NOTE: To avoid
misunderstandings: I'm not writing about people who take psychedelic
drugs with the goal to cure cancer, nor about those who
take psychedelics in therapy to cope with the cancer diagnosis and a
conceivable death. Questions about claims I make, I will gladly answer,
and there is a list of links at the end.
1.
THE SIDEFFECTS OF RADIATION/CHEMO ARE ALTERED STATES
Monday, the 19
th
of July, the prophylactic part of my therapy started: Five
weeks of external beam radiation and two adjuvant doses of chemo
(Cisplatin) – There were only two days of chemo at the beginning
and and two more days at the beginning of the third week.
(About myself: I'm a
digital designer in Los Angeles, 68 years old, in 2003 was diagnosed
with squamous head and neck cancer, survived chemo and radiation, and
have been cancer free until 2008 when an unrelated bladder cancer
showed up. Surgery and BCG kept it away until 2013 when the cancer
became muscle invasive and was treated with the currently most
progressive method: HDR Brachy-therapy, which is practiced only at
three locations in America, and, by a lucky coincidence, at UCLA.
After surgery and Brachy I should have been fine, but bladder cancer
tends to return, and so far only prophylaxis is the key to survival.
So I had to endure another round of external beam radiation, combined
with two additional chemo-treatments.)
The therapy started
simultaneously with radiation and chemo, which complicates my attempt
to describe the effects of the therapy, because it is difficult to
differentiate between the effects of the chemo and the radiation.
The first noticeable
effect which told me that therapy had started was a sincere feeling
of being poisoned at a very deep level, not organic, not cellular,
but molecular.
Of course, they also
load you up with anti-nausea medication – I don't know how well
these first days would have passed without a heavy medication.
In my particular
case the first effect is a short period during which my
nearsightedness disappears. Nearsightedness is supposed to get
better with old age, and presumably the chemistry and radiation that
stops growth, aged me instantly, and now my eyes focused perfectly
without glasses. This unexpected pleasant experience did not last,
because even though I could focus, I didn't really see very well! It
was a different problem – the refreshment rate of my retina seemed
like it was down from an average of 10/12 images per second, to
two/three per second. It almost felt like I needed to blink every
time I wanted to refresh the image. Also, the image tended to get
blurry, but not from lack of focus. It reminded me of a very
exaggerated image compression that computer programs use to minimize
the file size. The details, like a picture on a wall, are still
clearly defined, but the empty wall between would be filled with some
blurry random noise in the color of the wall. Like my brain was
trying to cut down on the info load to save energy.
Sound problems were
not that noticeable in a noisy environment, but at night when lying
down in bed I heard a high pitched white noise, which at times would
become so dominant that I wondered if there was a forgotten amplifier
or some hidden gadget in the house that just needed to be turned off.
Later in the therapy the sound varied, anything between ringing and
hissing, sometimes stereoscopic sounds flying in from outer space
directly into my head. Actually, it is really annoying and I'm not
sure if it ever will disappear completely.
The most horrendous
change in perception comes from taste and smell. At the beginning of
chemo I indulged in a ferocious appetite, which made my oncologist
happy, because he knows what is coming down the chute. So one day I
wanted to take a happy bite from a banana -- and had to spit it out
instantly!
It tasted like I had
bitten into a piece of metal, and at that, an extremely metallic
tasting piece of metal. Like the essence of metal!
It was as if the
dial had moved from the safe green into yellow and red, and then it
rotated a couple of times and would stop where everything smelled and
tasted like shoe-polish with sugar. I wondered why it would stop at
such a disgusting part of the dial, but I have researched a bit and
it seems like most people have horrid (often metallic) taste and
smell distortions, while a few just taste nothing at all.
There is a reason
why I describe these unpleasant details: As an old psychedelic
traveler it occurred to me that maybe I was experiencing the opposite
of a psychedelic trip.
I imagined what
would happen if I treated the radiation/chemo therapy like it was a
mind-expanding trip, one that lasts five weeks?
2.
A BRIEF DIFFERENTIATION OF THE EFFECTS OF RADIATION/CHEMO ON THE MIND VERSUS PSYCHEDELIC DRUGS
It seems that the
changes in perception caused by radiation/chemo are the opposite of
what one experiences under the influence of psychedelics. I will lump
all psychedelics together for convenience and simplicity.
Admittedly, we don't
really know how exactly psychedelics induce the extraordinary changes
in perception, but everybody agrees that all senses are woken up, all
(protective?) filters are removed, the mind is flooded by sensations
of a world that appears vibrant, bright and new.
Sober eyes see a
fast motion as a blurry woosh. (which works so well that we can watch
films and television due to the “persistence of vision”.) On LSD,
on the other hand, the refreshment rate of the receptor sites located
in the retina is so rapid that the blurry woosh turns into many
strobe-like images, all superimposed, and each perfectly clear and
detailed like a still photo. Not only are the details magnificently
clear -- there are more details to be seen than you ever thought
existed.
An abundance of
energy seems to speed up the neurological computer which involves all
senses. The hearing is flawlessly clear – one hears new sounds on
familiar pieces of music that were never accessible before. Smell,
taste, and touch also operate like it's the first day of creation.
Just the opposite of
the radiation/chemo experience!
Now, one might ask,
if the perceptual experience of psychedelics is just the opposite of
radiation/chemo – what's so interesting about that? Well, there are
similarities between both events that are not so obvious. For
example, we have to admit that from a scientific point of view,
either approach is relatively primitive and not too well understood.
To ingest 100
micrograms of LSD is like throwing a bomb into your mind, your ego,
your brain. Most mental routines and programs don't work like they
used to. You experience yourself as fragmented into a million little
pieces and you can but hope that somehow, with time, all the pieces
will reassemble – and maybe this time in a better constellation!
This describes roughly how it should work.
As Tom Robbins said:
“It is never too late for a happy childhood!”
On the other hand,
enlightened or easygoing oncologists will admit that hitting the body
with deadly radiation and/or extremely toxic medication is like
trying to drive out the devil with the Beelzebub. The patient's body
is turned into such a toxic environment that the (more or less)
targeted cancer-cells, presumably more sensitive towards
radiation/chemo than the rest, will hopefully die five minutes before
the rest of you goes. This is the time when your oncologist has to be
there, to bring you back, to fix your failing immune-system before a
harmless bacteria has you for breakfast. This is the moment when
Western medicine does show how effective it is – they have
batteries of chemicals that will bring you back to life and keep you
there.
The therapeutic
claim of this grim procedure is, that this fragmented, not very well
performing body, will somehow find a way to reassemble itself –
this time without the cancer!
3.
SET AND SETTING
In the Sixties of
the last century, while still a professor at Harvard, Timothy Leary
introduced the importance of set and setting, when planning a
psychedelic excursion. “Set” stands for the current state of mind
of the experimenter, “Setting” describes the locality, the
environment where one intends to stay during the experiment.
The set:
--- understood as
mindset, does not demand a perfectly healthy body and mind, but
somebody stable enough, to withstand the temporary demontage of the
ego. You want to exclude people with suicidal tendencies, or ulterior
motives, like punishing somebody: “It serves my mother right when
my hands freeze, if she doesn't buy me gloves.”( Or like: “Look
everybody, I'm so desperate I take drugs!”)
Fritz Perls on
ego-death: “To die and to be reborn is not easy.”
The setting:
--- can come in many
varieties, natural environments like the forest or the desert, or a
pleasant house with art and music, with understanding friends, and
windows with sunsets...
For the relative
short time-span of a psychedelic trip all these suggestions are
relatively easy to arrange. If we want to apply these rules to the
time-span of a radiation/chemo therapy we will find that not many
people live in such supporting environments.
One explanation for
this problem is the compartmentalization of all the departments of a
hospital – they do have nutritionists, and psychological help, but
set and setting? There is no therapist that right from the beginning
will check your mental state, with which you will enter a therapy
that might bring you closer to death than you have ever been before.
People who just got a cancer diagnosis are usually not too happy, but
depressed, and/or guilt-ridden, because they think they are being
punished for something or other.
It has been proven
though, that a sunny, optimistic state of mind does not necessary
increase survival chances – miserable, angry, mean-spirited creeps
survive just as long as nice people.
There is of course
no department in the hospital that is obligated to create a
life-supporting environment for the patient. The hospitals themselves
are often trying hard to create a warm atmosphere by friendly colors
on the walls and pleasant paintings. Particularly when children get
cancer all stops are pulled. But for all one knows – they might be
living in a car and use the bathroom at McDonald's.
There certainly is
no budget to provide services like intensive counseling and decent
housing for cancer patients, but in an ideal world, it surly would
improve the effectiveness of any therapy.
But to be clear,
there is no proof that an ideal set and setting ever saved one
cancer-patients life, but we can tell with certainty that to neglect
set and setting will decrease one's chances of survival.
4.
FRAGMENTATION AND DEFRAGGING
If we ignore the
length of chemo and radiation, compared to the time a psychedelic
trip takes, we find parallels. In both cases the perception is
regulated – either up or down, either pure energy is blasting
through your synapses, and you feel dramatically alive -- or you feel
the absence of life energy, which now manifests as a reluctant drip,
just enough to keep you breathing, but not enough to fight off the
intensity of pain.
As much as the
cancer patient would like to ignore the symptoms of the therapy and
distract himself, it is very important to observe all these slow
changes closely. How they build up, and how they climax close to the
end of the therapy. Even every pain, particularly if it is a new
pain, should be observed and only helped with a painkiller, when it
becomes unbearable. Every new pain is a message from a body that
wants your attention. So, like a good detective, you will follow the
pain – and maybe find one of the hidden causes of your illness.
During the time of
the build-up, towards the maximal accumulated dose of radiation or
chemo-therapy, the body is slowly regulated down, all systems seem to
run on empty. Not only the immune system is down – hormones,
glands – even the saliva glands are on unpaid leave. But glands
play an important role in your psychological state. The will to live,
the optimism, the desire to exist, are impacted. To not be
depressed under these circumstances would indicate a diminished
emotional capacity.
Another, easily
overlooked symptom is the breakdown of the synchronization between
the different organs. This might be because we know comparatively
little about the way organs communicate with each other. Some
communications are of a physical nature and seem to be easily
understood, like the production of saliva when you put food in your
mouth. Then when we look closer we realize that we still don't know
how it exactly works – how a stimulus – the food – creates an
electrical signal that, via several changes into biochemical messages
at the synapses, makes it's way to the appropriate part of your
nervous system, from where a signal returns that starts salivation.
I'm sure we do not understand every detail of this simple
communication.
Known, but little
understood, are the mysterious “Interstitial cells of Cajal”,
which are found in the gastric smooth muscles. They are the pacemaker
cells that generate slow waves, that we experience as peristalsis,
and we would not have much of a digestion if they were out of sync.
It takes some
courageous multidisciplinary scientists to explore, for example, two
neighboring organs and their function, and then find out how they are
communicating with each other.
And indeed, progress
is being made, often to the advantage of the corporations rather than
the patient. When scientists understood the concept of beta-blockers
the corporations realized that instead of treating ulcers with
antacids, they now had a tool to prevent the production of acid in
the first place. This works really well! The acid is reduced and the
ulcer can heal. The long term side effect is malnutrition because the
acid is necessary for a functional digestion.
It seems to me as if
we know a lot about the functions of each organ, but the subtle
directives that the organs exchange to work in sync, are not well
understood. Chemo and radiation appear to diminish this ability, and
are perceived by the patient as a fragmentation, as a body completely
out of sync with itself.
Here a fable by
Aesop that illustrates the situation:
The Belly and the
Members
ONE fine day it
occurred to the Members of the Body that they were doing all the work
and the Belly was having all the food. So they held a meeting, and
after a long discussion, decided to strike work till the Belly
consented to take its proper share of the work. So for a day or two,
the Hands refused to take the food, the Mouth refused to receive it,
and the Teeth had no work to do. But after a day or two the Members
began to find that they themselves were not in a very active
condition: the Hands could hardly move, and the Mouth was all parched
and dry, while the Legs were unable to support the rest. So thus they
found that even the Belly in its dull quiet way was doing necessary
work for the Body, and that all must work together or the Body will
go to pieces.
Another metaphor
would be to compare the body to an orchestra, where every instrument
has it's function and when everybody is in sync they can play
beautiful music. After being hit with the chemo/radiation wrecking
ball the musicians don't sound like much anymore, because they lost
not only their notes, but also their instruments, and their
conductor...
The physical
fragmentation increases slowly, over time, but unless one pays
attention, the symptoms can drown unnoticed in the various other
pains and irritations. Whoever is familiar with psychedelics –
particularly 5MEO will know how it feels when one is mentally
fragmented from one second to the next. That is the precious moment
when one hopes that all the parts are numbered and will later
relocate at their proper place.
Defragging is a
computer term, where fragmented parts of large files are distributed
all over the hard drive and under temporary suspension of activity,
will be reunited with each other for a more economic and efficient
access.
And that's how one
should begin therapy, with the knowledge that all will fall apart,
but it will rearrange itself and reunite, because that was the
intention in the first place.
As John Lilly once
said: “There are no mistakes, there are only correctable errors.”
5.
WHERE THE BOTTOM LINE ENDS...
There will come the
time when you hit rock-bottom. The (side ) effects will hit you as
hard as they ever will, and your resilience will be at an all time
low. You're occupying a disgusting piece of meat that doesn't even
look like you anymore and you can't find any justification to
continue this painful existence any longer. No gland is still active
that could produce a molecule needed to see something positive in
this perverse test. You think of the doctors, the nurses, of all the
people that have invested in you, and the guilt of betraying them
weighs heavy, but do you need to compromise... even if it's your life
and death?
It is amazing when
you realize that people will clearly miss you – how important this
suddenly has become.
Because everything,
everything becomes meaningful and beautiful when you have to accept
that this might be your last time... and maybe this is all there is,
for you...
My life lasted many
years, and maybe it is time to throw the towel, and make room... Why
be greedy?
But then again,
there are so many unfinished things, so many uncorrected mistakes, so
many people, who need to know that you love them. And why me, why do
I have to be the sick one, why do I need to be taken care of? What
have I done to be punished this way? Why do I hurt the ones I love?
You don't just
question authority, you question everything!
So I got cancer, a
disease without reliable cure, then, like many others I lost my job,
then I lost my girlfriend of 18 years. What else do I need to lose to
understand I'm not welcome anymore?
---------------------- IT'S JUST SO HARD TO SAY GOODBYE!
I've gotten used to
this little planet, crammed full of life, in all shapes and forms –
so unique in the large emptiness of outer-space. From this far away
even pain seems attractive, compared with the freezing dead
nothingness of the empty space between the stars.
Now, somewhere deep
inside, a decision will be made: are you going to die along with your
cancer, or will you choose a new life without? Sings King Crimson:
it's
alright, the rumble in your ears
it's alright to feel a little
fear
an' don't fight it, it's over your head
it's alright, you
wake up in your bed...
“You wake up in your bed!” That is of course the
deciding factor. We have to understand that like after any other
psychedelic journey – you will wake up in your bed!
If you don't wake up in your bed, you could be anywhere and you
might be – dead!
But if you wake up in your bed, the healing can begin. Once your
cancer understands that he can not demand anything anymore from you
and your body – it rolls over and dies... or maybe it talks to you
like HAL in 2001 when it is being switched off:
HAL: “Look Dave, I can see you're really upset about this. I
honestly think you ought to sit down calmly, take a stress pill, and
think things over.”
HAL has to go, just like any other occupying force, if it is your
own private Al Qaeda in the prostate, or an isle of plastic-objects
floating in the middle of the pacific...
Once the exorcism is proceeding, the damaged parts of your body need
to be reconstructed from the original code, and you will get younger
every day, until you reach your original age … and as disappointing
as it feels at the time, “No, you're not getting any younger any
more.!”...but there you are, you survived!
Remember, a certain amount of people have to survive to prove the
statisticians right! Even if you have just a 20% survival chance –
twenty of a hundred will live – and that is the group you want to
be in!
6.
...YOU WAKE UP IN YOUR BED!
Once the radiation/chemo climax is
over, you are still alive, and you're slowly noticing positive
changes, like gaining strength – you breathe again, you eat, you
take a walk, you remember how enjoyable simple activities used to be.
Was it all just a bad dream? A horrific nightmare, that is finally
over, and now you can go back to the routines of your life? That
would be a dangerous mistake! Ignorance is not bliss, but kills
many, who believe it is now safe, to hide one's head in the sand.
You just have to accept that once you have had cancer, you are
marked for the rest of your life. The cancer diagnosis leaves a scar
to remind us how fragile the state of health is and gives us a solid
motivation to observe the body closely -- at all times!
You see, when other people have a headache they say: “I hope I'm
not getting a flu.” When cancer-patients have a headache, they hope
they don't have a brain tumor. This is understandable, but is only
helpful insofar it makes you go to all the tests, which most people
like to avoid. Nobody wants to be reminded permanently how quickly a
biopsy can change a life.
To sum it all up: There is no evidence that the attitude of the
patient has any influence on the outcome of the therapy – there are
no immortality-brownies for correct behavior!
But it is your last dance, or if you prefer, your last battle –
You should give it all you have, because there might be an eternity
waiting for you to regret all the missed opportunities...
Just like a psychedelic trip, or a vision-quest, this is entirely
for you, to learn something only you need to know. Instead of your
mind disintegrating – now it is your body falling apart, and you
want to have a responsible oncologist on your side, because you might
just get too close to physical death, and need somebody quickly, who
has the whole instrumentarium of modern medicine at his disposal, to
bring you back.
Because you will fall apart, and and then it will all come together,
and you should reinstall the body you inhabited before. Why should
that not work?
Because one thing you are not: You are not a victim! Like a samurai
you have to experience the closeness of death as exhilarating, as
inspiring. That can be difficult, particularly when you don't feel
like it, when it is forced on you! You might have to dig up the
emergency-samurai to help you cut through the BS, and activate your
pet-vanity to look good while you fight for your life...
And if all this doesn't work – send a letter of complaint to:
Santa Claus, North Pole.
7.
WHAT NOW?
While I wrote this, I went through
five weeks of radiation/chemo and had almost two months to recover.
My current state is relatively pain-free, with spontaneous mornings
when everything smells like chemo and my bones and joints hurt like I
did a marathon the previous day. Mostly I'm tired for no reason, and
my ability to concentrate is not up to snuff – I would say I'm 50%
of what I'm used to be.
Besides daily physical exercise, I take Reishi mushroom extract and
lately, while researching the aging of cells, and the immortality of
cancer cells, I found information about the Reishi-mushroom,
“Ganoderma Lucidum”. It seems like the mushroom inhibits the
activity of telomerase, the enzyme that allows cancer cells to
replicate forever. Sadly, even though Reishi is an edible mushroom,
without critical side-effects, most of the studies are done in vitro
or with mice. Nevertheless, I am surprised how many mushroom/cancer
studies have been conducted since I complained 2008 in my “Medical
Mushroom” article about the lack of interest in such a promising
topic.
There are also a lot of news about marihuana, different alkaloids
find spokespeople. Cannabidiol seems to gain popularity, because it
contains so little THC that it does not get you stoned. For some
people, unfamiliar with THC this might be a good solution. It
nevertheless reminds me of Tim Leary, who loved to make fun of
pharmaceutical companies by pointing out “how many millions they
spent to find a painkiller that doesn't get you high.”
...and in spite of all the genius and effort that is put into
cancer research – the prophylaxis is still medical mushrooms and
Cannabis. So I'll end with the Ganeshian Prayer:
“Dear God, if there is a God,
help me, if you can help me.”
----------------------------------------------------------------------------------
Appendix:
UCLA:
Understanding
Brachytherapy
http://radonc.ucla.edu/site.cfm?id=425
http://radonc.ucla.edu/site.cfm?id=424
KONING CC, BLANK LE,
KOEDOODER C, VAN OS RM, VAN DE KAR M, JANSEN E, BATTERMANN JJ,
BEIJERT M, GERNAAT C, VAN HERPEN KA, HOEKSTRA C, HORENBLAS S, JOBSEN
JJ, KROL AD, LYBEERT ML, VAN ONNA IE, PELGER RC, POORTMANS P, POS FJ,
VAN DER STEEN-BANASIK E, SLOT A, VISSER A, PIETERS BR.
Brachytherapy after
external beam radiotherapy and limited surgery preserves bladders for
patients with solitary pT1-pT3 bladder tumors.
http://www.ncbi.nlm.nih.gov/pubmed/22718135
THOMAS DJ, ROBERTS JT,
HALL RR, READING J.
Radical transurethral
resection and chemotherapy in the treatment of muscle-invasive
bladder cancer: a long-term follow-up.
http://www.ncbi.nlm.nih.gov/pubmed/10210567?dopt=Abstract
IDO HARTOGSOHN
The American Trip: Set, Setting, and
Psychedelics in 20th Century Psychology
http://www.maps.org/news-letters/v23n1/v23n1_p6-9.pdf
Interstitial cell of
Cajal
http://en.wikipedia.org/wiki/Interstitial_cell_of_Cajal
JAMES
C. COYNE MICHAEL STEFANEK STEVEN C. PALMER
Psychotherapy and
Survival in Cancer: The Conflict Between Hope and Evidence
http://dcscience.net/coyne-psych-bul-07.pdf
YUEN JW, GOHEL MD, AU
DW
Telomerase-associated
apoptotic events by mushroom ganoderma lucidum on premalignant human
urothelial cells.
http://www.ncbi.nlm.nih.gov/pubmed/18444142
