1. THE SIDEFFECTS OF RADIATION/CHEMO ARE ALTERED STATES
Monday, the 19th 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.”
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...
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...
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!
...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.
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.”
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.
THOMAS DJ, ROBERTS JT, HALL RR, READING J.
IDO HARTOGSOHNThe American Trip: Set, Setting, and Psychedelics in 20th Century Psychology
Interstitial cell of Cajalhttp://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
YUEN JW, GOHEL MD, AU DW
Telomerase-associated apoptotic events by mushroom ganoderma lucidum on premalignant human urothelial cells.