This
talk was given in January of 2008 at the Evidence-Based CAM Conference
and can be ordered from: http://www.cstapes.com
or by calling (845)679-6885.
SMART AND INFORMED SELF
MEDICATION: OMG, AFTER ALL ITS MY BODY
by Madeleen Herreshoff
ABSTRACT
In my
work with cancer clients I have become more and more aware that many
of them are resorting to self-medication for various reasons. Some
cancer patients are self-medicating due to finances, others due to
not getting what they need from the experts, or due to an unwillingness
to travel far and wide to doctors and clinics.
Self-medication is more possible now with the vast amount of information
and resources available on the Internet. The Internet provides access
to peer-sharing information on Listserves, to organizations that provide
in-depth resources for the cancer patient's particular cancer, to
stories/blogs from many survivors sharing their experiences and more.
My talk focuses on bringing awareness to the rapidly increasing phenomenon
of self-medication and touches on how cancer patients can empower
themselves to be "smart" and "informed" in their
treatment decision process, taking into account their particular style
of risk-taking.
SMART AND INFORMED SELF
MEDICATION: OMG, AFTER ALL ITS MY BODY
My name
is Madeleen Herreshoff and I am the Director of CANHELP Inc, a cancer
treatment information and referral service founded in 1983.
I am
really going to enjoy introducing this acronym OMG. If you are an
active person on the Internet and if you are younger than I am, you
will probably already know OMG. I learned OMG and other funny words
like LOL three years ago when I started to look into BHRT (Bioidentical
Hormone Replacement Therapy) on the Internet where I entered the amazing
world of list serves and blogs. OMG, oh my God, this was an eye opener.
There is more information and experience being shared on these listserves
and blogs than you can absorb. Some are excellent, and of course some
are foolish.
I have been a cancer advocate for the last twelve years and during
these 12 years I have talked nearly daily with cancer clients of all
walks of life, of all ages, with every cancer and at every stage of
disease. I myself have walked the cancer road twice and am a walking-one
breasted woman. Tomorrow at Lynne Farrow’s talk “The Perfect
Storm Theory of Breast Cancer“, you can see my one and only
breast on screen showing how iodine helped “disappear”
a cyst after just 6 months of self-medication. As an aside, shortly
after my mastectomy in 1994, a Dutch niece of mine, who is a photographer
and lives in Amsterdam, asked if she could photograph my one breast
with a tulip over the fresh scar side. I was exhibited in such fashion
in a well-known gallery in Amsterdam. My one breast is famous! LOL
(laughingoutloud).
Recently,
I have taken a hiatus from working with cancer clients in order to
re-evaluate my priorities. One of my new projects is writing a book
based on my working with cancer clients for the past twelve years.
My talk today focuses on pulling the ghost out of the closet on a
Self-Medication movement. This movement has been going on more or
less silently in fear of having the medical world respond with DANGER,
DANGER, DANGER, BIG C or worse in fear that they will try to stop
us from self-medicating. I just read that the big pharmaceutical company
Wyeth has been lobbying the FDA to put a stop to the compounding of
bio-identical hormones for women. So this fear is certainly not unfounded.
We all know what it feels like to be disempowered and for the cancer
client it can be devastating.
At the
time I was contemplating writing a book on self medication, I saw
a beautiful movie called “Gypsy Caravan” with the subtitle
“You cannot go Straight, when the Road Bends”, a Romani
proverb. Wonderfully simple and direct. But we all know when you have
cancer nothing appears simple and direct. Your world turns upside
down and all of a sudden you have to learn everything about your particular
disease and treatments in as short a period as possible. Typically,
we get overwhelmed with information, even when hiring companies like
mine, CANHELP or Cancer Decisions run by Ralph Moss and others.
In an
effort to address this big problem (we all know cancer patients need
to be less overwhelmed not more), I started offering private consultations
to my clients a year ago to alleviate this sense of being overwhelmed.
Up until then, most of my information was supplied in individualized
reports with limited telephone support. As I spoke with cancer clients
more intimately over time, they confided that they were often self-medicating
and finding it very difficult to share with their doctor what they
exactly were doing.
I discovered that my clients were calling me to get empowered for
what they are doing or wanting to do. They want to learn to listen
to their bodies rather than get care primarily based on the experts‘
opinions or statistical numbers. Thus, one day, it hit me that these
clients were part of a fairly new and clandestine self medication
movement. OMG
There
are various reasons for this phenomenon. One may be financial reasons,
another dissatisfaction with their doctors treatment/protocol. As
cancer patients are getting better educated about what treatments,
supplements etc. are out there, they learn to manage their health
journey more closely. They have figured out how to order a lot of
the supplements or nutraceuticals recommended by their doctor on the
Internet and often find ways to get them cheaper. They can even order
supplements that may be impossible to obtain here in the U.S. from
overseas or travel across the border for them. Cancer patients are
getting VERY savvy about these possibilities and readily share this
information with their fellow cancer patients, who are interested
in looking outside the box.
This
new breed of cancer patients feel it is their birthright to self medicate.
I read an article in the New York Times some years ago about the increasing
phenomenon of yuppies getting their pharmaceuticals from overseas,
but in the case of cancer or for that matter in the world of hormones,
the age group looking to self medicate spans across the board, from
twenty year olds to eighty years old.
Allow
me to backtrack here to my own cancer journey. In 1991 I was diagnosed
with a poorly differentiated aggressive invasive breast cancer I had
surgery, radiation, but refused chemotherapy, even though the doctors
told me I would be dead in 5 yrs if I refused. My friends set me down
and with the best of intentions told me about so and so who did chemo
and survived, “did I not want to do this for my young son“,
“chemo is not so bad” and “didn’t I want to
live“? My husband was the only one who said: “You think
about what you want to do and I will support you, no matter what.“
If I had not had him, I am not sure I could have gone against the
fear mongers. This was 1991 and going against the advice of the doctor
was not any way as prevalent as it is today.
I realized
that if I wanted to see my young son go to college some day, I had
to do what I thought was best for me, not what the doctors thought
was best. But I knew I had to put something else in place to prove
the University multi-task team wrong. I learned about alternative
therapies, good food, avoiding estrogens, plastics, endocrine disrupters,
etc. In May of 2008 it will be 17 yrs since my first occurrence of
breast cancer. I did have a local recurrence and a mastectomy three
years later. At that point, I intensified my alternative treatments
and learned in the process how to self-medicate.
So how
did I know how to Self Medicate? By educating myself, by seeing a
variety of doctors, conventional and alternative, joining an Internet
breast cancer list serve Amazon and yes by trial and error. AND over
time I learned to pay attention to how I felt or what my body was
telling me. Accordingly, I changed, added to or subtracted from my
protocol . Yes, I made mistakes. I “wasted” a lot of time
and money going into dead-end roads, not realizing that “You
cannot go Straight, when the Road Bends.”
But,
these dead-ends taught me a lot. They taught me that my choices were
often based on the FEAR factor, which rarely resulted into a good
outcome. FEAR is our biggest obstacle, esp FEAR OF CANCER or as they
call it in our case the BIG C! Not only can FEAR lead us into making
wrong choices but it can also stymie us. I can’t tell you how
many times my cancer clients who have all the information they need
to act, get completely stuck and unable to make a step forward, because
of thoughts or beliefs such as “my doctor told me not to do
anything else than his/her protocol” or “what IF“
and “how do I know it’s the right thing to do?”
OMG, is right. Ultimately, nobody knows for sure what the right thing
to do is, no matter which direction you take; conventional or alternative
treatments both come with RISKS. My friends and clients have survived
and died in both camps. The best the cancer client can do is “to
do the next thing” after having done the research and checked
in with their body.
After
all its YOUR body! When I ask my cancer clients what they really WANT
to do, the answer is often different than what the logical mind is
telling him/her. So the big question here is how do you bridge what
cancer treatments you SHOULD do and which treatments you WANT to do.
First, lets take a quick look at how the medical establishment is
curing cancer.
Lets
face it we are losing the war on cancer. Nixon declared a war on breast
cancer and other cancers in 1971. And here we are mind you 37 yrs
later, in 2008 and we are still hard at it to provide a cure for most
cancers. As long as I see my friends and family members struggle and
die from this disease, I am not impressed with our war on cancer.
As a matter of fact, “war on cancer” is a very ill-conceived
notion. We need to be focusing on how to heal from cancer.
Over
1.4 million new cancer rates and 560,000 deaths of cancer were projected
to occur in 2007, showing a continuing increase in the incidence rate
by 0.3% per year in women. OMG! Doesn’t sound to me that those
numbers may save our children, especially not my granddaughter or
for that matter African Americans who still carry the highest burden
of cancer.
Those
of us who have seen our mothers and fathers or dear friends struggle
with cancer, do not want to suffer from multiple courses of chemotherapy
and/or radiation. With increased access to information, cancer patients
are getting smarter and are actively seeking other routes towards
healing and they are learning how to self-medicate. Many of those
who self medicate feel it has saved their life, esp those who have
gone from doctor to doctor, clinic to clinic for help without desired
results.
So what
exactly does self medication look like? The picture is going to be
very different for each individual. I have clients who medicate themselves
primarily without doctors other than follow-up diagnostics. This type
of client, so to speak, never steps outside of his/her house for therapies,
orders supplements up from the Internet, brews special fruit drinks,
eats special diets, tries innovative alternative therapies, detoxes,
injects, and manages to survive. I know an 84 yr old man, who was
diagnosed at the age of eighty with a pancreatic cancer mass wrapping
around his spleen and into his stomach. At first he refused to do
anything about his large inoperable mass.. The prestigious University
surgeon gave him 6 weeks to 3 months to live. But his son talked him
into getting a report from CANHELP, did his own research as well and
put together a protocol they could do at home including high dose
German enzymes called Wobenzyms, mushrooms, the Budwig diet, Poly-erga,
making their own turmeric pills as well as other supplements. After
9 months on this protocol he felt so much better that he decided to
have a CT scan. The scan showed that the mass had shrunk significantly
with some residual left. 12 months later another scan showed he was
clean. In May he will be 85 and, being an architect, he is busy designing
a small, energy efficient house. To this day he is still doing some
modified anti-cancer protocol. He is believer of the Wobenzyms or
Wo-begones as he calls them.
Other
cancer clients consult with many unconventional doctors and follow
the protocol carefully until it looks like it is not working or too
costly. Then they gleen from their protocols what’s best for
them. I am sure you are aware that it can be very costly to go to
unconventional doctors because insurance may not cover their care
or they will prescribe nutraceuticals, intravenous therapies and other
lotions and potions which easily can cost the cancer patient $200-
300/week. One of the therapies I often recommend for lung cancer clients
is the Sun Soup, which costs $650 for a month supply. When you add
that to other nutraceuticals, therapies etc. the cancer client is
easily out $1,000/month on supplements alone. Not everyone can do
that or not for long.
So lets
take a case of one of my cancer clients who wants to take the Sun
Soup, which is based on mushrooms, soybeans and other ingredients,
and after 3 months he or she can no longer afford it. We all know
that most of the time any cancer treatment needs to be taken longer
than 3 months in the hope to shrink a tumor or avoid a recurrence.
So some of my clients look for a substitute cheaper herbal soup with
similar ingredients from companies such as Avena Botanicals, although
not peer-reviewed like the Sun Soup.
But not
all self-medicators are poor or have limited funds. There is another
cancer person who does have money, but who had become profoundly dissatisfied
with the medical establishment‘s care for cancer, not making
improvements or getting inadequate support for what the person wants
to explore, even if this is within the medical world.
Many
of my clients are so good at gathering information from list serves,
cancer advocates, cancer treatments centers, cancer doctors, friends,
support groups that it has become a way of life for them. One of CANHELP’s
clients, Julie, was diagnosed in her late thirties with advanced breast
cancer, and consulted with me four years ago. She did not want to
do any conventional treatments, no surgery, chemo or radiation for
her 6 cm breast tumor with possible lymph node involvement.
I am
not a doctor and do not tell my clients what to do and I generally
do not to try to talk them out of their decisions, esp if they feel
very strongly. I will explain possible risks, but NEVER EVER will
I threaten them with the big C. This woman has been one of my most
diligent clients, following up with each referral I passed on to her..
She self-injected BCG vaccines, Coley’s toxins, causing fevers
and sweats, detoxed daily with coffee enemas, drank lotions and potions,
traveled to see, among others, Dr. Block in Illinois, Dr. Brodie in
Nevada, Dr. Chan in Vancouver, Dr. Munoz in Mexico, Dr. McClelland
in San Diego, and Dr. Wilcox in Alabama. She took away information
from each one and incorporated it into her own protocol. She had signed
up for the Amazon list serve which has a huge following among alternative
breast cancer patients. Julie worked really, really hard, to reduce
her 6cm tumor burden in her breast, but the mass kept on growing and
earlier in 2007 it approached 10 cm, and looked ready to burst out
of her breast.. She was coughing off and on from pleural effusion
and had some bone involvement. I and others encouraged her to look
into a course of low-dose chemotherapy with Dr. Ben Chue of the Seattle
Cancer Treatment and Wellness Center. Julie turned herself inside
and out to come to terms with the proposed poisonous therapy. She
felt she had failed. However, she wanted to live and if her past experience
taught her anything, she knew she had to be open-minded. She knew
deep inside that you cannot go Straight when the Road Bends. She went
through three courses of low-dose chemotherapy lasting 9 months! And
it was not an easy road for her, her legs had edema, her feet turned
purple from neuropathy, her energy and mood dropped upsettingly low.
But no matter what, she continued everything she had been doing alternatively
at the same time as her chemo protocol. She detoxed with coffee enemas,
colonics, did high dose intravenous vitamin C once or twice a week,
Meyers cocktails, hyperbaric oxygen therapy, sodium bicarbonate and
more. One part of her, stayed true to what she believed in and it
paid off. And Julie is now very much alive, her 10 inch tumor is gone
and her cancer markers keep going down down and is now well within
the normal range. She looks great, she has her courage again and she
is my miracle woman! I love you Julie. Stand up Julie and lets give
her a big applause!
So the
title of my talk is “Smart and Informed Self Medication”.
How then can we be smart and informed about self medication?
First
of all you need to know you are not alone. There
are quite of few of us who are doing it. There is support for you
out there. Here are some guidelines to consider:
Get
educated and informed. Enlist services like CANHELP, CANCERDECISIONS,
Annie Apple Seed Project, BreastCancerChoices, CancerMontly etc. Be
aware that you may get overloaded. Don’t be afraid to ask for
help from friends to research information. My cancer clients’
consumption of information varies widely.. Don’t spend hours
on the computer. Take your time to absorb the information and do not
believe everything you read or hear.
Take
time to evaluate a new or proposed therapy. I try to approach
each new therapy, conventional or unconventional, with an open mind.
A new fad can hit the Internet and everyone is exited and wants to
know where and how they can do it. There are always high-risk taking
cancer people out there and they will be the first to jump in. I watch
and listen and see what the overall results are. Often the fad is
gone as fast as it has arrived.
Find
cancer advocates and coaches who do not work from the FEAR model,
who can support you when you are unsure and confused.
Don’t
be afraid to switch when it looks like a therapy is failing.
I tend to use 3 months as my critical marker, if the cancer is growing,
switch. Remember there is always another bend in the road, when the
present road peters out.
Function
in “Your Style of Risk” as Michael Lerner from
Commonweal in Bolinas, CA (where they have a wonderful cancer retreat
program that I highly recommend) recently said at a conference I went
to. There is no way to take risk out of the equation of cancer care.
Some of us are high risk takers, some of us are low risk takers and
others consider themselves “no risk” takers by playing
it safe and follow the doctors‘ advice. However I seriously
doubt there is such a thing as “no risk” with cancer treatments.
If there was no risk we would not be dying of cancer, what was it,
550,000 people this year? Bottomline, don’t take anything for
granted, not your life, not cancer treatments.
Check
in with your body regularly, find out of how your choice
of treatment resonates with your heart.. Don’t rely merely on
pills, lotions and potions. Know that we have an internal capacity
to heal and learn to trust your intuition. You know more than you
think. Remember you have been programmed by our medical system to
be powerless when it comes to cancer treatment choices.
Monitor
your progress no matter what you are doing. Get a doctor
to order tests or discover how you can get diagnostic tests without
a doctor such as CanaryClub, LEF, Zava labs etc. You can order up
your own cancer blood markers!
Find
new ways to work towards equilibrium and wholeness. Do your
best not to let your treatments run your life. Play music, draw, garden,
walk, breathe deeply, and rest.
To summarize,
cancer is a process we learn to live with so hopefully we can one
day live without it. Seeing it as a process of healing gives us tools
as to how best cope with it. As in any process there is no right or
wrong path laid out for us. Scientists do this all the time, they
start with a hypothesis based on their best guesses and them move
forward from that, if their hypothesis is proven wrong, they tinker
with their initial hypothesis or abandon it for a new one, perhaps
surprisingly different from the first path. Be aware that "we
cannot go straight, when the road bends." Self medication may
well be an integral part of this journey towards healing.
Thank
you, Madeleen
Herreshoff
January 2008
