to the Round Robin. It has been hard to add this class to my overall workload when what I really need is to work less not more, but I need the money, and my couch spot at home (permanent butt imprint) has become too unsightly. If I leave it for one evening a week, it has time to spring back up.

D. I'm still doing alternative treatments such as taking artemisinin, homeopathic remedies, far infrared heat treatments, high doses of Vit. D and melatonin, low dose naltrexone, high doses of iodine (Iodoral), liposomal Vitamin C, etc.

E. Somebody bought one of my photo prints on Getty Images! I made $89.12! Whoo hoo! For someone to find one of your photos on Getty is like someone finding a miniscule needle in a gargantuan universe of haystacks. I felt the way I did when I got my first poem published and was paid three contributor copies.

That's all I have time for right now.

Quickie Update

Yes, still here. But haven't posted because just too busy. The new Winter Session at the Writing Salon started on Jan. 23rd, so the week before and the week after were very very busy. Combine that work busyness with all the medical business that has been going on, and who has time to post to a blog?

For the past couple of weeks, I've been going in for infusions even more often. From twice a week up to four times a week. In addition, a new component was added to the regimen: I lie on something called a Bio-Mat - actually I lie on one bio-mat, with another, smaller bio-mat on top of me, and a big cushy special bio-mat comforter that is filled with amethyst stones, on top of all that. I lie there for an hour, until I am very hot, drenched in sweat. The bio-mat sends far infrared waves six inches into my body, which in my case is pretty much all the way through my body. So it's not just about the heat, although the heat is a big part of it.

Cancer cells die if the temperature is hot enough. Also, the hotter your core body temperature is, the more vulnerable the cancer cells become, and therefor the easier it is for the Vit. C infusion to have an effect (an effect that is similar to chemo).

So...I have been spending half of every day, four days a week, doing the heat/infusions thing. It cuts into my work time, big time, not just in terms of hours lost but in terms of interrupted continuity and an inability to respond to emails and phone calls during "normal" office weekday hours. I get as much work done as I can in the morning, then am gone all afternoon (or vice versa), then come back and immediately plunge back into work, sometimes until right before I go to bed.

So...my recent days have been packed, tiring, expensive ($180 a DAY, out of pocket), exhilarating, hopeful, interesting, cutting edge, painful (ribs still fucked up, must move very slowly and carefully, still), and...just a lot, on many different levels.

Oh, and I finished my first round of homeopathic remedies (HERE IS AN INTERESTING ARTICLE ABOUT HOMEOPATHY) and am now waiting for further instructions from my eccentric practitioner who, although brilliant, has erractic hours and an unconventional way of working. (AND HERE IS ANOTHER ARTICLE ABOUT A RECENT STUDY OF HOMEOPATHIC BREAST CANCER REMEDIES, DONE AT M.D. ANDERSON...A HIGHLY RESPECTED CONVENTIONAL CANCER CENTER)

I have to go! Bye. Thank you for being out there and for your occasional comments and words of encouragement.

Althea's Homeopathy Appointment Continued

Dr. Blackstone padded across the threadbare gray carpet on his thick socks. A few days before her appointment, she had watched him being interviewed on an internet video, one that had been done several years ago. He'd had a pot belly then, and he had the same one now. He preferred to take off his shoes whenever possible, he said, because he liked to feel more grounded.

Origami birds twirled over the examining table. Big, now old-fashioned stereo speakers stood at the end. The huge stereo system did not surprise Althea, since Dr. Blackstone's office operated without accepting credit cards and without relying on computers. It was cash or check only, and the receptionist was allowed to input only the most minimal of data into the one antiquated computer. Everything else was paper and pen.

A whale swam out of an ocean picture on the opposite wall. Colorful wooden figurines carved by Indians and Native Americans crowded the shelves above his funky old desk. A dusty potted plant, some sort of palm, stood by the one small window that looked out onto an airwell and was taller than he was.

She tried to picture their separate life trajectories on an imaginary map. His lines ran from New York City to Philly to Missouri, hers from Georgia to Los Angeles to Kansas. And then they had converged. Now here they both were, sitting face to face in his decades-old office in the Marina District of golden San Francisco. He was asking all sorts of questions. Her answers, she knew, would be tossed into the remedies.

What had she liked in school? Had she dated as a teenager? Had her periods been painful? What illnesses had she suffered? What griefs had she known? When she was sad did she want to be alone or with others? What tragedies had befallen her?

Althea's Homeopathy Appointment

The night after her visit to the old healer, Dr. Blackstone, Althea remembered two of her dreams. In one she had been with another mystery lover with whom she had the perfect chemistry. They had never slept with one another. He was wearing a gray suit, nicely tailored. They were standing close to each other, near a counter, with other people in the background. When he stood next to her it was as if they were enclosed in a small closet, just the two of them.  She could barely breathe or move. No words were spoken. Everything was known between them.

In the other dream, she peeked through a torn barbed wire fence and saw green, leaves, the beginning of a path. As she stared at the beginning, the path became the space between two rows of orchard trees, and she was taken back to her childhood, one of its rare idyllic moments. Although she couldn't see fruit on the trees, she knew it was an apple orchard.

"Is this a phone number where you can be reached at night?" Dr. Blackstone had asked as the appointment ended and they both stood, he glancing over his notes, she pulling on her coat. It was possible, he said, that she might receive a phone call from him some evening, if something else occurred to him.

Then he had taken two steps over to her and held the small piece of creased paper, like a cigarette rolling paper only thicker, near her mouth. "Open up," he said, and she had opened her mouth like an obedient child, and he had aimed the contents of of the paper, a pile of tiny pills that were really only a bit larger than granules, into the space under her tongue.

"I think these will help you to feel a lot better, soon," he said in his quiet voice. She looked at his thinning gray hair, his face that appeared to be in its sixties although she suspected it was much older. He wore a rumpled, long-sleeved black and white plaid shirt, shabby gray corduroy pants, and what  seemed to be either very thick gray socks or a pair of gray bedroom slippers that may have had leather soles. No shoes.

In the Infusion Room - Random Notes

I watch the needle enter the inner crook of my right arm. A clear liquid potion runs down a tube and enters my vein. My arm becomes cool, as if it is filling with a mountain stream. Garrett, the male nurse, wears a blue short-sleeved top that has no buttons in the front. I have not yet determined if it fastens in the back or if he pulls it over his head.

I know that Garrett learned to do intravenous infusions while in combat. Somewhere, I suppose, in the Middle East. He says he has been doing this job for more than ten years. There is something about Garrett that I don't trust, but also something that I do. He's quick, smart, funny. But his eyes are not kind. They are wary. He hides things. But what things? I feel I must be on my guard around him. And yet I allow him to puncture my veins. More about this later. I have time, right? Yes.

Two hundred milligrams flow into my body so quickly that before I know it I am back on the sidewalk heading toward Canyon Market to buy a deli salad.

As time goes on, these infusions will take longer and longer. Right now, my "virgin" veins are healthy and strong. But soon they will be scarred from all the puncture wounds, wounds which will never heal, I am told. The needle, which is now merely a quick prick, will begin to hurt when Garrett attempts to push it into my no longer virgin vein. Scars will accumulate on the vein and form a hard lump.

When the needle finally, painfully enters my gimpy vein, the entry spot will continue to hurt during the infusion (alpha lipoic acid, followed by high dose Vitamin C). My arm will ache and ache during the entire two-hour period.

But I don't know this yet.

Addendum to Yesterday's Post

The most important words were:

" . . . which he said with a smile, and that made me smile"

The post was not meant to be a condemnation of the idea that someone else's "pain" (struggles, challenges, conflicts) could be "entertaining" (interesting, evocative, compelling, informative, etc.).

Jay-Z tossed these words out, off the cuff, in the context of a larger answer that he was giving about his art. I could tell that these words popped out spontaneously, and were said with a wry, kindly smile. There was humor in the way he said the words. I liked the humor, I liked the boldly abbreviated way that he summarized what could have been a longer and more pretentious answer.

In other words, I don't mind at all that my "pain" (so to speak) can be "entertaining" (so to speak) for others. In fact, I am glad that it can.

My Pain, Your Entertainment

A couple of days I didn't even know who Jay-Z was. I'd heard the name and figured it had something to do with rap music, maybe, but that was it. Then I saw him interviewed on Charlie Rose the other night, and I really liked the guy. Don't know if I'd like his "music," but I liked the way he looked and talked.

I googled him.

These days I google pretty much everything and anything that I have the least little question about, ranging from "what are the alchemical properties of copper?" (search term: copper alchemy) to "translation to English: Prachtig strijklicht; zelfs de muur komt tot leven! Weer een mooie toevoeging voor je verzameling 'Urban trees'!" to "number of pints in a gallon?" to "Andy Garcia's wife photos" to "actor Tom Skerritt" to "hydrogen peroxide cancer" to "artemisinin breast cancer" to "pronunciation of Sidney Poitier" and oh so much more.

I found out that Jay-Z is one rich muthafucka. And he's married to Beyonce. And he bought her a five million dollar wedding ring. He spends money like it's peanuts or confetti. Usually I hate this kind of spending. Garish gigantic consumerism. Flashy, over the top, absurd American greed. Yachts, gold necklaces, eleven cars in the garage, three swimming pools in the plantation-sized back yard, entourages. . .

I was surprised, because Jay-Z doesn't come across as a flashy greedy typical celebrity type.

This morning, when I decided to check out the new Oprah TV network, OWN, who should pop onto the screen but good old Jay-Z being interviewed again. And again I really liked the guy. Despite what I had just found out about his lifestyle.

Another mystery!

Here's a pithy quote from Jay-Z, which he said with a smile, and that made me smile: 

"My pain, your entertainment."

It may sound brutal, but such is the way of our world. This is one big reason why my blog "hits" rise so dramatically when my breast cancer "flares up" and becomes scarier again. My "struggle" is much more entertaining than my periods of NED (no evidence of disease).

Rising tumor markers are more dramatic than static tumor markers.

There's nothing (slight exaggeration, sure) more entertaining than the possibility (NOT the certainty, mind you) of imminent death.

Walking Home

Walking home from
the doctors' din, dozens
of leaves quivered above
her head. Sometimes

all you needed
was that.

She strolled the cold street, climbed
the hill. One leaf fell to
a stop at her feet. She slowed
to shoot a close-up.

Old leaf, dying face

cracked and
veined, looked up,
refused to embrace
the prognosis.

You Are Washing Something

You are washing something.
A dirty tub. A dusty table.
A bug spattered windshield.
A wine glass at your 53rd
birthday party.  You are washing
something. A floor. A face. A
scar that is aching and swollen
and numb around the edges.
You are washing something.
The cat licks her paw. She is
meticulous. Your high heel
is lying on its side, on the floor,
on top of the pathology report.
Your hair is cut short now, shorter
than it has ever been. You are
washing something. Tomorrow
you will wash your new short
hair, which will dry faster than
ever before. Your diagnosis
is a maze of facts that are
impossible to decipher. You
are washing the mystery. Your high
heel is lying on its side, on the floor,
on top of the word metastatic. You
are washing a scar, you are washing
something.

Cheating on Posting

I found this write from Oct. 3rd, 2005, done shortly after my first armpit (sentinel lymph node removal) surgery. Amazing to me, after reading this, how little my life (uh, I mean Lenore's life) has changed in certain regards over the last five years. The only big difference is that now I want to have a Groucho Marx costume party instead of a hat party.

Preparations

Lenore was always preparing for something. A class she had to teach. A room she had to clean. A meal she had to cook. Life was a series of preparations. Now she had added doctor appointments to her list of things to prepare for. There were always forms that had to be filled out ahead of time. A plethora of forms. In duplicate. Redundant. Over and over. Always requiring some piece of information that she didn't know by heart. A number. A date. A time. A place. A name. Every form sent her on a scavenger hunt through her disorganized papers, files, piles.

Next it was the pathologist. Six forms. When was her mother diagnosed with ovarian cancer? What were the six other doctors fax numbers? And so on.

Yesterday she had played hookey from preparing, at least for a little while. She and Hank had gone to the Sunday flea market looking for party hats and wine glasses. They had asked every guest to wear a hat to the party. An interesting hat. A fun hat. A hat with a story, perhaps? This meant they needed hats of their own. And maybe a few spare ones to foist upon the party poopers who arrived hatless.

Of course, Lenore never wore hats and owned only one, a floppily wide-brimmed straw number that she had purchased in preparation for her and Hank's trip to Death Valley two years ago. Had she worn it then? While crossing the sand dunes? Or trudging through the winding, twisty gullies? She could no longer remember. She supposed she could wear it to the party and tell her story about going to see Marta Beckett at the Opera House in Death Valley Junction. But yesterday she had felt like searching for something new, something wilder, something funny, something more offbeat, something that would bring out a completely different side of her personality. Some previously unknown side. A surprise even to herself.

The snug fitting, feather covered vintage hat – she didn't know the name of the style (it wasn't a pillbox, was more rounded and fitted to her skull) was a flurry of irridescent coppery-orange, kelly green, brown, black and white feathers. Hank said he thought they might be from a hen. Should she wear a hen hat? What might that coax out of her? What kind of a cluck or baak baak baak? What egg? What birth?

To Talk or Not to Talk: That is the Question

I quite enjoyed this American Life show.

There are some sad parts, I'll grant you that, but overall it's worth it because it really gets you thinking and feeling about things that are worth thinking and feeling about.

My Christmas Gift

Yesterday I sent this information to my friend Ms. K, via email:

Interface dermatitis with cytotoxicity consistent with cytotoxic drug eruption. Erythema multiforme-like drug eruptions or post-viral erythema multiforme. . . Furthermore, a mild perivascular dermal lymphoneutrophilic infiltrate is also seen with a focus of interstitial mononuclear cell infiltrate with occasional neutrophils. . . . A focal dermal hypersensitivity reaction to an endogynous antigen, such as a persistent arthropod bite response, cannot be entirely excluded.

"Holy fucking mother of jesus cow! You mean that doctor was wrong? The one I liked who was so confident?" screamed Ms. K from her fifteen story apartment in Brooklyn.

I wrote back to confirm. The skin biopsies, all three of them -- one from my armpit, one from my chest, and one from my back -- all came back with that long garbled explanation, which was frequently punctuated with the words "benign" and "No malignancy represented."

It's a reaction to a drug or a supplement or an infusion. I don't know which one(s), and right now I don't care, because it's Christmas Eve and the redness is slowly fading and is not cancer.

I still have rising tumor markers, I still have metastatic breast cancer, but I don't have cancer in my skin.

This was a big learning experience for me. Again. I will explain why I feel this way, in a later post. But right now, I must do a few things in preparation for our Christmas Eve guests.

In two hours Blake and Emerald, Jack's children, are coming over for dinner. (My Will just flew into Chicago from Paris. He's hoping to get to SF in early January. Fingers crossed.) We're having crab cakes, salad, a mixed squash stir fry with carrots and onions, and pumpkin and apple pies with ice cream. And white wine. And if anyone wants fancy coffee afterward, I have my nifty milk frother.

Last but not least, I found out yesterday that I have the same birthday as Chevy Chase.

Twenty Questions about Cancer and/or Not About Cancer, Twice

1. Which is the lesser of three potentially life-saving or prolonging evils, Faslodex, Tamoxifen, or Raloxifene?
2. Why does the Great Mystery make it so hard to get Phoenix Tears oil?
3. Why can't the FDA go ahead and approve injectable artesunate and seventeen hundred other viable alternative cancer treatments?
4. How come more people don't know about the way the FDA systematically went about destroying ozone treatment therapies all across the United States, where they were being effectively used to treat 114 different ailments and diseases? This happened when the AMA powers decided that only DRUGS should be approved as viable treatments.
5. Why can't I figure out how to turn off the email notice alarm on my smart phone?
6. Why doesn't the Good Life Grocery in my neighborhood carry quark or goat kefir or raw milk?
7. Why was that fairly recent album of Bob Dylan's so awful? What has happened to his genius and his voice?
8. Where is my cancer hiding?
9. Why didn't I help my baby brother more and better, when he was dying of AIDS?
10. Why didn't I realize that my cat was yowling all the time because I simply wasn't feeding her enough?
11. How did I get so lucky re: finding Jack?
12. Does castor oil really work for hemorrhoids?
13. Will I live to be at least 80?
14. Why didn't I say 100, in question number 13? Why don't I think bigger?
15. What is Karen Hildebrand doing right this very minute? (9:48 a.m. Pacific Time)
16. Will I ever be able to track down that cordyceps mushroom powder soak treatment for cancer patients?
17. Should I start asking for donations to help me pay for my mounting infusion costs?
18. How can we make our Sleep Number bed softer? Why isn't it working right?
19. Should I be out there walking more than I am, despite my rib shit?
20. Could I be a whole lot closer to dying than I think I am? Is it really going to surprise me by coming way faster than I want to believe?

1. Do I need a PET scan now, to figure out what's wrong with my still fucked up left side?
2. Would a rain walk in the Embarcadero area do our spirits good?
3. Should I do a last minute attempt to send photo gifts to Efrem, Cowan, Renneker, friends?
4. Is one cup of coffee per day really all that bad for cancer?
5. Does Whole Earth Foods carry quark and would it be worth the trip if they do?
6. Will Obama be elected for a second term?
7. Why was Larry King so successful, given what a boring, dull-assed interviewer he was?
8. Should I clean out the refrigerator today?
9. Should I get in the sauna today...or try starting up my dates with Juan Valdez again even though my hurting back and sides make this a daunting task?
10. Should I do more research on ozone treatments today?
11. Should I finish the Craig's List postings that I should have finished two weeks ago?
12. What is my blind spot when it comes to my own writing?
13. What should my main writing project be?
14. Am I already over Swiffers? If so, why?
15. Could it be that I have some sort of infection that nobody is thinking of checking for?
16. Why have I gained weight when I haven't been eating more?
17. Will the skin test results be back by this coming Wednesday, given that it's the holidays?
18. Should we spend the money to have Olivia's DNA tested in order to find out what mix of breeds she is?
19. Wouldn't I really love to do number 18?
20. Do cancer cells really listen to you when you try to talk to them telepathically?

 

 

Oxidative Therapies

Perhaps, in my last post, you noticed the sentence that Dr. X wrote, in which he mentioned that artemisinin (artesunate) is an "oxidative therapy." Or more likely, you didn't notice but just sort of passed over it without really thinking about what that meant.

I've been reading (like a fiend) about ozone/oxidative therapies, the last few days. That's one thing I can do that isn't hindered by my rib ailments: Read. Research. Write.

Here is a great website. It looks hokey but is filled with a ton of information on this subject. They have reprinted numerous well-written articles about ozone/oxidation therapies, aimed at both lay people and practioners (those who are brave enough to offer the therapies despite the fact that they have to be very careful to stay under the FDA's radar, lest they get harrassed or...worse. Right now it is legal to do ozone therapies in 14 states only, even though in a huge number of other countries, these therapies are perfectly legal and have been used for over a hundred years.

I also have an e-book, The Story of Ozone, that was sent to me by one Dr. Saul Pressman. Just the first few pages on the history of how our AMA and FDA joined forces (in 1933, I think it was, or right around that time) in order to destroy the use of ozone therapies in the U.S. is mind-blowing. Why did they do this? Because they decided that DRUGS were the only way to go, were the way and wave of the future...and that anything else was inferior. Of course, the burgeoning pharmaceutical industry was also working toward the same end.

I just put three books on my newly created Amazon Wish List, all about this subject.

Just looked at the clock. I have to eat, take pills, get dressed and be at my next infusion appt. in 45 minutes. Oy vey.

A Day in the Life of ...a woman with recently diagnosed progression of breast cancer to her bones and skin

....goes something undramatically like this:

1. Get up, make coffee (forbidden), and get a happy little surge of excitement at the thought of trying out your new milk heater/frother.

2. Check emails. Here's an example of one of the 36 waiting to be opened at 7 a.m. It's from one of your alternative doctors, let's call him Dr. X, responding to the email you sent, asking if maybe it would help to add this particular treatment to your protocol. You mention that you heard of a woman who injects it rather than takes the oral form, but you are not sure the injectable form is FDA approved, that is, available in the U.S. (so what else is new?):

His answer:

Hi, I know a fair amount about artemisinin and have used in some in the past, can't say I saw anything impressive but the injectable form, artesunate, sounds more intriguing, especially as it's an oxidative therapy like Vit C.  If you could get the prescribing info on that (like where to get it and the dose), that sounds worth a shot.   Dr. X

3. Stop reading emails and switch to scouring the internet in search of info. on injectable artesunate. Also send an email to the one woman you sort of know (barely) -- a member of the same "breast cancer alternative treatments" discussion list as you -- who once mentioned (you think, maybe, but it's hard to remember because back then you weren't yet sitting in the "mets" seat) that she was injecting herself with artesunate. "Mets" is short, btw, for metastacized cancer cells – cancer cells that have spread from their original tumor site to other parts of the body, harum scarum.

After an hour or so of searching and after receiving a second email on this subject from Dr. X, in which he mentions a New England Journal of Medicine article written by someone who might know how to find injectable artesunate, you change the direction of your google searching, in hopes of finding a way to contact this author/doctor. The first number you find leads nowhere.

But when you dial the second number you find, you feel huge surprise when the researcher actually answers the phone himself, and talks to you for fifteen minutes about how the only way to get it is to wait for the U.S. Army to finish developing it (but only for malaria, not cancer), a project that was begun four years ago and is not yet near completion. But it doesn't really matter, says the researcher/doctor, because you should not be pursuing or researching any alternative therapies. Why would you want artesunate for cancer? But you can tell that this is a rhetorical question. He does not really want to hear your answer. You should, he insists, be pursuing only conventional, proven methods. He repeats this numerous times throughout the conversation.

Because he has been courteous and has respectfully chided you for attempting to  participate, in a way he does not approve of, in the ongoing attempt to save yourself from death by breast cancer, you remain courteous and respectful in return.

4. Get a happy little surge of excitement at the thought of maybe finding a way to add artesunate infusions to your alternative bag of tricks. Maybe it could help tip the scales toward Impressive and Unexpected Remission, NED (No Evidence of Disease). Every little bit helps, no?

5. Look at the time. Oh dear. You have a class to teach tonight, and you have not even begun to prepare. Nor have you showered, eaten, or gotten dressed. Hurry up and send accumulated medical articles and study excerpts and relevant website links to Dr. X.

6. Answer email from your four-hour a week paid "personal assistant," who will come to your house to walk your dog, pick up flyers to be distributed for your business, and empty the classroom trash on the day that you go to see the doctor in Santa Barbara. Tell her that if you forget to leave the housekey in the mailbox (oh so possible), you think she is small enough to squeeze in through the doggie door.

7. Forget to take your liposomal Vitamin C on an empty stomach, but remember to take the first 15 pancreatic enzyme capsules. The next 15 will be in four hours. Remember to reset the pill schedule alarm on your stupid smart phone. Realize that you also forgot the first round of pills with a meal, because you were too focused on reading about the woman with Stage IV breast cancer who reversed the progression of her oozing, festering tumor until it was no more, thanks to artimisinin (the source of artesunate), also known in the non-pharmaceutical world of free, unpatented herbal medicines as: Chinese Wormwood.

8. Write note to self to respond to friend who sent this email to you after reading your last blog entry about your mets:

"I want to know how to make it all go away. How do they propose to treat the subcutanous skin issue?"

9. Think about all the different ways you could respond to this question, and realize that it would all take too much time. You don't have time to explain. No, you need to make and prioritize a list of everything you need to do right now, to get yourself over the hump of the next few days of researching and decision-making. You need to wash your dishes that are piled up horribly, and walk your dog and go buy a few items to put on your empty refrigerator shelves. But no, what you need to do even more is spend a couple of hours finding and copying all the medical reports you need to take to the doctor in Santa Barbara, because (surprise surprise!) they are not nicely organized or easily findable. They must be searched for, in different piles and drawers and folders and boxes. You cannot believe that after five years of this, you have still not got it all organized and easy to refer to when needed.

10. Get in the sauna to try and sweat out some toxins and stress. Repeat to yourself ten times in a row, as you drip,

"Dear Metastacized Cancer Cells,

I appreciate all you did for me in the past, before you turned renegade. But now I must ask you to recycle. Your molecules are needed for life to continue."

You found this line in a book somewhere, and it struck you as a reasonable request.

Morning Rant Trumps State of Grace

My "state of grace" (irrational happinesss of the last couple of days) morphed this morning into a ten-minute tirade of irritable comments and complaints, directed at Jack the second he entered the kitchen and before either of us had had any coffee (his allowed, mine, as you know, forbidden).

Me: "I just feel achey all over my torso, esp. that one spasmy spot and my left rib area and now a new spot in my right armpit. Every day it's some new spot near some different rib...or even NOT near a rib, Jack! I don't understand it! It's more than achey but less than terrible pain. Is it bones? Muscles? I guess they are all attached. I don't know how to describe it, but it's not right. This is not just the normal aches and pains of being 58. Oh right, duh, I have cancer. Sorry. I woke up grumpy. I just get so mad when the first thing I notice when I wake up is some new stupid pain in some new and totally unexpected spot!"

Jack: Silence. A sleepy look on his face. He doesn't say anything because he knows that I am nowhere near done yet.

Me: "Oh, and I woke up with my favorite duo, hemorrhoids and herpes."

Jack: "Oh no."

Me: "Oh yes. And all these Advils I've been taking have messed up my, ummm, 'regularity' if you know what I mean."

Jack: "They can do that."

Me: "Yeah."

Then I feel something funny in my mouth. I run my tongue over my gums, above my top front teeth. The tip of my tongue feels something slick and mucousy, like a pea-sized blob of jelly. I stick my finger into my mouth and remove the soft blob. It is a clot of deep burgundy blood. My gums are not bleeding. I haven't been coughing. Where did it come from?

"Jack, this just came out of my mouth." I hold out my finger with the kidney bean-sized clot of blood on it.

Jack: Silence.

Me: Silence. Then I flick my finger over the kitchen sink, and the clot lands next to the drain hole, and  Jack and I stand there peering into the sink, staring at this vivid red blob which looks even redder against the white of the sink. I walk away. I wonder where it came from. I make a little circle around the kitchen and end up back at the sink. I read somewhere, just the other day, that when people are lost, say, out in the woods or in the desert, they start walking and they always end up going around in a circle. This has been studied and confirmed. Lost human beings always go in circles.

I go into the bathroom, get some toilet paper, walk back to the kitchen sink and scoop the blood clot back up onto the tissue. Jack and I stare at it some more. Then I look up, laugh (ruefully) and say, "Okay, you can go to work now. I'm just going to carry my clot around for a while. I'll take it with me to the living room."

So Jack goes off to work, and I take my clot into the living room and place it, still on the piece of tissue, inside the shallow china dessert bowl on the coffee table, where I keep my foam rubber earplugs, which are there because I have been sleeping on the sofa for the last few days because the sofa is softer than the bed, and therefore easier on my tender and unpredictable rib cage.

I wonder if I should carry my clot with me to my infusion appointment this morning and show it to Dr. C. I wish I didn't have to go to the infusion. It takes up almost three hours of precious morning work time, when I am freshest and get a lot more accomplished than I do in the afternoons.

Oh, yes, almost forgot: I also kvetched to Jack, before discovering my mystery clot, about how stressed out it makes me to have to sit there in the infusion room with an IV in my arm while my Writing Salon work load piles up.

I look at the image in my brain. It's a scale, the kind with two containers hanging from chains, one on each side of the main part of the scale.

In the lefthand container, all jumbled together, is: my blood clot, a yellow tube of Neosporin for dabbing onto the three biopsy holes from yesterday (each one held together with a small stitch), a few unanswered-as-yet emails pertaining to miscellaneous, annoying Writing Salon administrative tasks, a bedroom that looks like a cyclone struck it, a dirty kitchen, a dirty but darling dog, and one hemorrhoid. 

In the righthand container, all by itself, is: the threat of a death that may come way too soon, too painfully, and too fraught with all sorts of scary unknowns that will lead up to it (such as weird blood-jelly clots in my mouth before I've even had my coffee or a chance to finish the rant that wasn't even going to include a clot).

I am perfectly aware that the righthand container is almost touching the tabletop, whereas the lefthand container is a foot away from it. I get it. I get that all my assorted complaints weigh almost nothing in comparison to the Big Old Fat Disease/Death Combo.

I totally get it. It's like, a tornado is spinning toward my house, it's only a few blocks away, all the neighbors are screaming, "Get in your car and run! Run! As fast as you can. Go north! Hurry!"

And I am sitting on the couch saying, "Just a few more minutes! This episode of The Walking Dead is almost over. They've escaped from the Center for Disease Control. Only one person from the group got killed, the woman who chose to stay behind and get blown up. But there's something up ahead of them, way down near that bridge off in the distance! . .  "

Are any of these metaphors making any sense to anybody but me? Probably not. So I'm going to stop now and go take my first 15 pancreatic enzyme pills of the day. Then post a bunch of Writing class descriptions to Craig's List. It's one of the most tedious and time-consuming parts of running the WS.  Or maybe I won't do that. Who needs to do marketing and PR? Let the classes just magically fill themselves.

Maybe, instead, I will do some more research on artesunate for fighting cancer. Or better yet, I'll research the mushroom powder bath, available only in Japan, that Oncologist #2 mentioned to me on Wednesday. She has no time to do this sort of research herself, because even though she thinks it sounds amazing and promising (her sister's boyfriend invested in the company, and her sister is the one who told her about it), she is locked into her world of conventional oncology. All she can do is mention it to me, tell me to call her after I've made a decision about Tamoxifen versus Faslodex versus Evista, give me a hug, and move on to her next patient.

Eeensy Installment (Disguised as Really Long Installment)

Above: Restaurant next door to gas station. Sadly, I had just taken a bunch of pills that had to be taken on an empty stomach. However, I was later cheered up when we passed by Underwood Road! I think it might be the only one in the world.

***

Yesterday Jack and I got up at 6 a.m. and left at 7 a.m. to drive to Santa Barbara for a 2:30 appt. with a different oncologist, one who has more of an "out of the box" viewpoint when it comes to the issue of whether or not women with breast cancer can continue to use hormone replacement therapy. BTW, I am eating Barbara' Original cheesepuffs as I write this. Very good for all types of cancer.

As you know from what I've been saying for the last five years, I believe that this issue is much more complex than women have been led to believe. We are told that if we have estrogen receptor "positive" breast cancer, then we must do whatever we have to do to eradicate estrogen from our bodies, because our breast cancer will "feed" off of the estrogen and therefore grow in leaps and bounds.

Bottom line, in my opinion: This is a gross simplification and leads to a lot of confusion..and the prevailing myth that estrogen CAUSES breast cancer.

The oncologist I saw here in SF last Friday recommended I start taking a drug called Faslodex. Its mechanism is to annihilate (his word) one of the four main estrogen receptors, thus preventing the renegade, estrogen-loving cancer cells from having this particular receptor to attach to. Don't ask me why it's only this one receptor out of the four. As I said, it's complicated, and I don't have time to try and explain what I have been trying to understand for the last five years, and still only partially understand (but at least I understand it better than 90 to 95 percent of the women in the world, and at least I haven't given up trying to understand).

This doc, let's call him Dr. #1, said I could continue to take hormone replacement therapy while taking Faslodex. What? How can that be? Wouldn't doing one thing (taking Faslodex to annihilate estrogen receptors) negate the other (taking supplemental estrogen to make sure your body still has estrogen)?

Like I said, it's not a simple subject. IT'S COMPLICATED.

So...what will happen to me if I take this drug ? Would it help turn my rising cancer markers around? If so, how and why? If so, what will I feel like physically?  Will I or won't I have side effects? What kind of side effects? How bad and for how long? Major or minor? Will they be merely a "discomfort" or a "bother" or "icky but not insurmountable" or "pretty damn bad but better than being dead" or "so bad that you wonder if you really want to be alive if this is what your life is going to be like"? Are we talking nausea, bone deep fatigue that never goes away, insomnia, joint aches and pains that feel like arthritis, non-stop round-the-clock hot flashes, night sweats? Or are we talking a little bit of tiredness, occasional hot flashes, and a bit of vaginal dryness?

How important is quality of life? Is life worth living at any cost? Some people say yes, of course. Others say no way Jose.

Dr. #1 spent two hours with me and Jack. Impressive. We discussed other drugs as well, such as tamoxifen, which I refused to take five years ago because of all its toxic side effects and because I believed I had other, better options at that time.

(Historical Aside: When I refused it five years ago, I did so because this very same Dr. #1 refused to listen to me when I told him I'd read a recent study that said it was possible to take tamoxifen and HRT simultaneously, and get just as good, if not better, results. Sound weird? Yep. But IT'S COMPLICATED, remember? 

In any case, he flat out refused to consider it, and basically said I had to do it his way or he wouldn't take me on as a patient. So I left his office and never went back. Well, I recently heard through my medical grapevine that this doc had "changed," for the better (was more open-minded and less conventional now) which is why I went back to him last week. Turns out he NOW agrees that it's possible to take HRT and hormone blocking drugs simultaneously. We all have to move at the pace we move at. Sometimes doctors have to move slower than we'd like them to, for all sorts of reasons. Another blog post. Anyway, I forgive him. :-)

Dr. #1 didn't push tamoxifen this time around, maybe because he figured Faslodex would be just as good or better. They are both designed to block estrogen or estrogen receptors. There are subtle difference in their mechanisms of actions, but the end results are similar.  

The thing is, these hormone "antagonist" drugs (tamoxifen, faslodex, arimidex, raloxifene,etc.) work for a while, for a lot of women (if the bad side effects don't cause the women to refuse to take them anymore). But then they stop working, and you have to switch to a different one. At some point none of them work any more, and because the root cause of your breast cancer has never been understood or treated, you die after five or ten years.

Ten years is considered great, a real success, by the doctors and pharmaceutical industry, but by the women I would say "not so much." All those pink ribbons and tee shirts and other silly pink paraphernalia, and all they can offer us is five or ten years maybe? Yes, the emperor's new clothes are so very lovely, are they not? Why just look at his lush ermine robe and solid gold, jewel-encrusted crown! Oooh! Aaaah! Ignore that little silly little boy in the crowd tugging at his mommy's dress and saying, "Look Mommy, the emperor has NO clothes!" 

In any case, let me conclude this short 25-word post by saying that Jack and I went to Santa Barbara yesterday eager to see what Dr. #2 would say. Would it be identical to what Dr. #1 said? Would #2 concur re: the diagnosis? And re: the best treatment? What if they did not concur? Then what?

Hint: They did not entirely concur, nor did they entirely not concur.

We didn't get home until almost midnight. I had to wind down, so didn't fall asleep until 1 a.m. and was up at around 7 a.m. I missed a day of work, and there is a backlogged "to do" list waiting for me. Even so, I probably will miss most of today's work day, too, because I am taking time to blog, and because I must make time to go back through all my notes from these two doctors, compare them, rewrite them, and try to make sense of them so that I can next discuss them with Dr. Cowan (#3) and Dr. Renneker (#4), over the next few days.

I also have to go get a prescription filled at Walgreen's, and order some supplements online that I really need and have run out of. I also need to go take a bunch of pills that I should have taken several hours ago but I forgot because I was going through yesterday's hundred or so piled up emails. I also need to eat breakfast, though it's now almost 1 p.m. Also need to walk Olivia before it gets dark.

I also have to wait a week for another test result from a test that I had, unexpectedly, yesterday in Santa Barbara. A skin biopsy, taken from three spots: armpit, chest and back. They call it a "punch biopsy."

So... doctors Cowan and Renneker, after hearing what doctors #1 and #2 said (and after seeing this newest test result) will give me THEIR opinions and recommendations. Some will overlap/be the same, others will be in conflict, for sure. There is no way around that.

The final decision will have to be mine. It's my part-time, swing-shift job to create a "team" of doctors for myself (or periodically re-create a team that is no longer working well enough). The doctors must not be peas out of the same pod.

I oversee my team, assess their recommendations, and come up with the next "phase" or "stage" of my lifelong treatment plan, based on what I know to be true FOR ME and how I have chosen to perceive, interact with, and learn from this disease.

I see this experience as part and parcel of my highly personal process of moving minute by minute, hour by hour, day by day through the Great Mystery. A series of millions of tiny steps punctuated by a few great leaps and bounds when you learn/glean/absorb/take in and give out stuff that transports you into realms of being that you never imagined or knew were possible. It is a spiritual process, which is what I believe life is no matter how good the cheesepuffs are.

Santa Barbara Road trip pics:

Geese on their way to San Jose. Don't ask me why:

Turning corner, on way to rest room pit stop at Scramblz:

Scramblz:

Jack's Scramblz rest room door (mine had a giant Betty Boop!):

My chauffeur:

Southern CA winter weather:

More winter scenery:

A Fact: Many retired couples become truck drivers and share one job. They live in the trucks. There is currently a shortage of truck drivers in the United States. I am really curious re: what their truck digs look like. Are they just loft beds, or is there more room in there than you think? A tiny kitchen? A bathroom? A TV? Internet now? Or still just CB radios? And are they allowed to have any pets?

 

 

 

The Truth Is...

The truth is, there is just no way for me to digest or believe that I have breast cancer that has progressed to my skin and bones, and that continues to progress. The red skin of my armpit, and the pale pink mottled skin over my mastectomy scar are not that scary looking. You would never think that those pink areas were cancer.

I try to be humble, to accept that I am no different from any other human being, and that this is the luck of the draw. I try to tread the fine line between believing in miracles -- inexplicable recoveries, remissions, reversals of deadly diseases -- and believing in the simple reality that death happens to us all. But I am not sure I am capable of truly taking it in. I think maybe I am starting to understand how a person can be running around to Walgreen's and the dry cleaners on Tuesday, and then lay down on the couch in front of a Law & Order rerun on Wednesday... and quietly die during a commercial for Boniva.

The last few days, since finding out this new and what should be devastating information, I have been irrationally happy, or much closer to happy than I ever would have thought possible given the circumstances. After Jack and I left the oncologist's office last Friday, I oohed and ahhed at the Embarcadero night lights. We were moving very slowly, caught in rush hour traffic, so I took out my camera and was snapping shots out the window as the South Beach pretty people gathered at chic coffeehouses and spilled out onto the wet, Christmas-lit sidewalks.

It makes me wonder if I am in some typical form of denial, some unconscious inability to come to grips with the grim truth. It's like my brain has lifted its hands up to cover my ears and is saying FOR me, "La la la la la la la!" as loudly as it can, to keep me from hearing thoughts such as, "You could be dead in a couple of years, Jane, or if not a couple, five. You could die younger than your mother did, and you thought that her dying at 66 was tragically young. Plus, you are very possibly about to start taking some awful new drug ((Faslodex) that could make your life total hell, just like the Arimidex did."

What the hell! It's not like me to be this chipper, good humored, positive. I should be wanting to kick the cat when she yowls, I should be snapping at Jack, I should be panicking like a motherfucker. I'm a fear-based personality, more a pessimist than an optimist. I know this all sucks big time, but here I am talking cheerily to the dog and the cat and even to Jack. Here I am working on photos, doing lesson plans, ordering a milk steamer from Amazon even though I know it's a frivolous indulgence and that I should be saving every penny right now for upcoming infusion costs. Here I am thinking, "Thank you, thank you oh Great Mystery, for everything that you have given me, especially all the kindness that has come to me when I have least expected it. Seriously. Thank you."

Almost Six Weeks Since My Last Post, and...

...it feels like a lifetime.

Here's where I am at now, and I am going to keep it short. Every day or two, a SHORT post. Otherwise, I can't do it. You will have to keep coming back, to be caught up in eensy beensy increments that may be given in non-chronological order. No promises of a nice and tidy blog.

So.

1. Two or three months ago I fractured a rib. No idea how. Danger signal. Possible bone mets (breast cancer cells growing in bones, weakening them, making them prone to break at the least provocation). Hoped against hope that it was just a coincidence, a fluke fracture unrelated to cancer. Went to see a great osteopath, Dr. Dan Shadoan. Rib slowly healed.

That's all for today. I will also post a "Sunday Morning at Dawn" photo here AND a different photo on my other, official photo blog.

I lied. I am posting two photos here. This one I took while sitting in the Mt. Zion Hospital waiting room, waiting to have x-rays of my spine, ribs and chest. I was wearing my black coat over gigantic hospital pajamas, because I had just finished having an MRI on the first floor, and it seemed stupid to me to get all dressed again in order to go up to the x-ray department on the second floor. X-rays are drop-in, so I figured if I hurried as fast as I could, maybe I would make it back to my car without getting a ticket. I was in one of those residential two-hour limit spots, because I hate parking in parking lots. The machines make me nervous, for one thing.

Therefore, although the nurse raised her eyebrows and said, "Sure, but you'll have to go out in the hallways and up in the elevator," I darted out of the MRI waiting room, out into the hallways in my huge coat-covered PJs, clothes bundled in my arms, and went to X-ray. When I walked in there, the woman behind the counter said, "Ah, you must be the woman who just had an MRI." We smiled at one another. "Yep, that would be me."

I had to wait about ten minutes, not bad. While waiting I managed to get some kind of cool abstract shadow/light shots, this being one of them:

Dear HealthNet

Dear HealthNet,

Just wanted you to know that I received your letter today, letting me know that due to your rising costs/dwindling profit margin, you are again raising my monthly premium, which covers only me, from $750/month to $880/month with a $2000 deductible.

It would be really nice if you would pay for my Vitamin C infusions or some of my supplements or hormones, but I understand that you have priorities, and I am not one of them. I'm nothing but a drain on your resources, a real pain in the neck, what with my having breast cancer and all.

But at least my desire to do non-toxic treatments that actually work, or at least might work... as opposed to treatments that have been proven NOT to work (take Avastin, for example, or chemo or radiation), lessens your financial burden, since you pay for none of those. I mean, it's great that you paid for my surgeries and MRIs and Pet Scans and ultrasounds, but I've done my best to see to it that pretty much all my other treatments I want are ones that you don't cover, even though they cost much less than the conventional treatments.

Life is so funny, isn't it? Kinda wacky and hard to figure out.

I apologize for any inconvenience that my breast cancer may have caused you over the last five years, and I can see why you felt you had no choice but to continue to raise my premium, which was $320/month in July of 2005. 

I'm starting to think about "downgrading," but that's going to require some real number-crunching and reading of fine print, because what if I make such a change, thinking I'd actually (bizarrely) STILL be better off paying for any surgeries and MRIs and Pet Scans and ultrasounds, etc. on my own...only to discover that the plan I've downgraded to doesn't provide something that I didn't realize it didn't provide, because the print was sooooooooooo very tiny, I missed it! Even with my trifocals on PLUS a magnifying glass! 

So anyway, thanks so much for your promptness and efficiency when it comes to raising premiums. One suggestion: Maybe you could apply that same promptness and efficiency to my reimbursement requests, which usually get lost, requiring me to resubmit them all over again. Or maybe you could apply it to things like, oh, NOT changing your codes so often, which tends to confuse both me AND my alternative doctors, who have a tough time keeping it straight. They use the codes they think are right, we submit the bills to you (the tiny percentage of the ones that you might pay SOMETHING on, even though we know it's a longshot to try), and after weeks or months, you finally reply only to say that the claim was denied because we didn't use the right codes. So we call you up, wait on voice mail, get transferred all over the place, disconnected, etc. until finally we get to a real person who tells us that the codes were changed.

Stuff like that. I'm sure you know what I'm talking about. So many details to remember, huh? I know, I know. I hear ya. It's not easy running a business. I know! I run one too!

Speaking of which, I must get back to work now. Gotta figure out what I can do to pay that extra $130/month.

Thanks again for letting me know.

All the Best,

Jane

Warning: This Post is Rated PG. I'm Back to Phooey! and Darn It! for Now

Before my update, I just want to announce that my best healing treatment thus far for today was an email from Will, my dear boy, who wanted me to know that he and his hand-to-hand partner, Heloise, just finished competing in a big circus arts festival in Paris...or maybe it was Berlin. I forget. Anyway, THEY WON THE GOLD MEDAL and THE "PUBLIC PRIZE." And a tidy sum of prize money to go along with the medals.

I am SO proud of him. He peppered his email to me, btw, with a huge number of offensive swear words, remarkably similar to the ones that peppered my recent rant post. For example, his first line was: "

Mama!

We won the mother fucking goddammed gold medal!

He was teasing me, of course. It worked. I laughed all the way through the obscenities.

Moving on:

Here's my Cliff Notes Breast Cancer "Technical" Update:

1. A couple of weeks ago I finished my twice a week high dose Vit. C infusions (12 total, at a cost of around $3500 out of pocket), and the next morning raced to the blood lab to get tests (comprehensive metabolic panel, CBC/platelets, natural killer cells, lymphocytes)  to see if my tumor marker numbers had gone down down and/or my immune response had improved.

2. The tumor marker results were: CA15-3 went up from 93 to 116 (normal range is less than 32), the CEA went up from 7.2 to 17.2 (normal is less than 2.5), and the CTC went down from 46 to 40.

3. My overall immune response improved, ie. absolute lymphcytes went from 821 to 1669. Also, my "albumin" number was good, which Doc Renneker said was a sign of good health. Who knew?

4. Renneker also said that the rise from 93 to 116 wasn't that big a deal, in the sense that just time of day can affect numbers by 10 to 20 percent. Which isn't to say that ANY rise (or lack of a decrease) is good. But at least the rise wasn't hugely significant.

4. Both Renneker and Cowan said that the biggest concern is the leap of the CEA markers from 7.2. to 17.2. CEA markers can indicate any number of possible cancers, from breast to colon to GI to pancreatic to ovarian. But both R. and C. basically just said they didn't think I have any of those; I just have metastatic breast cancer that is very small (micrometastic tumors floating around "somewhere" - at least I hope they're only floating, which is better than attaching and growing). My wording here may be all wrong, but these are Cliff Notes, and I am rushing.

5. The one thing Renneker said that was different from what Cowan said was that in 15 to 20 percent of breast cancers, the breast cancer cells have a "neuro-endocrine component" that can cause "carcinoid tumors" in the GI tract, which could cause a rise in CEA numbers. I started to freak out when he said that, but then he explained that, in fact, carcinoid tumors of the GI tract are not that bad. He said people can live with them, feeling nothing, for 30 or 40 years. They may only be discovered after death. Who knew? And the treatment for them, if you do have them, is entirely different than treatment for breast cancer. A whole different  and non-toxic protocol that involves, for example, one shot a month of something called Sematostat. I haven't looked that up yet. No time.

Both docs also said I need to take the freaking blood tests over again, because no one told me that I shouldn't have had my blood drawn until at least 24 hours after my final high dose Vit. C infusion. This didn't occur to me because I had been told that Vit. C is water soluble and thus the blood plasma levels go down really fast. But for some reason, said the docs, this still could have somewhat skewed at least some of the test numbers (probably not the markers, but some of the other parts of the metabolic panel, It might explain why my "eosinophils" skyrocketed from 112 to 1161. Usually, it seems, eosinophils rise because of parasites, allergies, bacterial infections or viral infections. I had none of those. So...it might have been the Vit. C.

And Renneker suggested I add in two more blood tests that measure two more "neuro-endocrine" markers. If those numbers come back high, it would be a red flag for the GI tract carcinoid tumors, something that, he noted, hardly any conventional BC docs pay any attention to, but HE does. He is actually following 10 women with breast cancer who have high neuro-endocrine markers. Granted, it's unlikely I have carcinoid tumors of the GI tract, but why not take the tests and see? (Well, the health insurance company may not see it that way, since they don't acknowledge any connection between these markers and breast cancer, of course. But all I can do is try. What if I AM one of the 10 to 15 percent who have them? That could be the reason my CEA has risen.)

Cowan, on the other hand, thinks that the likelihood of my having carcinoid tumors is almost nil, BUT he was willing to write an order for the two tests anyway, because I insisted. He said, "It will just distract us." I said, "No it won't. It will just give us extra information that can't hurt and might help."

6. Even though my markers didn't drop dramatically or even AT ALL (except for the CTC, slightly), Cowan wants me to continue with Vit. C because: a) You need to do for longer than just six weeks, as is often the case with alternative therapies -- they don't work FAST, the way chemo does, say, or radiation. But fast doesn't necessarily mean permanently. Fast results can be very temporary. Then the problem (the cancer) just comes back, sometimes with even more vengeance.

I said, "I can't afford to continue to pay $1600 a month." He said, "We'll see what we can do to lower the price. Let me crunch some numbers." So I'm waiting to see what those numbers $$$ will be.

He also wants me to start taking mistletoe (Iscador) again. Three shots a week, which I can give to myself. I know how to do this. I did it for two years, back in the beginning. He's changing the kind, though, that I'll be using now.

Then he tweaked my supplements and we agreed that I would continue with the pancreatic enzyme and liver detox protocol (liver detox = coffee enemas; please don't think that's some quackery thing. Look it up on the Internet. It's a valid method of liver detoxification, which is a really really important way to rid the body of toxins that build up even faster when you are doing all these treatments. Liver detox also helps your body get rid of excess ESTROGENS, which is especially important if you have hormone positive breast cancer. I'm not trying to eradicate my estrogen, but I AM trying to keep it from "dominating" over my other hormones. I'm aiming for moderation and balance. A healthy liver can help me with that aim.

So.....that's where I'm at right now. I literally just got back from my appt. with Cowan, which is five days after my consultation with Renneker.

Oh, and BOTH of them grilled me about how I FELT. I told them both that I feel really GOOD. Better than I have in a long time, despite the higher tumor markers. Cowan commented on how I LOOKED better, too, than I did three months ago. I have more energy, my cheeks are rosier, I'm sleeping better. (I attribute this mostly to the liver detox, because as soon as I started doing it, I IMMEDIATELY felt way way better and had a lot more energy.)

Apparently, even when you have cancer, something as simple and unscientific as the answer of "great!" to the question "how do you feel?" is a good thing. It counts for something, when assessing the disease. It also counts for "quality of life."

Good thing, because I need lots of energy to keep earning  more money to pay for treatments that give me more energy (and hopefully are fighting the cancer, too, slowly but surely). I have not even come CLOSE to giving up in any way, shape or form.

End of a Long Day so Cliff Notes It Is

Continuation from May 18th post:

1. Consulted with Dr. Renneker last week

2. Saw Dr. Cowan today

3. More blood work tomorrow to check out liver and other cancer'ish things

4. Also tomorrow: Ultrasounds of my left "axillary" (armpit on the side where there was cancer, to see if any more lymph nodes are lighting up) and of my abdomen, to see if there are any large tumors that have suddenly developed (highly unlikely) in my liver or anywhere else in that vicinity. These are simple tests, no radiation.

5. Wait for results. Decide if I think it is or is not worthwhile to do a diagnostic CT scan in order to search for tiny cancer that the ultrasound couldn't possibly have found. But if you already know that you need to ramp up your protocol, no matter what (that is, no matter if something suspicious shows up ...or not...), then why risk having that Hiroshima'ish amount of radiation that can CAUSE more cancer or promote any cancer that might already be there?

6. Whatever the results are, I'll be ramping up my "protocol" to try and figure out what will make the tumor markers go down. Nobody knows what will work. There are various options in both the alternative and conventional fields. Typically, no matter what your protocol is, you do it for a short period of time (ie. six weeks), then have the tumor marker tests done again. If they are going down, you stick with that protocol. If they are not going down or are going up, you stop that protocol and switch to something else. You keep testing and switching until you either get better or you die. That last part is the simple part.

7. One thing Cowan thinks I should do is intravenous high dose Vitamin C, which would entail three three-hour infusions per week for six weeks. Not covered by insurance, of course. And might require traveling to Mill Valley. So let's say four hours per time. Twelve hours a week. Six weeks.

7. That is but one option out of many. I don't know if Renneker will agree that it's a good one to start with. I don't even know if it's the one I think would be the best to do first.

8. But it's 9:45 p.m. and I am tired of thinking about it. And I have to get up early to go to UCSF on Parnassus. Must be there by 8 a.m. Must not eat or drink anything for at least six hours prior. I wrote a big note to myself already and put it on the kitchen counter next to the coffeemaker: "Do not eat or drink!"

9. Another day has gone by when I should have been working at my JOB but only was able to put in about one quarter of the time I should have. It's frustrating. I need to earn money to pay for whatever protocol is around the corner. Ka-ching ka-ching ka-ching.

10. I am not depressed or panicked, and I am not jumping up and down for joy, either. That whole "one step at a time" thing is a good idea. My next step is to stop blogging and  work on a photo for 15 or 20 minutes. That's one of my favorite methods for getting out of worry/fear mode and into "be here now" mode. 

That's all folks. Not a beautifully worded post. Just the bare bones.

May 18th, 2010 Nutshell Update (cool title, huh?)

1.Two and half weeks ago I got a little ache in my right side. Liver area.

2. Two weeks ago I mentioned the ache to Efrem, my acupuncturist Chinese herbalist. He stuck a needle there.

3. The ache got worse, and six days later I got sick. Abdominal pain/aches, liver area sorer. I felt tired, weak, didn't want to move or eat or walk Olivia anywhere at all.

4. Felt better after a couple of days of misery. Got my appetite back, abdominal soreness slowly went away. But liver area stayed sore.

5. Called Dr. Cowan's office and made an appointment for May 25th after looking up "liver pain" on the Internet.

6. Yesterday went back to see Efrem again, updated him. He confirmed that liver was inflamed, stuck more needles in me, came back at the end of my hour and said: 1) I should have it checked out by a regular doctor, and 2) One possible cause could be the acyclovir that I have been taking for three months non-stop because of the shingles that won't entirely go away. One side-effect of acyclovir can be hepatitis. My eyes widened.

7. Efrem told me to stop the acyclovir. My eyes widened even more.

8. I said, "What if my shingles come back because I stopped it? I'm terrified of getting shingles again, full force."

9. He said, "We'll deal with that if it happens. But I think you need to stop the acyclovir. Increase your lysine." He gave me a dropper bottle of herbal stuff, and some herbal capsules for the liver. As I was standing at the counter paying for the visit, he walked by me, on his way out the door for lunch. He put his hand on my shoulder and said, "Don't worry. You will be okay."

10. I went home and there was an email from Dr. Cowan (to whom I had sent an email prior to making my May 25th appointment with him, summarizing my symptoms). He said "we need to do lab work and really check this out." I wrote back and asked him about stopping acyclovir. He concurred with Efrem that stopping the acyclovir wouldn't be a bad idea.

11. Next I got a fax from the breast surgeons office, containing the results of my last three tumor marker tests. My heart started to pound, I began to shake all over... before I even looked at the results. Finally, still pounding and shaking, I gripped the paper in both hands, glanced at the results and knew right away that they were way too high.

12. Then I thought, I need to compare them to the last tests, to see if they have gone up, stayed the same, or gone down. Maybe they've gone down a tiny bit? It's the trend that's important, right?  Clinging to that thought. I ran to my desk but, after frantically searching for a minute or two, couldn't find the last test results. I pawed  crazily through stacks of medical papers and folders, furious that I had not been prepared, did not already have this information at the very top of the pile, at my fingertips. I couldn't believe I couldn't find it. Jack was standing nearby, helplessly watching me storming around, cursing because I couldn't find the earlier test results. But we both already knew that finding them wasn't going to make that much difference.

All three test results are still significantly elevated. The hope that I've had for the last three months was that, after the mastectomy, the markers would miraculously, wonderfully drop back down to normal. The fact that they are still elevated almost certainly means that the cancer has  metasticized to "a distant place," but no one yet knows where that place is. My guess is that this will mean more Big Tests, such as CT Scan and bone scans.

13. This Thursday, day after tomorrow, I have a phone consultation already scheduled with Doc Renneker, during which he will lay it all out for me, no holds barred: what this means, what my options are, etc. I'm used to this scenario by now, and I am grateful that I have Renneker, who helps me keep the panic at bay.

14. I am also grateful that I have Efrem and Dr. Cowan. And of course Jack. That goes without saying.

15. My liver area still hurts today, but I know I need to give it more time to recover. I hope it was the acyclovir, but I also know that it could be due to something else, something worse. But why focus on that? Why not do my damndest to keep the following frame of mind:  I will wait and see. I will not speculate. I will not attempt to imagine seventeen different possible scenarios. I will just stay here in the moment. I will finish this post, and then I will do the normal, simple, usual things that I do every day, including writing a non-cancer post, if I can muster the energy/make the time, in my other blog, My.Third.Eye.