Liquid Sunshine

I finally talked to my oncologist Dr T on the phone yesterday. (He is usually very good about getting back to me--  this two-month delay is highly unusual and was due, I think, to three things:  1) He needed to look at the research. 2) He was visiting a daughter abroad for the holidays. 3) He is getting ready to retire in Feb.  I know-- sad news for me, because he has been such a patient, reliable, reasonable guy to work with.  Now I have to break in a brand new doctor!)

He read the journal reports on IV high-dose vitamin C (or as he consistently referred to it, ascorbic acid) and sees that they are promising.  But these studies do not constitute clinical evidence, so he cannot recommend the use of ascorbic acid as a treatment for breast cancer at this point in time.  He feels he does not have enough evidence to make a call in favor or against it.

Not a big surprise.  It was a very civil discussion.  And he does NOT object to having the Celilo Infusion Center leave my IV line intact after my monthly Zometa infusions so that I can go somewhere else that same day and receive an infusion of vitamin C!  Dr T will write up an order indicating the same.  So that is good news.

I meet with Joan Laurance, a local naturopath, who believes she can help with the infusions once she gets the protocol information from Dr. Standish at Bastyr.  So.  Onward!  This may not happen til Feb, but I think its gonna happen.

"On The Withered Tree, a Flower Blooms"

I got that from Joko Beck's Everyday Zen (p.35), quoting the Shoyo Roku.

I want to address how sheepish, how oddly exposed, I have felt at the possibility that it might even be construed  that I have laid any claim to being "awake" in my last post...  And to clarify what I mean by the same.

I recognize that, at least in someone the likes of myself, this is not a permanent, on-going state of no-mind.  I am no enlightened master.  I have just had the experience of waking up.  I nod off.  I wake up again.  Life goes on.  Maybe the difference is I am more aware of how precious it is to be awake?  And how possible it is to change one's mind- snap! - in an instant-- from one state to another.  If we don't hang on too tightly.  Big If.  

Which reminds me of another favorite quote I have been holding out on posting here.  This one I saw on a magnet at Powell's Books, and I swear to this day I will go back and procure the thing... although maybe I do not need to, since the sentiment is so emblazoned on my brain:

Let Go or Be Dragged.

'Cause, really, let's get serious here:  Those are our only two choices.  

And, for me, it is in the letting go, in my allowing myself to just be -- to just be with the possibility of my death, to just say:  Okay, there may be nothing more to get from this tree, nothing more to ask of it, it looks pretty far gone from here.  Abandon hope.  Let go.  Just be.

And then the blossom appears.

I cannot tell you how surprised, how grateful, how stunned I was-- and am even now-- by the grace implied in this gesture.  Of how completely ordinary and completely beloved this swinging wide of the gate made me feel.  Pema Chodron says we can count on the universe, it will always speak to us, it is always in response to us.  My little yes was met with such an outpouring of blessing, that truly, I can hardly comprehend or find words for it.

And yes, I forget and I get peeved or I get swelled up with pride, or a million other things.  But then I remember.  I remember, and I wake up and swear to you my darlings, I laugh.  I laugh!  I forgive my small mind, my fear, my grasping, and as tenderly as a mother untwining her child's fingers from too much Halloween candy, I let go.  

And every time, every single time I let go, the universe mets me where ever I am.  It is extraordinary.  And, I am convinced, it is extremely ordinary.  Our birthright.  Or maybe our birth privilege.  

I do not pretend to understand all this.  I call this kind of thing yoga-magic--  I don't necessarily "get it", but I cannot deny that it exists.  And because I continue to fuck up, I  continue to experience it again and again on every scale and every level:

On the withered tree, a flower blooms.

Inquiring Minds

People ask me just what all I have been doing in response to my Stage 4 breast cancer diagnosis.   I suspect this curiosity is in part due to my results:

I have gone from feeling like an absolute piece of shite, with no energy, limited ability to move, think, eat or shit (pardon my french, but this is so damn essential to one's health and happiness--- if you do not have cause to know this from personal experience, may god bless and keep you so blissfully ignorant) -- to feeling pretty durn good on the physical plane.   And, if I do say so myself, on a bit of a red-hot roll in terms of my spiritual growth and general level of joy and sense of liberation.

First of all, as they disclaim on late-night TV:  Results Not Typical.

It would be crazy to advocate driving into a brick wall because it feels so good when you stop.  Three strikes with cancer and one damn-near wild swing at death is not the only way to wake-up.  But waking up is good.  A damn lot of hard work and I know it is not over yet--- (My yoga teacher evidently has a circle of friends who laughingly refer to themselves as "spiritual over-achievers" in a nod to the fact that it ain't ever over, baby.  Ever.)  But waking up is good.  It makes appreciating everything else possible.  And I have to credit cancer-- and the resulting comprehension of the reality of death, ie, impermanence--  as the vehicle that woke me up.  When the student is ready...

Secondly, if you have read much of this blog, or know much about my history with cancer, you know that I am a firm believer in finding out what you believe and acting in accordance with it.  The research I did 13 years ago during my first dance with this disease taught me that the single most important thing that survivors of cancer had in common was that they acted in accordance to their own beliefs--- whether that was juice fasting and prayer or handing it all over to an expert in a lab coat.  

Yes, information is power.  I love information.  I seek out a lot of it.  I want to understand how things work-- even scary, technical things like chemotherapy drugs.  But part of the reason I want to know these "facts" is so I can engage my imagination and my belief system to work with them.  And I want to do that because as an artist I instinctively understand just what powerful allies imagination and belief can be.  In a battle with mere facts, I would not bet against them.  (But hey, maybe there need not be a battle--  maybe they can better serve us working together.)

This discovery-- the importance of acting in accordance with one's beliefs--  lead me to work with acupuncture, Tai Chi, Traditional Chinese Medicine and naturopathy as modalities for treating my cancer.  (Along with traditional, conventional, allopathic, western medicine:  After all, the first thing I did was have surgery to remove the lump from my breast.)

I can go into this at length another time-- how my understanding of the systemic nature of the disease, along with chemo's really rather shoddy record as a breast cancer "cure" lead me to these conclusions-- and how successful the line of treatment I chose was:  Seven years cancer free is something even a avowed chemotherapist would consider a triumph. After all, at five years out, They (in this case, Conventional Medicine) pronounce you "cured."  (At ten years out they do it again, which if one is paying close attention may prompt one to ask, Wha' the heck? )  But I want to get to what I am doing NOW, because that is what I get asked about.

My second bout with cancer was in 2004.  I once again sought advice from both allopathic, western cancer docs and a naturopath well-versed in breast cancer.   The naturopath-- while reminding me that I  had a choice-- recommended I undergo conventional treatment (surgery, chemo, radiation, hormone drugs) and support myself with naturopathy and acupuncture (and love and imagination and friends and hydrotherapy and meditation-- my usual go-to cure-alls.)  It was a long season in hell, but I came through it, and had another, what? Six years without cancer.

They (ie, Conventional Medicine) declared me "cured" once again at five years out.  Which meant that the Breast and Cervical Cancer Program which had been providing my health coverage unceremoniously gave me the boot.  I believe the letter said something like:  Good Luck Finding Health Insurance out there in the Free Market with a Pre-existing Condition of Recurrent Breast Cancer! 

So.  Now.  Summer of 2010, Round Three, Stage Four.  Conventional Medicine no longer considers my breast cancer "curable."  ( Uh.  Like they did such a great job curing it before? But I digress...)

In part, I think, because They have so little to offer me -- other than the hormone medication and the strengthening agent for my bone metastasis, which hope to hold the progression of the disease at bay, at least for a time-- Conventional Medicine is more open then ever (and the good people at Celilio have always been particular good about this, being all cutting-edge and west-coast) to my incorporating "complementary" or "alternative" treatments into my regime:  No-one acts like acupuncture is akin to examining the spilled entrails of a live chicken (unlike when I brought a acupuncturist in to treat  my brother-in-law while he was in a hospital in PA).  In fact, Celilo has an acupuncturist on staff!  And while getting them to actually include my naturopath in the loop of monthly lab reports, etc, takes on-going prodding on my end, no-one has raised the least objection to it.  At least not until just recently...  we'll get to that story shortly.

SO.  For those wanting The Recipe for my current success:  Under the guidance of my oncologist at Celilo Cancer Center , Dr. Sam Taylor, I take:

• Arimedex, in generic form, by mouth, once a day.
• Zometa, by IV, once a month.
• Blood draws, for labs including measuring tumor markers, once a month.

Under the guidance of one of the leading researchers developing a protocol for naturopathic approaches to breast cancer treatment, Dr Leanna Standish at Bastyr University, I take the following twice a day:

• Turkey-tail Mushroom Extract:  Called by other names in Chinese and Japanese medicine, it has been used for centuries as an immune strengthener and for the reduction of tumors.
• Curcumin:  A component of the spice turmeric, held to be a natural anti-carcinogen.
• Bromelain: An enzyme found in pineapple, thought to aide digestion and reduce fluid build-up.

By my own lights, and with permission from both health-care professionals, I continue to work with

• Yoga 
• Meditation
• Acupuncture 
• Other assorted mumbo-jumbo-- including occasional medical marijuana, which I have found quite helpful.

That's where we are now.  And next?

My naturopath would like to add to this regime a monthly infusion of high-dose vitamin C.  My oncologist will not sign off on same.  Meaning I cannot receive it at his institution while I am sitting there once a month with a needle already stuck (finally, usually with great difficulty and distress-- remember, I am a "hard stick"!) in my vein.

Why not?  I do not have a definitive answer from him yet.

I put the question to him mid November.  I heard through Nina, the Oncology Nurse Practitioner, that Dr T had said No, he did not want me to take vitamin C.  When I  asked if this pertained to IV as well as oral, as there is new research on just that distinction (there had been earlier evidence suggesting that high doses of oral vitamin C might increase tumor growth), she did not know.  I told her about finding this online from the Canadian Journal of Medicine:

"In light of recent clinical pharmacokinetic findings and in vitro evidence of anti-tumour mechanisms... the role of high-dose intravenous vitamin C therapy in cancer treatment should be reassessed. 

• Intravenous administration of the maximum tolerated dose of vitamin C produces plasma levels 25 times that achieved when the same dose is administered orally. At high plasma concentrations vitamin C is toxic to some cancer cells but not to normal cells in vitro.

• Using the National Cancer Institute Best Case Series guidelines, the authors reviewed 3 cases of advanced cancer where patients had unexpectedly long survival times after receiving high-dose intravenous vitamin C therapy.

Implications for practice: In a setting of biological plausibility and clinical plausibility, further research into vitamin C as a treatment for cancer is warranted.

This article has been peer reviewed. "

My naturopath, Dr. Leanna Standish, is currently involved in this kind of research.  She sees evidence suggesting that taking Arimedex and IV Vitamin C together is more effective against Stage 4 breast cancer than either one alone.

I understand this has not been proven effective yet... but has it been proven harmful?

And since it is my body and my risk, and since conventional medicine has nothing better to offer me, if I am willing to play the guinea pig, why not let me to give it a try?  I would like to hear more arguments both pro & con.  Stay tuned.  I will find out what I can.  After all, I have an inquiring mind myself...

In the meantime: Yes, thank you for asking, and as Godfather James Brown says,  I feel good!

Pema Chodron - Five Slogans of Machig Labdron

Want to wake up and be of service to the world?
Here are the five instructions given to Machig Labdron in the 12th century:

1)  Confess your hidden faults.
2)  Approach what you find repulsive.
3)  Help those you think you cannot help (sometimes translated as those you do not want to help).
4)  Anything you are attached to, give that.
5)  Go to the places that scare you.

Those are just the everyday, how-to-life-your-life, "relative" instructions.
The "absolute" instruction?

If you do not grasp with your mind,                                                                                                         you will find a fresh state of being.


Dearest Pema,
Thanks for giving me plenty to work with in the New Year.  I am grateful.  And a tiny bit overwhelmed. Your friend and great admirer,
althea

Dedications/Pledges/Commitments

 by William Stafford

For the past.
For my own path.
For surprises.

For mistakes that worked so well.
For tomorrow if I'm there.
For the next real thing.

Then for carrying it all
through whatever is necessary
For following the little god who
speaks only to me.


My friend Gin sends this poem out in some form almost every new year.  So every year, I re-discover it.   It is always worth re-reading.  And every year I get a brand new chance to re-dedicate, re-pledge and re-commit to it.  Here's your chance!  

Best wishes.  And thanks, Gin.  

"Everything is Connected; Nothing Lasts; You Are Not Alone."

"Sometimes when I’m asked to describe the Buddhist teachings, I say this: Everything is connected; nothing lasts; you are not alone. This is really just a restatement of the traditional Three Marks of Existence: non-self, impermanence, and suffering. I don’t think I would have expressed the truth of suffering as “you are not alone” before my illnesses, but now I find that talking about it that way gets at something important. The fact that we all suffer means we are all in the same boat, and that’s what allows us to feel compassion." 

This quote is from  "The Authentic Life", Lewis Richmond interviewed by Andrew Cooper, in Tricycle Magazine, Summer 2010.  Brilliant, I think, and brand new to me.  Want more?  Click on the link above for the whole interview.  Here's another tidbit:

"Without the misfortune of my illnesses I would not be able to teach in the way I do today, which includes advising and counseling people about illness and loss. So in a dharmic sense, my illnesses were also gifts. The encephalitis brought me to my knees; but in Buddhist practice, that’s not necessarily a bad thing. I got to find out what is really important, whether we’re talking about Buddhist practice or life in general.

When you take everything away, what have you got? That was the situation I had to work with. Having had everything stripped away, I understand that Buddha-mind does not depend on our capacities. The engine of practice is always there going. I unlearned a lot."

Lewis Richmond has written two books, Work as Spiritual Practice, and Healing Lazuarus.  His third, Aging as a Spiritual Practice, is due out in 2012.

A Little Background...

I want to back up a bit and give you some relevant details about my earliest encounter with cancer, and through cancer with our medical and para-medical establishments.

Over 15 years ago now, I discovered a small pea-like lump directly under the nipple of my right breast. I was maybe 35 years old.  My mother and maternal aunt had both had bouts of post-menopausal breast cancer-- as had an unusually high number of women of their generation living in our commercial farming community located downwind and downriver from the Hanford Nuclear Reservation.

I went to the only doctor I had in Seattle at that time-- she was a naturopath.  She concurred that this lump was worthy of suspicion, and suggested I go for a mammogram. But where should I go?  I had no health insurance.  I called the various "Women's Clinics" abundant in Seattle to find out how much this procedure would cost.  No one from any doctor's office could give me that information.  NO ONE KNEW.   They knew the insurance code, but clearly most people did not pay for this out of pocket, and getting anyone to give me a price-- much less enough information to compare prices-- well, I am pretty sure that never happened.  I think I just picked a clinic near me and hoped for the best.

It was in a tall office building on what is called Pill Hill in Seattle.  I rode up in a cushy elevator.  I entered an office clogged with ferns and shades of pink and mauve. Fancy!  Pink coffee cups.   Mauve curtained dressing rooms.  Attendants in rose-colored scrubs.  A wrap-around gown in-- you guessed it--mauve.  I was shocked out of this plummy dream by my first ever mammogram.  (Jesuz-ouch!  That old adage about having one's tit in a vice is no joke...)  I was told not to get dressed yet.  The Dr wanted an ultra-sound.  Uh, and how much would that cost?   They didn't know.  Was it necessary?  The Dr. thought so, and, after all, he's the Dr!

I lay down in another room next to what looked like a large TV monitor.  The Dr, a large white-haired man in a large white coat, swept into the room.  He was clearly in a hurry. ( Imagine the long line of women in mauve gowns awaiting his attention.)  Maybe he introduced himself to me -- I was in such foreign territory, I might have missed it.  He squirted this nasty cold gel on my bare breast and squished something hard into and all around the nipple.  He said,  Just as I thought.  This is nothing.  A clogged milk duct.   

And with that I was dismissed.  There was no further discussion.  I got a bill for several hundred dollars in the mail.  Oh, and they encouraged me to return next year to do the whole thing all over again.  Ah, no, thanks.

There was NOTHING about the experience that I felt good about.  I did not trust him.  I did not like the place.  But here was a Dr, a specialist, with all this special equipment, and he said it was nothing, so it must be nothing, right?  After all, just because I didn't like it, doesn't mean they don't know what they're doing.  And, besides, it cost a lot of money.  Especially to find out it was nothing.

So, for at least a year or two after that, when I got a breast exam as part of my annual check-up at the free clinic, I told the doctors that I had a clogged milk duct in my right breast, that I had been to a specialist, and had been told it was nothing to worry about.

Then one year, the doctor who had done my previous year's exam said,  Hmmm, this feels different to me.  I think you should get another mammogram.

I am eternally grateful for her vigilance. And I am grateful to my friend Kim for forcefully encouraging me try yet another therapist, and I am grateful to that therapist for persistently encouraging me to try an anti-depressant, and I am grateful to Zoloft for getting me to a place where I could even consider getting annual exams...  As I used to say, Thank God I was not depressed when I discovered I had breast cancer.  I might not have lived to tell this tale.


When I told my free clinic doctor, with some perturbation, that this was the exact same lump that the special breast Dr had told me was nothing, she said, Well, we can't be sure it is the same lump.


But I can be sure.  It is my breast.  I have felt this lump at least once a month for at least two years now.  I am familiar with it-- so familiar that I did not notice its subtle changes like you did having examined it only once a year.  This guy got it wrong.  Really, really wrong.  Shouldn't he at least be told?  Doesn't he have any responsibility?


The short answer is no.  He does not.

The unspoken answer is that doctors do not tell tales on other doctors.

And the final answer is that one must trust one's instinct, and do one's best not to be persuaded by fear or by desire.  I wanted to believe this guy-- even though everything, every single thing about him, the place, the procedure, the event felt wrong wrong wrong to me.  I wanted to believe in his big white coat, in his authority, in the idea that he knew something I did not know about my body even though he hardly bothered to take either me or my body into his busy circle of attention.

This lesson has not been lost on me.  I am willing to partner with all kinds of medical/health practitioners, but I have never again abdicated my responsibility for the decisions I make about the care of my body.  I am glad for the expertise each brings-- grateful that they know more than I do-- but I no longer seek comfort in trusting their authority.  I ask a lot of questions.  Some practitioners can work with that, some can not.  I find the ones who are willing to partner with me.  I try to keep my mind and my eyes open.

I am no longer impressed by anyone's big white coat.