Wednesday, January 22, 2014

THE DEADLINE IS INTERNAL!


Last year's last blog ended like this: “...and, naturally, I will keep painting and animating and writing until they 'Peel My Cold Dead Fingers From Around My Mouse...'”
Particularly from Germany I got worried responses, like I was going to roll over and die. I was, of course, joking – I quoted the late Charlton Heston from a speech he held at the National Rifle Association – I just exchanged the word “gun” with my tool: the “mouse”.
No, I'm definitely not rolling over to die! That will happen anyway -- some day, but I have no power of decision over that matter. (As far as I know.)
The beginning of 2013 was everything but enticing: I was diagnosed with a returning bladder cancer, this time in a more dangerous variation – as muscle invasive. And, for a double punch, we had to move, because the house owners had miscalculated their finances.
I had the unbelievable luck to be a patient of some of the smartest and most generous doctors I ever met. So instead of getting a radical cystectomy, which still is the standard treatment, I happened to be one of the first people to experience the latest refinement in HDR Brachytherapy, applied to the bladder. It was explained to me that this therapy was only practiced in three places in America and that UCLA Radiation was one of them. I felt very lucky!
And lo and behold: The therapy worked, half a year later we can tell that there is no muscle invasive cancer left!
Too bad another, superficial cancer would use the opportunity to settle at the dome of my bladder, which was not planned for. So instead of starting the new year with a clean diagnosis, it will be another unpleasant struggle to get to a point where I'm healthy enough to make plans.
I have so many things to do, that even at the moment, unemployed and without deadlines, I hardly manage to get things done – too little time – even without a deadline. (No pun intended!)
The Deadline is Internal!
Last year I found myself confronted with a headline: “34 Medical Studies Proving Cannabis Cures Cancer!” I will put them into an appendix below.
I checked all 34 studies, they are all very interesting and informative, but don't live up to the headline. These studies are mostly “in vitro” or with mice and rats. There is just one study with humans, a pilot study of 12 people with brain-cancer. It's from 2006, all patients died eventually, because they used a group of terminal patients, all had failed standard therapy before. But the procedure was safe and seemed to slow down tumor growth at times.
All this sounds very promising, except for the endless tests and studies that the AMA and FDA demand, which will slow down progress, and it might be too late for me.
Safety and toxicity should not be a problem with cannabis – there are a few thousand years of usage without major accidents, but we also have to take into account that this is a very different world now. We are using chemicals, compounds that have just been invented, particularly to cure cancer, and we don't know what kind of unexpected synergistic effect they might have with cannabis.
Even with something as safe as cannabis, I would suggest utmost caution, because when you are the one that has the cancer – errors might result in your death.
On the other hand – doing nothing is not an option – and whatever it is you do -- or not do – might result in death anyway... So there...
But Cannabis oil is expensive if you take the recommended doses for cancer, 60 grams for nine weeks – about $5000!
Then, last day of the year, a friend appeared like an angel out of Knowhere and offered to provide me with the necessary substance. I was elated and could not believe my luck, which did not last that long... My friend's friend died, and for now everything that had to do with oil was postponed until some other time. Understandably.
Yesterday I sent the letter below to my doctors.
I find myself in the unique situation of somebody who just was the recipient of a great present where the latest and smartest technology was used with impeccable precision, and endless rechecks,
to make sure I would still have a bladder at the end of this, but no more cancer. And they did it!
It was my miserable bladder that already had to start on the next wave of attacks. To my advantage – the diagnosis is early, but what in oncology nobody wants to do is to understage cancer.
They will shoot with cannons at sparrows! (Not in my case, but they do – I've seen cannons up there, definitely cannons, big white cannons!)
To sum it up – I'm feeling better every day. There still is a long list of lingering effects from chemo and radiation, but mostly-- I'm not in permanent pain anymore!
Still, I will go to the doctor and say: “Ok, doc, fill me up! I was feeling way too good – I need a bit of realistic pain, to be reminded who I am!”
“But please be gentle, it is my third time only.”

This is my letter to my fantastic doctors:

Indeed the miracle has happened, we lost the muscle-invasive cancer, without removing my bladder!
That in itself is a success that goes far beyond what the standard therapy could have promised me.
So I want to thank everybody again for the excellent work and care that I received.
But it's too early to celebrate, because of this nasty little carcinoma in situ at the top of my bladder, which was just waiting for the holidays to be over, and is now busy turning into an even nastier, muscle-invasive version. Dr. Chamie, my urologist and head of UCLA urology, suggested the standard treatment of 6 weekly installations of BCG. I had two such treatments after bladder resections – the first time was tolerable, but did not get rid of the cancer – the second time it ruined my bladder to a point that I had to pee every half hour. For almost a year my bladder was chronically inflamed, as was my urethra, and my radius of activity was reduced to house and garden, everything else needed to be meticulously planned, so I knew there would be bathroom stops every half hour. To avoid this disability I have searched for an alternative to BCG, and below I will list what I found or know about. Sadly most of these suggestions are either not yet legal in the US, or they don't have randomized human studies available for a little more credibility.
But, one can dream! – And listing the impossible, might lead to a therapy that is possible within the legal space of evidence based medicine in America.
After I was diagnosed with bladder cancer in 2007 a Swiss MD, who was advising me, pointed me towards a website of a Dr. Thiel, who was the head of urology in the German town of Heilbronn.
http://www.iontophorese-tumortherapie.de/iontophorese.htm
Dr. Thiel retired years ago and is now 84, but I have years of email correspondence and several notebooks with details of his method. He does not claim to have a cure for bladder cancer, but his first question after the tumor was removed from my bladder: “What are they doing for the prophylaxis?” Then I did not know that dealing with bladder cancer means mainly to prevent a recurrence. His “iontophoretic tumor-therapy” is about prevention, assuming that visible tumors have been surgically removed. Back in 2007 “iontophoretic” was a new word for me, even though the mechanism of moving substances by applying an electric current was familiar to me.
Since then I found a glut of studies about the “iontophoretic” or “electromotive” administration of drugs. (They already have an abbreviation for it: EMDA for Electro Motive Drug Administration.)
I think Dr. Thiel was the first one who applied the iontophoretic administration to bladder cancer, because only an electric charge will push the medicine through an impermeable bladder-wall into the muscle, where the future tumors lurk. Dr. Thiel has been largely ignored, but in the meantime in Italy – Di Stasi et al and Rossi et al have used EMDA to force Mitomycin C into the bladder muscle. I quote:

“BCG treatments followed by a novel delivery system using electromotively delivered Mitomycin C are showing some of the most surprising recurrence-free response rates ever seen in superficial bladder cancer treatments.

Sequential BCG and electromotive mitomycin (EMDA) versus BCG alone:

disease-free interval 69 months vs. 21 months
recurrence rates:
41.9% vs 57.9

progression
9.3% vs 21.9%
overall mortality
21.5% vs 32.4%
disease-specific mortality
5.6% vs 16.2%
Side-effects were mainly localised to the bladder.
1

Lead investigator SM Di Stasi reports that after ten years of using this technique, systemic side effects are not a problem.”(Sequential BCG and electromotive mitomycin versus BCG alone for high-risk superficial bladder cancer: a randomised controlled trial. * Di Stasi SM, * Giannantoni A, * Giurioli A, * Valenti M, * Zampa G, * Storti L, * Attisani F, * De Carolis A, * Capelli G, * Vespasiani G, * Stephen RL. Department of Surgery/Urology, Tor Vergata University, Rome, Italy. Lancet Oncol. 2006 Jan;7(1):43-51. PMID: 16389183 )
These numbers are very impressive, if they are correct! (The recurrence time tripled!)
In Italy the company “Physion” is selling the necessary equipment and they have a flashy catalog like they are advertising a spa. See pic.


So far EMDA seems to be legally approved in Italy, Austria, Sweden, Germany, and lately the United Kingdom.
But, back to Dr. Thiel:
The second part of his method consists of the cancer killing substance he advocates in the context of iontophoresis. It is a mixture of 50% DMSO and 50% Proflavine hydrochloride. Dr. Thiel claims that Proflavine selectively kills only cancer cells. It seems that membranes that become permeable by application of an electric current allow the Proflavine to be deeply pushed into the muscle where it will destroy the DNA of every cell in mitosis. According to Dr. Thiel this process only needs to be performed once for a successful prophylaxis!
I have researched Proflavine, because in the seventies it had the odium of being carcinogenic, but there are few studies about the cytotoxicity of proflavine and related compounds indicating that it's not carcinogenic in the dose requested.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987641/
As Dr. Thiel told me in his last email that his therapy requires Proflavine “in the lower milligrams” and is completely safe.
But he warned me about my selfish crusade to get a treatment that will cure at least this cancer. He predicted bruised egos, barking dogmas, and repeated collisions with the argument that is part of the history of medicine: “It doesn't work, because if it worked – somebody would be doing it!”
Hard to argue with that kind of sincerity. On the other hand, if that was how medicine works, we would still try to cure gonorrhea with colloid silver...and die from numerous bacterial infections...etc...
Dr. Thiel also doubted that the electromotive administration of Mitomycin C would do a good job penetrating the bladder wall, because the solvent is moving the Mitomycin C or BCG electro-motively along, but because the substance itself is not ionized, it does not allow an iontophoretic administration.
This, though, is essential for Dr. Thiel's treatment.
Lately it seems like the medical establishment is slowly catching up, but it probably is a little too slow for my cancer. I certainly do not expect to have Dr. Thiel's “iontophoretic tumor-therapy” offered to me in the near future. – Nevertheless, in Canada they offer the (above mentioned) BCG-EMDA/Mitomycin C treatment. It's legal, but obviously not paid for by the insurance...
It's $ 20 000 a pop!

So what can be done in America?

Mostly BCG! (It is still more promising than Mitomycin C, or Gemcitabine!)

Then there is Ofloxacin to deal with the adverse effects of BCG, but it also presents a set of undesirable side effects.
http://www.ncbi.nlm.nih.gov/pubmed/16890660

The combined thermo-chemotherapy for recurrent bladder cancer after bacillus Calmette-Guerin also seems to increase a positive outcome by a small percentage, depending on the individual case.

Conclusion: I know that all doctors are in agreement about the use of BCG ("the Gold-Standard"). I understand -- but having had very unpleasant experiences with BCG – I would either like to replace it with something equally potent, or find a way to reduce the BCG damage as much as possible. I also understand that the fact that BCG turned my bladder into raw meat, is not necessarily an unwanted side effect, but that that is the effect! When the bladder finally heals, it will hopefully be a reconstruction without the cancer. But I also remember my urologist's complete helplessness, in observing my mutilated bladder, with nothing to offer but "Hope". (And the snooty comment of my second opinion MD about me being a “bladder-cripple”. That was certainly true, but unless there is a treatment for this condition – it's not funny.)
Then, what else is there? Medical mushrooms, Zhuling or Reishi, are supposedly having the best results with bladder cancer. I have taken those, but one also needs to take a break once in a while, and I have to concede that my recurrence happened, when I took a break from the mushrooms, and at the same time fell into the doughnut hole with dronabinol. I could not afford the medicament without insurance.
On the subject of dronabinol: Cannabis oil has an almost mystical reputation as a cancer killer.
There is some very convincing evidence that cannabis oil works for all kinds of epilepsy, and there is an overwhelming amount of testimonials, of people who got “cured” from cancer.
However there are no studies to my knowledge that say anything about possible synergistic effects of BCG and Cannabis oil.
So by grasping for the stars, I hope I can find the best available treatment here and now, because I don't know how to live through another year of house arrest by my bladder, and a chronic urethritis that makes it impossible to get a job, and besides – it killed my social life, and has emptied my bank account.
...and that's all for now, soon we will talk, I just hope I have explained my situation and my hopes adequately.
Greetings Brummbaer Von Crenshaw




34 Medical Studies Proving Cannabis Cures Cancer!

The Claims:

Brain Cancer
http://www.nature.com/bjc/journal/v95/n2/abs/6603236a.html Guzman Pilot
http://www.ncbi.nlm.nih.gov/pubmed/11479216 Rats
http://www.jneurosci.org/content/21/17/6475.abstract Rats
http://jpet.aspetjournals.org/content/308/3/838.abstract Mice
http://mct.aacrjournals.org/content/10/1/90.abstract In vitro... or?
Cures Mouth and Throat Cancer
http://www.ncbi.nlm.nih.gov/pubmed/20516734 In vitro
Cures Breast Cancer
http://www.ncbi.nlm.nih.gov/pubmed/20859676 mice
http://www.ncbi.nlm.nih.gov/pubmed/18025276 mouse model
http://www.ncbi.nlm.nih.gov/pubmed/21915267 mouse model
http://jpet.aspetjournals.org/content/early/2006/05/25/jpet.106.105247.full.pdf+html mice and rats
http://www.molecular-cancer.com/content/9/1/196 MMTV-neu mouse
http://www.ncbi.nlm.nih.gov/pubmed/22776349 mouse models
http://www.pnas.org/content/95/14/8375.full.pdf+html in vitro
Cures Lung Cancer
http://www.ncbi.nlm.nih.gov/pubmed/22198381?dopt=Abstract in vitro and Athymic nude mice
http://www.ncbi.nlm.nih.gov/pubmed/21097714?dopt=Abstract in vitro and mice
http://www.nature.com/onc/journal/v27/n3/abs/1210641a.html in vitro and mice
Cures Uterine, Testicular, and Pancreatic Cancers
http://www.cancer.gov/cancertopics/pdq/cam/cannabis/healthprofessional/page4 mice rats
http://cancerres.aacrjournals.org/content/66/13/6748.abstract in vitro
Cures Prostate Cancer
http://www.ncbi.nlm.nih.gov/pubmed/12746841?dopt=Abstract in vitro
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3339795/?tool=pubmed in vitro + pain
http://www.ncbi.nlm.nih.gov/pubmed/22594963 in vitro
Cures Colorectal Cancer
http://www.ncbi.nlm.nih.gov/pubmed/22231745 in vitro
 Cures Ovarian Cancer
http://www.aacrmeetingabstracts.org/cgi/content/abstract/2006/1/1084 hamsters
Curse Blood Cancer
http://www.ncbi.nlm.nih.gov/pubmed/12091357 in vitro and mice
http://www.ncbi.nlm.nih.gov/pubmed/16908594 in vitro
http://onlinelibrary.wiley.com/doi/10.1002/ijc.23584/abstract in vitro and mice
http://molpharm.aspetjournals.org/content/70/5/1612.abstract in vitro
Cures Skin Cancer
http://www.ncbi.nlm.nih.gov/pubmed/12511587 in vitro and mice
Cures Liver Cancer
http://www.ncbi.nlm.nih.gov/pubmed/21475304 in vitro and mice
Cures Biliary Tract Cancer
http://www.ncbi.nlm.nih.gov/pubmed/19916793 in vitro ?
Cures Bladder Cancer
http://www.medscape.com/viewarticle/803983 statistics of 82,050 human marihuana- and tobacco-smokers
Cures Cancer in General
http://www.ncbi.nlm.nih.gov/pubmed/12514108 in vitro and mice
http://www.ncbi.nlm.nih.gov/pubmed/15313899 in vitro and mice
http://www.ncbi.nlm.nih.gov/pubmed/15313899 in vitro and mice


Sunday, December 22, 2013

Another maybe...


   I guess I was lucky! I did not have to wait for Friday the13th to get the bad news. I already got it on Thursday the 12th.
   It also wasn't entirely bad – in fact: the therapy has worked, the muscle invasive cancer has disappeared. So I should be happy because the cancer I got rid of is the type that can unexpectedly lead to a quick death. But a new cancer at a different location showed up in the biopsies. It is what is called “superficial bladder cancer” and will, untreated, turn into a more deadly variety.
   So, no clean bill of health, no time to recover physically or financially.
   Dr, Chamie, the urologist in charge, was rather cheerful because, in his eyes we had won, defeated the muscle-invasive cancer and now all we needed to do was to get rid of this pesky superficial intruder. He suggested a course with BCG, the tuberculosis vaccine, that works by putting your immune system in high gear, hoping that it will kill any cancer cells that are left after surgery.       Statistically it decreases the chances of a recurrence by 60%, and it is commonly done. I don't think Dr. Chamie knew that I had two treatments with BCG already. The first treatment did not work well enough, the cancer returned, and the second time the side effects were so grave that it was clear that we should not repeat this.
   In 2008 I wrote about medical mushrooms and bladder cancer.:

   I found three studies with control groups comparing the Zhuling mushroom in it’s effectiveness for a bladder-cancer prophylaxis with BCG, Mitomycin C and others. The Zhuling mushroom was infinitesimally more effective than even BCG, which itself has the best results among all the other maintenance-therapies. One of the studies says: “The effect of Zhuling was similar to that intravesical BCG. Zhuling was cheaper and convenient in usage, and no side effects.”

   These studies were conducted at the “General Hospital of Jian Unit of People's Liberation Army” in China between 1991 and 1999. The largest group studied, consisted of 313 people, which isn’t a huge group, but to be considered.




   When I read about this mushroom that was equally potent as BCG, but without side-effects, again, I expected to find dozens of studies trying to find the principle behind this achievement, but there were none!!!

   Since 2008 a few more studies on bladder cancer and medical mushrooms exist, which seem to support the anecdotal evidence. For example: In Vitro, in Hong Kong:

http://www.ncbi.nlm.nih.gov/pubmed/18444142

   My own anecdotal evidence for the healing power of mushrooms stems from the time when the BCG treatment had left my bladder in a pitiful state. It was permanently inflamed, and I had to pee every 30 minutes with a painful chronic urethritis. It lasted over a year. I hardly ever got decent sleep and I was pretty hopeless. Then after drinking reishi tea (reishi-extract), within weeks my bladder normalized. That may just be coincidence and I treat it as such, but I'm looking at all the other coincidences and I'm sure there is something there.
   I used to buy zhuling in bulk -- It is affordable this way. I would simmer zhuling tea in an old Chinese ceramic teapot. Now I have run out of zhuling. It seems difficult to get it currently now I take reishi extract.
   More interesting, and lately all over the media – the cannabis products! I have been smoking cannabis since I was 18. Then, people did not worry about the masses of tobacco that went into a hashish-joint – they were worried about the few black clumps of resin. Ha Ha!
   When in 2003 I was first diagnosed with squamous head and neck cancer I stopped smoking anything. Nevertheless, when several months into chemo and radiation, one day I came home from a treatment and was in such pain and lethargy that I decided to make an exception, smoke some grass with my vaporizer, go to bed, and watch TV. I did. 5 minutes later I had the urge to get up, and next, I sat at the computer, typing away. The cannabis, almost like a pain-seeking missile, had not only deleted the pain I was aware of – it also got rid of pains that I was so used to I wouldn't notice them anymore. Now I noticed them, because they were gone. I never made a big thing of it because who would believe a lifelong marihuana- and hashish-smoker...
   It is just utterly amazing how well it worked, since I had only bad experiences smoking cannabis to deal with acute pain. I would inhale a joint and the toothache would not disappear, but rather get more intensive -- now in screaming psychedelic colors!
   But with chronic pain – unbelievable!
   On the other hand, cannabis and cancer are lately much studied and reported, but there still is no large double blind study on humans even though we find many studies in vitro, with the standard oncomouse, rats, etc... And hours of testimonials. Sometimes I wonder if there is a magic number that determines how many people have to tell you they got healed before a placebo effect sets in.
   As I understand: According to Rick Simpson, the inventor and spokesperson for “Phoenix tears”,
one needs 60 grams of oil and nine weeks to take it. But many years of cancer made me lose my job and bankrupted me. Social Security barely pays for my rent and I'm living by the mercy of others.
   So, there is a problem!
   But Christmas is coming and people are busy with their own lives, and not much can be done before the new year. So I will spend the holidays with my computer, looking for a cure for my cancer.
   Right now: I'm alive, everything else pales, when your life is on line.
   ...and, naturally, I will keep painting and animating and writing until they “Peel My Cold Dead Fingers From Around My Mouse...”

I guess I was lucky! I did not have to wait for Friday the13th to get the bad news. I already got it on Thursday the 12th.

It also wasn't entirely bad – in fact: the therapy has worked, the muscle invasive cancer has disappeared. So I should be happy because the cancer I got rid of is the type that can unexpectedly lead to quick death. But a new cancer at a different location showed up in the biopsies. It is what is called “superficial bladder cancer” and will, untreated, turn into a more deadly variety.

So, no clean bill of health, no time to recover physically or financially.

Dr, Chamie, the urologist in charge, was rather cheerful because, in his eyes we had won, defeated the muscle-invasive cancer and now all we needed to do was to get rid of this pesky superficial intruder. He suggested a course with BCG, the tuberculosis vaccine, that works by putting your immune system in high gear, hoping that it will kill any cancer cells that are left after surgery. Statistically it decreases the chances of a recurrence by 60%, and it is commonly done. I don't think Dr. Chamie knew that I had two treatments with BCG already. The first treatment did not work well enough, the cancer returned, and the second time the side effects were so grave that it was clear that we should not repeat this.

In 2008 I wrote about medical mushrooms and bladder cancer.:

I found three studies with control groups comparing the Zhuling mushroom in it’s effectiveness for a bladder-cancer prophylaxis with BCG, Mitomycin C and others. The Zhuling mushroom was infinitesimally more effective than even BCG, which itself has the best results among all the other maintenance-therapies. One of the studies says: “The effect of Zhuling was similar to that intravesical BCG. Zhuling was cheaper and convenient in usage, and no side effects.”

These studies were conducted at the “General Hospital of Jian Unit of People's Liberation Army” in China between 1991 and 1999. The largest group studied, consisted of 313 people, which isn’t a huge group, but to be considered.


 






When I read about this mushroom that was equally potent as BCG, but without side-effects, again, I expected to find dozens of studies trying to find the principle behind this achievement, but there were none!!!



Since 2008 a few more studies on bladder cancer and medical mushrooms exist, which seem to support the anecdotal evidence. For example: In Vitro, in Hong Kong:






My own anecdotal evidence for the healing power of mushrooms stems from the time when the BCG treatment had left my bladder in a pitiful state. It was permanently inflamed, and I had to pee every 30 minutes with a painful chronic urethritis. It lasted over a year. I hardly ever got decent sleep and I was pretty hopeless. Then after drinking reishi tea (reishi-extract), within weeks my bladder normalized. That may just be coincidence and I treat it as such, but I'm looking at all the other coincidences and I'm sure there is something there.

I used to buy zhuling in bulk -- It is affordable this way. I would simmer zhuling tea in an old Chinese ceramic teapot. Now I have run out of zhuling. It seems difficult to get it currently now I take reishi extract.

More interesting, and lately all over the media – the cannabis products! I have been smoking cannabis since I was 18. Then, people did not worry about the masses of tobacco that went into a hashish-joint – they were worried about the few black clumps of resin. Ha Ha!

When in 2003 I was first diagnosed with squamous head and neck cancer I stopped smoking anything. Nevertheless, when several months into chemo and radiation, one day I came home from a treatment and was in such pain and lethargy that I decided to make an exception, smoke some grass with my vaporizer, go to bed, and watch TV. I did. 5 minutes later I had the urge to get up, and next, I sat at the computer, typing away. The cannabis, almost like a pain-seeking missile, had not only deleted the pain I was aware of – it also got rid of pains that I was so used to I wouldn't notice them anymore. Now I noticed them, because they were gone. I never made a big thing of it because who would believe a lifelong marihuana- and hashish-smoker...

It is just utterly amazing how well it worked, since I had only bad experiences smoking cannabis to deal with acute pain. I would inhale a joint and the toothache would not disappear, but rather get more intensive -- now in screaming psychedelic colors!

But with chronic pain – unbelievable!

On the other hand, cannabis and cancer are lately much studied and reported, but there still is no large double blind study on humans even though we find many studies in vitro, with the standard oncomouse, rats, etc... And hours of testimonials. Sometimes I wonder if there is a magic number that determines how many people have to tell you they got healed before a placebo effect sets in.

As I understand: According to Rick Simpson, the inventor and spokesperson for “Phoenix tears”,

one needs 60 grams of oil and nine weeks to take it. But many years of cancer made me lose my job and bankrupted me. Social Security barely pays for my rent and I'm living by the mercy of others.

So, there is a problem!

But Christmas is coming and people are busy with their own lives, and not much can be done before the new year. So I will spend the holidays with my computer, looking for a cure for my cancer.

Right now: I'm alive, everything else pales, when your life is on line.

...and, naturally, I will keep painting and animating and writing until they “Peel My Cold Dead Fingers From Around My Mouse...”

Monday, December 2, 2013

YES NO MAYBE

   This was supposed to be the cystoscopy that should have told me if the treatment did work or not.
   I did not want to see any tumors or any other irregularities in my bladder. Because if there is cancer – all bets are off, I will have lost and I will have to figure out how to retreat gracefully.
   The procedure was done in the office of my urologist Dr. Ramin, where, without anesthesia, I can watch the inside of my bladder, and since we did this already numerous times, I'm fairly familiar the environment. I was not happy with what I saw. There were two distinctive bumps under the mucosa.
   Not very big, but one looked like it was going to burst any second. Dr. Ramin scratched his head and said that it looked strange, not like cancer – maybe a benign cyst from the radiation? A biopsy needed to be done, but since one of the bumps looked so explosive that a lot of blood could be expected. I had biopsies done before – without anesthesia – it does hurt, but a cystoscopy is not much fun to begin with. So, to deal with the blood, and the pain a second cystoscopy had to be arranged.
   This was not a YES or a NO – it was a MAYBE! Which is a bummer anyway...
   Then the next day my radiologist Dr. Kamrava called, and he had a different take on this. Before the Brachy-radiation they had placed “Markers” in my abdomen, to more precisely target the suspect tissue. I thought these were little pieces of gold leaf or something similar, which can be placed in the body, and are always visible on x-rays etc... Working with markers has the advantage that you are aware of any movement or displacement of the marked tissue within the body, so, if necessary, the treatment can be adjusted.
   Now I found out that these markers were not what I thought they were. I was injected with something like a saline gel, that is commonly used in plastic surgery to inject under wrinkles or scar tissue. In my case it served to distance the bladder from other organs, to reduce the collateral damage of stray radiation. The use of the saline gel is not experimental – the particular procedure – the HDR Brachy-therapy for the bladder – on the other hand is! Dr. Kamrava was sure that what we saw were the markers, and since the method is so new – my urologist would not be able to recognize this.
   So, there is hope, and tomorrow after the MRI, I should know more.
   And the cysto next Thursday should provide a final result about the effectiveness of the procedure.
   Then I can, or cannot make plans for the next three month.
   In the meantime I am learning how to wait! Not very successful, I'm afraid -- because with all the training in my life – I should be world champion in the “patiently waiting” discipline.
   I'm not.

Sunday, October 13, 2013

CANCER THERAPY AS A PSYCHEDELIC JOURNEY

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 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.”


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