Thursday, January 6, 2011

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!

1 comment:

  1. I love you. I love this blog. I love Pema.
    I keep returning to this, thanks for sending:

    Rumi - Guest House
    This being human is a guest house
    Every morning a new arrival.
    A joy, a depression, a meanness,
    some momentary awareness comes
    as an unexpected visitor.
    Welcome and entertain them all!
    Even if they are a crowd of sorrows,
    who violently sweep your house
    empty of its furniture,
    still treat each guest honorably.
    He may be clearing you out for some new delight.
    The dark thought, the shame, the malice,
    meet them at the door laughing,
    and invite them in.
    Be grateful for whoever comes,
    because each has been sent
    as a guide from beyond.