HOPE OR EVIDENCE?

   Lately I scanned an article about the benefits of an altruistic life style. The article claimed that altruistic people survived cancer at a greater rate than, I assume, a bunch of selfish patients. At the time I did not give it much attention because it seemed to be the usual Judeo/Christian propaganda – “Morally upright people are rewarded by God with good health...blah, bah.”

  Common sense and personal experience indicate this as a vicious fallacy.
  Not only have I been diagnosed with cancer, but now I also have to deal with a bunch of self-righteous smarty pants who suspect that there is something wrong with my psyche, my spirit, my mind, my karma! I obviously did something wrong, something really bad. I deserve the cancer!
   And to explain the cancer of young children, too young to accumulate bad karma – well, they were probably Nazis in their former incarnation!
   We do know that getting cancer is about as random as being hit by lightning, winning in the lotto or being run over by a car.
   There is nothing you can do to prevent cancer! Supposedly one in three people will get cancer during their lifetime, statistically.
   And we only have statistics, but they don't apply to specifically you, they apply to all people. If the estimated survival chance is 20% or 80%, it doesn't matter – as long as you manage to belong to the surviving group!
   I could not find the exact article mentioned. All I found was a study that was trying to determine if patients who participated in random controlled studies had altruistic motives. The study was inconclusive.
   Then I remembered, when in the seventies and eighties several cancer prone personality types were suggested. Particularly sad and hopeless are the personalities by Eysenck:
   Type A:
   “Briefly, the cancer-prone personality type deals with stress through loss of the loved' object, or frustrative non-reward by the loved object, with feelings of hopelessness, helplessness and depression, retains emotional closeness with withdrawing objects, shows a tendency to idealise the withdrawing objects, and represses overt emotional reactions.”
   In its vagueness this reminds me a bit too much of astrological charts – I instantly recognized myself as cancer-prone:
   ...loss of the loved object... hopelessness...depression...
   Of course, after you have been diagnosed with cancer these feelings might be justified.
   So the question remains: How much influence has the psyche on the evolution of cancer?
   Psychologists would like to believe -- a lot!
   But that is not so. A meta-study from 2004 “Psychotherapy and Survival in Cancer: The Conflict Between Hope and Evidence” by Coyne, Stefanek, and Palmer.
    The study starts:
   “The belief that psychological factors affect the progression of
cancer has become prevalent among the lay public and some
oncology professionals (Doan, Gray, & Davis, 1993; Lemon &
Edelman, 2003). An extension of this belief is that improvement in
psychological functioning can prolong the survival after a diagnosis
of cancer. Were this true, psychotherapy could not only benefit
mood and quality of life but increase life expectancy as well.”
   And it ends:
   “There is no good a priori reason to reject the assumption that
with appropriate tailoring to the demands of cancer and its treatment,
interventions that reduce prolonged or functionally impairing
distress in other contexts will benefit persons with cancer.
However, we are concerned that the necessary retreat from the
claim that all persons with cancer need or will benefit from formal
psychosocial interventions becomes more awkward and embarrassing
when it is accompanied by a delayed concession that such
interventions do not extend survival.”
http://dcscience.net/coyne-psych-bul-07.pdf
   So here we are again at the beginning. Isn't it reassuring – you can be a bastard, kill a million people and never get cancer, or a saint who is forsaken by his God.
   One in three people will get cancer, regardless who they are, what they think, where they come from and psychotherapy will not keep anyone alive – but maybe it helps dealing with life and death issues.
   And this is not to be underestimated.

 

I have a diploma, I can prove I did it!!!

The wonderful technicians and nurses of  the UCLA made this Diploma for me after five weeks of radiation/chemo.

My Battle with Cancer

   A short report from the trenches...
   My Surgeon General, Dr. Ramin, determined that my bladder had been occupied by a small group of terrorist cancer cells. The tumor had to be removed and Dr. Ramin did so with a surgical strike.       

   Even though the cancer was removed Dr. Ramin found in the neighborhood the presence of insurgent cancer cells, which had invaded my bladder muscle. This was serious, and Dr. Ramin suggested total extrication and destruction of the bladder and it's replacement with spare parts from my body.

   But there were alternatives: Nuclear and chemical warfare – weapons of mass destruction!
Starting with an extremely carefully targeted process, a nuclear strike on the proximity of the extricated tumor. It's a precisely guided attack and causes the least collateral damage to innocent cells.
   A chemical charge pinned down my pelvis to create a perfect target for the bombardment. Then tiny iridium-pellets at the end of an elastic steel rod were guided into the critical zone to have an effect -- not physically explosive like a nuclear bomb – more like a dirty bomb that burns its immediate surroundings with deadly radiation.
   Under the fearless leadership of Dr. Kamrava the team successfully finished the operation, and by now I needed a temporary cease-fire.
   After two weeks of recovery I was ready for the final strike that would get rid of all, so far undetected terror-cells in the besieged bladder.
   It started with a blast of very toxic chemicals, applied by Dr. Lieber, who intended to confuse and disorient the enemy, until he would be an easy target for the radiation, applied by Dr. Steinberg, the leader and coordinator of the radiation team.
   And this is where I am now, it's my last stand in the battle with cancer, and I veel be vicktorious! Jawohl! HURRA!

DOWN THE RABBITHOLE.

One pill makes you larger, and one pill makes you small
And the ones that mother gives you, don't do anything at all

Go ask Alice, when she's ten feet tall 
(Grace Slick, Jefferson Airplane)


   Now I had five weeks of external-beam/chemo ahead of me, and I didn't really feel physically stable enough to start without a break to recover from the Brachy-treatment, which after all, was harder on me than I expected. A week would do and I started watching the Zimmerman case on TV, and when the not guilty verdict came down, I – like many others -- scratched my head and mumbled: “Are they serious???“
   A short factoid: White elderly women are the group most afraid of becoming a victim of violence, while statistically they are the least likely to experience such. – Young black males, on the other side, are not that worried about becoming victims, which statistically of course they are!
   The last Sunday-afternoon before radiation Monday, Robin called from the road and said she heard on the radio that people were demonstrating at Martin Luther King Blvd and Crenshaw. That is about two minutes from were we live. Now I also heard the helicopters above and decided to see with my own eyes.
   Indeed, the crossing was blocked and policemen directed traffic. About a hundred to two hundred people, mostly but not entirely black, some with banners or with posters marched around in a circle, not quite sure how to go about it – these were not professional demonstrators. I watched a while and after some time they got organized and a whole group started to march North, where they later blocked the 10 Freeway. I decided to go home and hide from the helicopter noise.
   It was suggested that for the first two days of radiation/chemo I should not drive to the clinic myself. I was expected to show up by 8 AM to start the adjunct chemo. Two days of chemo at the beginning and two more after three weeks.
   The first day everything took longer than expected, but finally Dr. Lieber, my oncologist, was happy with everything, and I got my first dose of poison (Cisplatin) sneaked into my body between two bags of saline and an anti-nausea medicine. Then we had to rush over to the UCLA-complex for the administration of the external beam radiation. The process takes barely 15 minutes, but displayed a bit of Sci-Fi romanticism. In the middle of the room is a big white machine with different shaped heads and multiple joints that during the radiation circulate around you, and they look so big and heavy that before you lie down you just assume that they have to be safe. Because, if they would not follow the determined course they could easily squish you! Above the futuristic arrangement is a large ring of blue (mood)light, and nested within the blue light in the center, a black sky with glimmering LED stars that you can stare at while the machine does it's precise choreography around you and your troubled organ.
   When we came home the helicopters were back and there where demonstrations all over LA, specifically at Leimert Park – our neighborhood.
   Tuesday was very much a repetition of Monday – chemo and radiation were hitting me violently. Every part of my body that was not a 100% healthy hurt where it was the weakest.
   I first notice the cancer poisons when my visual refreshment rate goes down and I almost need to blink every time I want to receive a new image, and there is this ringing in my ears and I have trouble listening to higher frequencies. I will not dwell on more details – it just feels like I'm poisoned on a deep level where every molecule of the body has a painful electric halo that feels overloaded, circuits shrieking, shrill, and ready to explode; like a nuclear plant approaching meltdown!
   And I'm tired...
   ...and this is how it goes down the rabbit-hole: If you come out again you might be bigger, smaller, healthier, or dead. It is, of course, the job of your doctor to send you to the point where you almost die, and the body realizes that you can't afford a cancer sharing your resources – and just when you reach the point of no return – the medicine man brings you back...
Western medicine is really good at that!
   Dr. Lieber brought me back the last time, when I had about 300 white blood-cells left. They have fantastic stuff that brings your white blood-cells count up in no time – if it is applied in time
So I'm checking my temperature all the time, not to be caught by surprise, because it's a good hour's drive to the hospital and one never knows how capable I am to navigate L.A. traffic.
Meanwhile, I do enjoy food immensely because I don't know how long my taste-buds will work, and the memory of a half year of protein drinks (Vanilla, Banana, Strawberry) is not something I cherish.
Now, Monday-morning, I am ready to go in for the next round, and I'm enjoying the last hours of the short recovery that the radiation-less weekend provided.

A short report about my further adventures in the world of uncontrolled growth...

Brummbaer July 2013

FOUR DAYS IN THE BODYSHOP

I packed until the last moment, everything had to be in boxes or anything might happen to it on the way to our new home. Sunday noon was my cut-off time – starting preop with the usual unpleasant drinks to clean my bowels and to be safe in case somebody slips with his scalpel.

Today's joke: Something you don't want to hear in an operating room:
“Oooops!”
Robin continued packing.
Monday morning 4:45AM we arrived at the Ronald Reagan hospital where I should be ready for surgery by 7:30. Most of the time I filled out forms. Over and over...
I assume they are still working on streamlining the process, because redundancy for safety reasons is unavoidable, but too much redundancy creates drag and slows down the process. – Anyway. Suddenly, it was 7:30, I was in my hospital garb and was being introduced to half a dozen people, everybody wearing the unique costume for the event, the nurses, the Md's, the anesthesiologist, etc...
It was impossible to remember all their names, but the name tags were a great help... ...and three more times the same question: Was I allergic? No?
Then I was out, but still in a sitting position, while I heard people hammering and drilling at my spine. It was painless and all I remember is that it was obviously really difficult to get the right spot for the epidural.
Next I was in stirrups, still not really conscious, but aware that now the tubes were being implanted, presumably by Dr. Kamrava the head of the team. A little later I was aware enough to answer questions and now a mistake occurred that is hard to avoid: The question, of course, was: Between 1 and 10, what number is your pain? Mine was between 6 and 7, and when they increased the dose I did not respond. So they increased the dose again. I myself was not clear enough to differentiate between a really bad back-pain coinciding with the pain from the surgery. The epidural did nothing for my back-pain. So I  received twice the necessary dose, without anybody's negligence.
Dr. Demanes head of the Brachy department at UCLA was present, and since I was already pretty much under, they added a sedative and Dr. Demanes worked on me, for what seemed another three hours, tweaking the locations of the plastic-pipes.
Finally everybody was happy with the template between my legs and I was transported from “radiation” to the hospital. I was tied to the gurney, where I would stay for the next three days. I arrived around 8 in the evening at the Ronald Reagan Hospital, which was adjacent to UCLA radiation, but it was a complicated odyssey to get there.. The room was pleasant, with a great view of Westwood and the ocean. Even though I felt like a truck had ran over me, I nevertheless was terribly hungry. I was ready to eat and spend the rest of my consciousness vedging in front of the TV.
Mind you, I came with instructions: “Strict bed-rest! Turn every 2 hours.”
To eat I needed to be turned and the two nurses available, were willing, but had not the slightest idea how to go about it. They just thought, I – for whatever reason -- had an epidural and they tried to roll me on my side – not aware of the sensible template between my legs. Somehow they manipulated me into a 45 degree angle, that felt really wrong, even with an epidural. Five minutes later I touched something like a tree-trunk next to me on the gurney, which turned out to be my leg that was completely paralyzed and without any sense of touch. The left leg was perfectly fine, without pain and a limited range of movement due to the epidural. But the right leg was gone!
I freaked!
The night nurse did not seem too alarmed.
I asked for a doctor. The nurse nodded and left the room.
Too late I realized that he left the call-button out of my reach and now I was truly stuck to the gurney – helpless -- my absolute nightmare!
A good thing that Robin had called a short time ago and was on her way, so I knew I wouldn't be helpless too long.
Five minutes later I saw the nurse walking by. I yelled: “Where is the doctor?”
He looked at me and nodded: “Oh, yes, I will call the doctor right away!”
I didn't believe my ears.
Now Robin arrived and shortly thereafter a black nurse, who really knew her business. She very quickly determined that my epidural was very high and she also had the authority to turn the dose down and indeed, after two hours, feeling and motion started to return to my leg. In the meantime I had a doctor at “Pain Management” on the phone, who told me that this happened before, was rare and it all would be fine by tomorrow.
Which it was!
Mind you, I never saw a doctor all night – and I was in a hospital!
God bless the nurse, who knows her stuff!
They asked Robin if she wanted to stay, but with her workload – moving our”stuff”she needed to go home and rest.
Sleep didn't come easy to me that night – even though I was dead-tired – the weirdness of my body posture, the noises of the little pumps, turning on and of, and the pumps that served the leg compressors to avoid thromboses, left, right, left, right...but with the help of an Ambien I finally drifted into unconsciousness.
Day two:
I woke up, a bit disoriented but relatively painless – my leg was still lacking sensitivity but obviously recovering.
I ordered breakfast, but before it arrived I was whisked away to my first radiation treatment. Breakfast has to wait.
Two young men were responsible to deliver me at “Radiation” and gently warned me about every bump in the road. The gurney had no built-in suspension, but I had not much sensation in my pelvis anyway.
The radiation team consisted of two radiation technicians, who we shall call Tom and Al, and a young Asian nurse, with round glasses, a geometric haircut, and a pretty face.
Tom is an old hand at this and has years of Brachy behind him, a matter of fact attitude, like someone who knows what he's doing. Al was a little older and asked me if I had any musical preferences for the time in the radiation room. I didn't.
Meanwhile Tom had conducted a Ct-scan of my abdomen and a few things were not to his satisfaction. So suddenly my feet were raised by the stirrup, and between my legs I see three faces, lit from below -- blue like in a science fiction movie, looking at the area between my ass and my balls, poised and concentrated like they were expecting some great revelation any moment now. I understood how science can help us to love our not so attractive parts. It trumps revulsion!
A few Ct-scans later I was ready and Tom attached the tubes to the after-loader, the part of the construction that housed the radioactive pellets. Al had to double check, because mistakes are out of the question, regarding the damage that the high dose radiation could do, if the wrong tubes were connected. The room was well lit, not to fear, the heavy doors slid shut and Al chose “The Police” and more “Sting” to accompany me through the 45 minutes during which the radioactive pellets, mounted on elastic steel rods, would be guided into my bladder muscle with great speed to minimize the radiation of healthy tissue – you could see the tubes vibrating. Then the door on the opposing side opened and a little later I was back in the hospital in front of my breakfast, a plate of meanwhile cold scrambled eggs, that I wolfed down anyway, because I was starving after all these turbulent events.
I had another treatment late afternoon and felt pretty familiar with the procedure by now.
That night I had all my three sleeping aids lined up. A Lorazepam at nine, amitriptyline at ten, and between 11 and 12 an Ambien, By midnight I was out like a light, gurney or not, the little electric pumps that sounded like a defunct CD Rom drive, muffled laughter in the corridor, nothing came through – I was pleasantly gone.
I woke up early, ready to do my morning exercises – but only half of my body was under my jurisdiction. I started planning my escape...
This morning I had time to have breakfast before the radiation.
Then the usual procedure, double-check, all numbers matched – Al played the Rolling Stones for me. For my fourth and last treatment later in the day I suggested he should play “Last time” by the Stones.
...and so he did. It emphasized the emotion that everybody that said “Good bye” at a dentist office, or while being released from jail – carefully avoiding a “See you soon”, or “Later...” Because the extraordinary circumstances the hearts have opened up and you feel like your saying goodbye to friends.
Miss Lalaine, the physician's assistant, arrived to remove the tubes from my perineum and I have to admit that it was a strange situation to have a beautiful woman leaning on my thigh, bending over my abdomen, to pull 19 plastic tubes painlessly out of my ass.
She did great! – Now even the epidural was turned off, but my escape plans still had to wait 'til the next morning, when they would remove the epidural hardware from my spine.
Thursday morning “pain-management” sent somebody, who extracted the epidural in 20 seconds, and now my last attachment to the hospital was the bladder-catheter. – Which was permanently checked for it's blood content. They would only let me go, when there was very little, or no blood to be detected.
My urine – to my delight – was almost clear, the nurse called the doctor that I was ready to be released, when I made an unfortunate move, and a big red blob flooded the urine bag. The nurse was almost canceling my release, but the doctor calmed her down, it is expected to bleed for a while, as I also knew from other bladder surgeries.
Then the catheter was gone! I made my first steps, a little wobbly, a little weak, but I was moving all by myself, and all I needed now, was transport. Robin had problems picking me up – mind you – she had organized the whole move ( a couple of trucks) while I was in hospital, and was momentarily stuck in the new house with some plumbers and the cable company. Luckily my friend Matt was not busy, and jumped right away into his car to take me to Baldwin Hills.
Our new house – the power was on, there was my bed, close to the bathroom and the TV worked. I was in a elated manic state, could not find a robe and started running around naked – looking for light-switches – locating towels, etc...
I felt great – but after an hour the pain set in, and a night of torture started, oscillating between bath and bed – until I finally fell asleep around 3 or 4.
Since then I got better every day, with occasional slip ups.
The day after I came home I managed to attach my computer, but it took another week before I had the energy to read my email...
Now two weeks have passed and I finally wrote this chapter.

MUSCLE INVASIVE BLADDER CANCER

Alea jacta est, as my Latin teacher would say "The Die Is Cast", the Rubicon is crossed, rien ne va plus, nothing is more ...the decisions have been made:
The third of June, I will be taken to the UCLA Department of Radiation Oncology and begin a therapy that promises to kill the cancer and preserve the organs with a minimum of side effects.
HDR Brachytherapy, until now, is not widely practiced, and when it is, it usually is for prostate cancer. Very successful though!
HDR – Stands for “High Dose Radiation”, because it operates with high doses of radioactive iridium. The tumor is radiated only for minutes, but several times a day. After three or four days, I will be finished - and that's it!
These three, four days, however, are frightening. On the first day my legs and pelvis will be constrained, and small plastic tubes are passed through the scrotum into the invaded bladder muscle. These tubes are adjusted with a template and cannot move during therapy. For that purpose my lower body is anesthetized and immobile due to an epidural lasting three or four days.
The next day, after a computer has calculated the movement and retention of the radioactive pellets with the requirement to radiate the cancer and not the healthy tissue, I will be moved to another building, where the radiation takes place.
This goes on for a few days until the desired amount of radiation is reached, and after removal of the plastic tubes I may go home.
I have to admit that this seems to be a torture designed specifically for me.
I wish I could feel heroic, like for example, Tim Leary, who would turn it into a great spiritual adventure, and have everybody line up for a three day epidural in no time!
Despite my horror being tied down, the situation has the advantage that, because of the novelty of the procedure, the people conducting it seem way more enthusiastic than your average hospital personnel. I will try not to disappoint them and make it through and get better.
And what would be the alternative? Pout?
Because we also have to move (the house has been sold), we will be packing until Saturday, and Sunday I will have to start the preop rituals, and Monday Robin will deliver me to UCLA.
I will try and report from the place of chemistry and healing, of magic and mystery..?

CANCER AND MEDICAL MUSHROOMS

IF YOU HAVE CANCER, HAD CANCER, OR NOT –
THIS SHOULD INTEREST YOU!
Brummbaer 2008


Prologue

People, who are diagnosed with cancer, share two experiences.
In my case, the first experience manifested itself quite harmlessly, in the voice of the doctor, who said: “You might want to check this little bump on your neck.”
At this very moment time slowed down, the room became perfectly quiet, Robin and I looked into each others eyes, and we knew it was cancer; we just wouldn’t believe it until there was irrefutable proof.
The second experience is when they tell you what your survival chances are for the next five years. When I asked the surgeon – world renowned Dr. Castro, from the excellent UCLA – he inconspicuously closed his office door, and I had a feeling this wasn’t going to sound good.
“Had we found the primary tumor, I would say you’d have a 40% chance to survive the next five years, but since we didn’t find it, your statistical chances are about 20%”.
That didn’t sound promising, but consider: Twenty out of a hundred survive -- what you need to find out is how to become one of those twenty – because if you can understand your statistical chances, and are able to improve on those, the general statistics don’t count for you anymore – you will either be a 100% survivor, or a 100% dead! You need to become one of the twenty 100% survivors!
As Mark Twain said: "There are liars, damned liars and statisticians."

Then there is one more experience cancer patients share – except, not everybody will make it this far: One day your doctor will turn to you, look deep into your eyes, and say: “You know, it is almost five years without a recurrence… statistically it’s not very likely for the cancer to return…”
And he is happy -- he smiles, because my health gives his life meaning and purpose, and there is no question that without him I would not be here! And, as we playfully hifive each other, we both have a bit of a crazy glint in our eyes, like secret conspirators, who tricked cancer out of another victim.
At least for now!

No humor for the tumor!

Now, assuming you made up your mind how to deal with the cancer at hand. You have chosen a course of action, and from now on you will be subjected to good advice and a new guaranteed cancer-cure, each new day.
Some give good advice like: “Avoid stress!” – But nobody explains how to do that, when you live under the Damocles-sword of surgery: chemotherapy, radiation, and other painful and debilitating procedures, at times leading to amputation or death.
My method to deal with the unavoidable stress included a computer with internet access, and the effort to learn as much about my cancer as there was available – and there is a lot available on the internet – more than one can handle at times.

Many people try to deal with the stress by choosing the opposite, a dangerous solution: They try not to think of their cancer -- if possible, forget about it -- and leave the healing up to the doctors. It’s understandable why!

You’re also supposed to laugh a lot. It’s healthy!
So I looked for some cancer jokes. ”Anybody heard any good cancer jokes lately?” There are jokes about death and murder, cannibalism and necrophilia, there is gallows humor – I found nothing on cancer.
Cancer is a joke-free zone! No humor for the tumor!
A very unhealthy (excuse the pun) situation, I intend to change instantly!
Here is my cancer joke:
“The three good things about my cancer!
First: The cancer-therapies reduced me to my ideal weight!
Second: Washing and drying my hair took only two minutes!
Third: My cholesterol-level, mysteriously, was never lower than after chemo!
...if you can just ignore the rest…”

What really happened!

When January 2007, I detected a drop of blood in my urine, I did not know that I just had engaged in a lifelong contract with the medical industry, with the health insurance and several MDs. Painless blood in your urine usually means bladder cancer, and two weeks later the cystoscopy at my oncologist/urologist/surgeon left no doubt – I saw the little tumors with my own eyes. As long as the cancer doesn’t penetrate into the bladder-muscle it is called “superficial” and as such, is not going to kill you, at least, not right away. The modern miracle of the endoscopy allows for an early detection, unthinkable 100 years ago, which buys you time to fight back.
The doctor didn’t seem overtly alarmed and very matter of factly would say: “Now, this is the plan: In two weeks you have surgery – the tumors have to be removed and any other suspicious tissue, the surgery will be intravesical, which means, it all is done with a catheter inserted in your urethra and there will be no scars except the ones inside your bladder. Then, two weeks later, to prevent a recurrence, we will put you on a six week program of one weekly infusion with BCG – a tuberculosis vaccine – which will irritate your immune system to the point where it attacks any cancer that was either overlooked or grew recently.”
And so it was done!
This is the standard procedure in America for superficial bladder cancer and has the most promising statistics to prove it. (Mind you, they are doing this already for twenty years -- not much progress here!)
Patients who don’t respond to BCG are called BCG-refractory and will be treated with local chemo like Mitomycin C, or Gemcitabine, and other stuff with diminishing success.


Drilling for urine.

I had the bad luck to develop some complications like a urethral obstruction, which gave me the opportunity to learn how to catheterize myself. An interesting experience – per aspera ad astra – through pain to relief!!! It was like drilling for urine, but to get to it your body has to hurt itself – and I’m a wimp…
But the moment, just when it feels you have pushed the catheter as far up as your throat, the precious moment, when you strike urine, when you break through, when a happy sprinkle of yellow arches into the bathtub, as the pain and the pressure leave you – it was mind over matter, a victory of willpower and determination. A great empowering moment!!!
As I said at the time, “Something you don’t learn in art school”!
Still, the BCG-therapy had to be postponed for a week and we suspect that that was the reason why the first checkup, three months later, showed some improvement, but plenty of cancer left for a second resection. Two weeks after the surgery we started the BCG and a week later I was knocked out by the side-effects. My bladder shrunk to the size of a walnut, reckoning from the amounts of urine that I needed to evict every twenty minutes for the next four month. The next cystoscopy showed a scarred and inflamed bladder, but no cancer. The BCG had done the job. I was good, as far as the cancer was concerned, but, as my secondary opinion doctor phrased: “The biggest issue at present is that you are a bladder cripple. Hopefully things will improve.” Permanent painful urination and spontaneous stabbing pains in my urethra and prostate did not make me socially presentable. I was more or less immobile for those months.

Some facts:

Now, in the meantime, I had a lot of time to study bladder cancer and the various therapies!
The facts are: One third of bladder cancer patients have no recurrences after therapy.
The second third has multiple and aggressive recurrences, and after penetrating the bladder muscle, the metastases soon kill these patients.
The third group has also multiple recurrences, but repeated surgery, BCG maintenance-therapy to keep the cancer at bay – for a while. When it finally penetrates into the muscle the doctors suggest an artificial bladder, a neo-bladder, which they are very good at creating from one’s own intestines. They might even restore one’s lost sexual potency – nevertheless: it all too horrible to wallow.
But they keep fixing you, until you die from something else.
The reason for this predicament lies in the practically impenetrable walls of the bladder, which hide and protect cancer cells, even if your bladder is bursting with cancer-poisons.
That’s why bladder cancer almost always returns – therapies catch the cancer only after it surfaces from the inner layer of the bladder, the mucosa.
The bladder cancer patient is a catch for the medical industry! From now on to the end of your life you will be expensively checked every three month by cystoscopy and probably need (minor) surgery – the costs are staggering. Every year ca. 60 000 people are diagnosed with bladder cancer in the US alone. And most of them become lifelong clients/customers/subscribers to the current program, with no cure in sight!

“Everybody wants to go to heaven, but nobody wants to die.”(Peter Tosh)

A friend of mine, a Swiss MD, pointed me to a German urologist, Dr. Thiel, who claims to have a cure for bladder cancer. Now, I’m a great skeptic when it comes to cancer-cures. After fighting cancer for five years I’ve become an expert on the topic. In the field of cancer cures you find enough clowns to fill a three ring circus. Like Hulda Clark’s progressively promising book titles: "The Cure for All Diseases”, "The Cure for All Cancers", "The Cure and Prevention of All Cancers", "The Cure for All Advanced Cancers", and finally: "The Cure for HIV and AIDS". It is amazing! Or the Gershon-therapy with their raw potatoes and coffee-enemas – we were at the Gershon clinic in Tijuana – and it was a sad sight. As if Mexico’s poverty was crawling through the windows, they had only one payphone for the whole clinic and so on… (Mr. Gershon also died of cancer.)
If you are already annoyed by the countless flu-remedies one is permanently presented with, during a flu, you have no idea how tiring it is to hear about a new cancer cure every day -- usually combined with the threat of suffering and death, if you don’t submit yourself instantly -- garnished with the amateur-psychologists accusation that you probably don’t want to get better anyway. Talk about adding insult to injury! The automatic rejection one develops towards new treatments doesn’t make it easier to tell reasonable ideas from total nonsense.
The best would be if I could subscribe to one of the religious belief-systems and have Jesus save me, but then again -- the hospitals are full of dying people, who believe in Jesus! What are they doing wrong?
Cancer patients facing death or mutilation will understandably try anything to avoid pain and death, and are perfect targets for scams. They are also perfect targets for well intended, but useless cures. Cancer has so many unexplainable spontaneous remissions, that somebody, who ate a lot of oranges before his remission, might believe he found the “Orange-Cure” and will feed every cancer patient with oranges, having only the best of intentions. (BTW: Vitamin C did also not quite deliver what Linus Pauling wished for. He and his wife died of cancer.)

And then I found the cure!

A cure for bladder cancer? Well, I’m not an MD, nor a molecular biologist, but I’m very willing to learn, because my survival might depend on it. And as far as my understanding reaches: Dr. Thiel’s invention should work!
In summary: The “iontophoretic delivery” exposes the bladder to a weak electromagnetic field to allow an ionized substance to be pushed not only through the bladder-wall, but also into the cancer cells. “Iontophoretic delivery” is not Dr. Thiel’s invention, but a common and successfully used method to get medical substances to hard to reach places (Like with burn-victims). Dr. Thiel’s invention defines the substance that is iontophoretically delivered into the cancer cells. Once in there, the electric current allows Dr. Thiel’s substance to destroy the DNA of the cancer cell. It is important to mention that the substance selectively only kills cancer cells and has no noteworthy toxicity for normal cells. His substance is called “Iontoflavin®“and patented, but I think the patent runs out this year.
Now, why is this therapy not available? You can read up on it at Dr. Thiel’s own website:
http://www.iontophorese-tumortherapie.de/iontophorese.htm
It’s in German and English and the FAQs explain his legal hassle.
What is needed are clinical studies, Dr. Thiel has done what a single person can do. One would think that the generally poor prognosis for bladder-cancer would create a rush of studies, because, if it works – one or two treatments will delete all optional cancer cells from your bladder for good.

And then the cure was gone!

A cure!
Of course, it would also be really bad business for the current bladder-cancer-industry! Most urologists I bugged with Dr. Thiel’s cure, only acted dismissive: “If there was something to it, why aren’t we practicing it?” -- Which makes only sense, if you’re not practicing it, because you’re not practicing it!
I have not heard one single argument why it wouldn’t work or why it is not studied at all! The most optimistic was a doctor, who suggested I try India, “they are pretty open over there…” (Or maybe Tijuana…?)
I’m still optimistic, because Dr.Thiel’s method is also fairly cheap – the equipment costs nothing compared to what hospitals are used to spend on gadgets -- and somebody, sometime will realize that it may not be much of a business, compared to the big medical and pharma-companies, but a business it will be!

How to survive cancer without a cure.

I can’t afford access to every medical site, but PubMed alone, is already a lot of ground to cover. Google, of course, has everything, including every crackpot, who learned how to spell cancer.
I found three different approaches to decrease my chances for a bladder-cancer recurrence. All are based on double blind, placebo-controlled, randomized studies with control groups.

The first method doesn’t need much effort: The study says that the habitual intake of Lactobacillus casei reduces the risk of bladder cancer significantly. Lactobacillus casei is, just like lactobacillus acidophilus, a bacillus, which regulates your intestinal flora. The caveat: It seems to work for primary multiple tumors, and recurrent single tumors, but not for recurrent multiple tumors. Available in good health-stores or the internet.
http://www.ncbi.nlm.nih.gov/sites/entrez
PubMed: PMID: 12053032 / PMID: 7744150 / PMID: 1466089

The second way to keep bladder-cancer away is claimed by a study using relatively high doses of vitamins. It says: “Megadose vitamins A, B6, C and E plus zinc decrease bladder tumor recurrence in patients receiving BCG immunotherapy.” Then a bit of a downer: “Further research will be required to identify which ingredient(s) provide this protection.”
With a reduction of recurrences of ca. 50% you would think, they would know by now, which of the vitamins is actually doing the trick… Am I just incredibly naïve, because when I see an opportunity to improve the chances of cancer-patients, I expect the medical- or pharma-industry to jump to the occasion to help millions of people, who are dying under horrible circumstances. Even in war – the ambulances are not shot at!
http://www.ncbi.nlm.nih.gov/sites/entrez
PubMed: PMID: 8254816

Finally: the medical mushrooms!

The third method creates an even sadder picture of the current situation regarding bladder-cancer, and actually most other cancers, but it also gives a great incentive to investigate for the inflicted.
Several people, amongst them my Swiss MD, pointed my attention to medical mushrooms and I expected the usual helpful effects – antioxidant, immune-stimulating, cancer-killing, quality of life improving reports like the one’s you hear about grapefruit seeds, or liquid zeolites, or green tea… And indeed, there is more anecdotal evidence for the healing power of medical mushrooms than you will ever be able to read -- but there were also some real studies! Studies with control-groups and several other substances in comparison!
I found three studies 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.

http://www.ncbi.nlm.nih.gov/sites/entrez
PubMed: PMID: 1935440 / PMID: 7842985 / PMID: 11829890

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!!!
When I passed these studies to my second opinion MD, Dr. Quinn (USC/Norris Cancer Hospital) I got the following email:
“Mushrooms are also very interesting but the results you draw from on Pubmed have really only been examined in China, where patients with all forms of bladder cancer get a variety of mushrooms in addition to their usual therapy. In the West we like to understand why the mushroom might help to then design a trial to test. Generally if the data are compelling then we design trials independent of the pharma companies.”
This was of course not an answer to my question, but an arrogant poopooing of other scientists than westerners. Do I understand it correctly, that “In the West we like to understand why…” and then, why do I find in all the “Western” studies I read, one sentence over and over again: “However, its exact function remains unknown.” In Western medicine???
I don’t think we would have Aspirin, if “Western” medicine worked like Dr. Quinn postulates.
Besides, Dr. Quinn’s defense, about the independence from pharma companies, doesn’t even pass the giggle test!
The sad fact: There are no further studies – East or West – regarding the Zhuling mushroom, nor are there any randomized controlled trials, with placebos, control-groups, etc. The few Japanese studies on other cancer-fighting mushrooms (probably equally powerful) with control-groups were mostly done on mice or in vitro, and most studies seem not to be all that interested in helping the patient, but generally working towards the goal to find the one substance, within the many contained in a mushroom, that could be made into a pill and sold. One patent exists already for the Maitake D-Fraction®, which contains mainly beta-glucans and can be bought in health food-stores. In Japan, supposedly, this is the first medicine prescribed, when diagnosed with cancer.
In case I sound bitter with all these lost opportunities, and the perfect cruelty of the corporations, which are constructed, so nobody ever, has to be responsible for all the pain and suffering they cause, -- I myself prefer to be pissed off!
I want my cure!!!

And now for the good news!

When I went for my last cystoscopy, I expected, as a regular side-effect, to have a sore urethra and prostate for a couple of days. A pencil-thick tube, all the way up into your bladder, can irritate some very sensitive tissue, but it’s the un-bloodiest and shortest way to give you what you need -- a glimpse into your bladder.
As coincidence would have it – I started to drink Reishi tea for the first time that day.
The mushroom seemed to have an energizing effect, besides tasting pretty bitter. The effect was almost like a low grumble-coffee-high, but deep and solid under the surface, without the coffee-jitters – a completely different energy. Nevertheless, somehow related!
At the time I still had a scarred and inflamed bladder, with an urination-frequency of about 30 minutes, and frequent spontaneous stabbing pains in prostate and urethra.
As coincidences go: The same time I started the mushrooms, not only did I not have any unpleasant after-effects from the cystoscopy, but instead I started to feel better… every day…in every way... The stabbing pains never returned, my urination-frequency (great word!) started to normalize, and unexpectedly a layer of fatigue that, unknown to me, had bothered me since my head and neck cancer, suddenly disappeared too.
So naturally, I will try to keep the coincidences going, until we find irrefutable proof for one or the other outcome. Up to now, the mushrooms have worked – I cook a pot of Zhuling tea every three days and learned from the Chinese that you don’t measure edible mushrooms by milligrams, but with a spoon and an educated guess. You can also add a little miso and you have a tasty, nourishing soup.
And remember, just like other good medications – no known overdose, no side-effects!
My urologist/oncologist/surgeon was well aware of my sensitivity to BCG, and had reasonable doubts about a prophylactic BCG maintenance-therapy himself. After he saw the three studies demonstrating the Zhuling mushrooms’ effectiveness, he wholeheartedly supported my decision to try the mushrooms, rather than destroying my bladder further with BCG. I will not go into details how the medical mushrooms do their fabulous work, partially, because I don’t understand it, and also, because as mentioned before: “However, its exact function remains unknown.”
Now my wonderful doctors and I are waiting for the next cystoscopy and we all hope this works!

What does all this mean if you don’t have cancer?

Nothing! You can smoke your cigarettes and suck on your exhaust-pipe as much as you want – you know, some people are just lucky – for the rest of us mortals I suggest prophylactic mushrooms.
Medical mushrooms are usually sold either as fresh, edible mushrooms in better food-stores, by the pound – Shiitake, Maitake, etc., or dried, or powdered, through the internet and health food-stores. They appear to be very helpful for all kind of ailments – you might have to check the internet (Info below) to find out what type might benefit you.
If you have cancer, it is suggested to use the “hot-water-extracted” capsules, because the mushroom-extracts contain large amounts of the polysaccharides, which are the main suspects as cancer-killers and immune-boosters.
Or you might do what I did – I ordered a kilo of Zhuling and make the tea myself. (Making tea, simmering it for some hours, is the vulgar expression for the more elegant “water-extraction”)

In summary: Medical mushrooms are great to maintain one’s health.
Mushroom-extracts are very effective in preventing or fighting current cancers. Often enough mushroom-extracts are used as an adjunct to the regular cancer-therapies and obviously ameliorate the side-effects from radiation and chemo.
Even Western medicine acknowledges that!

Four companies, who sell mushrooms and seem trustworthy (You can only afford the best: Mushrooms grown under dubious conditions might be harmful!)

Fungi Perfecti http://www.fungi.com/index.html

Mushroom Science http://www.mushroomscience.com/

Alohamedicinals http://www.alohamedicinals.ca/index.html

Vitalpilze http://www.vitalpilze.de/gfh_de_1_53.html

And the above in English:

http://www.vitalpilze.de/Community+for+Medicinal+Mushrooms+Science_53.html

Additional info if you need to know:

http://www.vitalpilze.de/Diseases_5.html or: http://www.fungi.com/mycomeds/info.html

And from the Government Published Cancer Reference Book:
"Medicinal Mushrooms: Their Therapeutic Properties and Current Medical Usage with Special Emphasis on Cancer Treatments"
A free download at:
http://www.alohamedicinals.ca/research.htm