On 7-7-2010, I had my second MRI (and my 18th overall since August 24, 2009, if I am counting right – plus something like 14 CT scans -- it is getting routine) and my fifth vaccine shot on the same day. The results were as good as it gets, no evidence for any tumor growth, and the best MRI since right after my first operation at Columbia Univ Medical Center.

In May, I had my first such vaccine shot from the experimental vaccine trial at UCSF under Dr. Andy Parsa in cooperation with Antigenics Incorporated, which produces the vaccine. (For more information if you are interested please see http://neurosurgery.ucsf.edu/index.php/research_BTRC_parsa.html, and http://clinicaltrials.gov/ct2/show/NCT00905060 for a more in-depth description). And this was followed up with 3 additional booster shots on a weekly basis. UCSF has enough vaccine to keep me in this trial for over two years.

After these shots, I went through an eating phase, where my base metabolic rate went to something in excess of 10000 kcal/day – think of nine sandwiches for breakfast, followed by two 16” pizzas for lunch. Kind of like U was back in 20’s again. (Wonderful memories of eating a pound of Lindt chocolate every day, except sweets are out for me now, as cancers thrive on glucose).

Then on 6-16-2010, I had my first 5-day round of monthly temador, but at a rate three times higher than before and nothing prepared me for how my body reacted to this dose of temador, especially the last few days, with effects lingering for a whole week afterwards. The nausea was palatable, and keeping food down was impossible. I went through a phase of excessive sleeping - up to 22 hours a day for 10 days in a row.

So last night I started my second monthly 5-day round of temodar, and this time I am getting both anti-nausea meds and stimulants to manage the effects of the temodar.

Not being able to drive a car I had to hire a driver named Dave, of Tongan origin and size, big enough to carry me if necessary. At least that was the original idea. Well, actually my parents hired Dave, and they are paying for him... So moving right along...

Dave is an aspiring artist and musician dreaming of, and working towards a music career (he has a cool rock band, which has various gigs). He has a beat-down Mercedes with a perpetual smelly oil leak, which got better as the California sun backed out whatever there was. However, he is an exceptionally safe driver, and he is a talented intelligent sunny guy with bright smiling eyes, always smelling as if he just finished a shower after a jamming session (he is on youtube) or after a workout at the gym (he loves being in shape and having a fun life). He always compliments the ladies – I think he is in a perpetual search for a girlfriend – but his compliments are most sincere and authentic. Actually, if you read all this, you may get the wrong impression. When he has an hour off, one would think he would head over to Starbucks for a Frapuchino, but instead he goes to visit the grave of his grandparents, and he came back with tears in his eyes. That is MY kind of guy, with a very sensitive soul.

Of course, chemo or radiation treatment is very hard on most people, physically, physiologically, and mentally.

The welcoming entrance and corridors of Stanford Cancer Center feel like a light airy art museum, with modern art everywhere including the radiation treatment area, and live piano music. Similarly, once you make it past UCSF hospital’s perpetual dour-looking security personnel, the UCSF’s Neurosurgery office reception on the eighth-floor has one the most spectacular views anywhere in the world, with a view stretching from the Pacific, to the Transamerica building (or whatever it is called these days), with a majestic overview of the Golden Gate Park and everything in between. In Columbia Univ. Medical Center’s you have to get a pass to get into the building, but once you get to the brain tumor center, there is again a similar feeling of airiness and optimism and complimentary drinks. In contrast the radiation therapy area at Columbia feels more like a prison with its confined old spaces. There is of course a reason for the airy feelings… and that is to sooth the weary, and I’ll talk more about “weary patients” in a moment.

Stanford is one of the undisputed places to go for radiation treatment, because of the expertise of the doctors like there, and the excellent nursing and technical staff. They are doing a terrific job.

The 3-6MeV radiation treatment is very powerful. In my case, the radiation had to penetrate skin, skull, blood vessels, and healthy brain tissue to get to the cancer, and it does significant damage to all these structures and the healthy cells and to the immune system.
Some of the cancer patients that I encountered had skin cancer, which means radiation over your whole body, incl. the eyelids, in which case the patient has to wear lead contact lenses for the duration of the treatment. Ouch...
Many were residents from the farming communities in Central Valley, or even from out of state, staying in low-cost motels or low-cost apartments along the 101 freeway.

What was interesting that over the 6 weeks I was being treated at Stanford I saw many patients also on the same 6-week schedule as me. And some did really well, and some did not.
So what makes the difference between those two groups? It is after all a fight for life and death... According to the very friendly and helpful guest customer service ladies and volunteers in red and black at Stanford (as I said Stanford Medical Center feels more like a museum) they could in fact tell not only the difference between the two groups – those that would make it and those that would not, and the answer was always the same: “yes, there is a clear difference, just look at their eyes.”

Many of these patients were “distracted”, much concerned about their family finances, or a dog left at home. One patient had his daughter drive him every day from Stockton to Stanford, a 6 hour roundtrip, just because he had 2 dogs he was soo attached to. Those were the “weary” patients. I wonder how many will make it…

I understand the financial burdens, I understand the love for your dogs. But they become a deadly distraction. As a cancer patient you only have an obligation to yourself.

Furthermore, Western drugs, like the chemotherapeutic drug temador, and the steroid decadron, which I have been taking for almost nine months, etc. are extremely powerful, and they all have significant side effects, which when not properly controlled need other drugs to manage (just like I have to take anti-nausea drugs and stimulants to be able to function, which need other drugs, often in a vicious cycle. These drugs are toxic to the liver, spleen, and the kidney (remembering that all medications are eventually metabolized).

Unfortunately, most patients never counteract the effect of these drugs. So over the course of my disease, I have met many, who are unwilling to make the necessary lifestyle changes, which include diet, smoking, drinking, stress management (relaxation, meditation, etc), and sleeping habits.  Lifestyle changes are difficult, since we are creatures of habit, but changing your lifestyle and looking at the fight with my cancer as a total war is the right mindset. As a cancer patient, do not kid yourself. You will never win your fight against your cancer, if you compromise either in your mindset or some issues besides your mindset, and those issues very easily can and will kill you if you are not careful.
The most important one is to get enough rest, and the second is getting enough nutritious food . A great appetite is wonderful if you have cancer. Note that I emphasize nutrition, including supplements.

But, all three hospitals that I have been in for any amount of time, serve junk food with little nutritional value, full of sugar and fats. Cancers LOVE sugars, a fact known since at least Otto Warburg got a Nobel prize for finding out that cancers in general are anerobic, fermenting glucose, and that they have a very low pH value (and therefore are acidic in nature). Reversing the acidity and the low oxygen environment forces cancer cells to either convert back to healthy cells or to die off. The junk food puts extra pressure on your digest system.

This begins a viscous cycle: because the patient has bad lifestyle habits that do not counteract the strong pharmaceutical drugs and the byproducts of the chemo & radiation treatment, continue their bad lifestyles, they deteriorate (I have seen it happen a couple of times), taking more allopathic drugs, gets more chemo-radiation treatment, etc. To break this cycle requires changes in lifestyle.

Thus the weary patients...

As I noted the hospital feels like an art museum. It may sound most strange to confuse the importance of atmosphere over medical expertise, but the clinical environment and the atmosphere are very important, and it greatly affects attitude, outlook, and survival. It is as simple as this.

So what are in my opinion at least the predictors of survival, besides great treatment and attitude?

Significant lifestyle changes – most important ones changing diet, getting rid of that glass of wine in the evening, stop smoking, or getting more sleep, something I was sorely missing in Hawaii.

And laughing a lot.

One of my colleagues’ father had been diagnosed a long time ago when he was in his late fifties with inoperable pancreatic cancer (the cancer had grown around the aorta). He was given two choices by the doctors: either we give you treatment (whatever it was in those days), or you will die within a few weeks. His response was something like this: “Sew me up & send me home”. There he made a 180° turn in his lifestyle, incl. changing diet, got rid of all negative people in his life, bought every “Three Stooges” movie available, and spent 12-16 hours a day to laugh himself to perfect health.

Not that you can laugh every cancer away, but most people are unwilling to even attempt to make any changes. In some cases, it may be impossible (a good appetite with stomach cancer is almost a miracle), but for many people it is a combination of education by doctors, culture, family influences, outlook, religion, community support, and determination.  Thus, I want spend time and space to discuss some of these aspects in detail.

The medical community in general does little about changing simple things like diet. In my experience most hospitals do not even mention – much less have specialists in diet and lifestyle– about diet as a MUST change. Some have a smokescreen “dietitian” to advice people, if that.

The exceptions are rare. Fortunately most of my doctors are very inquisitive in the details of my diet. Most places let patients eat whatever they want. At Columbia, I shared a room with a Parkinson patient, who lived off cheeseburgers and French fries twice a day, (OK that is NOT cancer, but still…). Moreover, he had not had a bowel movement for ~28 days (no wonder with that diet), rotting out his colon, the most important organ in the body.

Hospital food (from the cafeteria) is principally DEADLY junk food, from breakfast to dinner, and if you don’t believe me, just look up hospital food ingredients. And often patients, especially the elderly suffer.

Typical breakfast consists of bagels or toast w. eggs or jam, and lots of fat and sweets, the preferred pro-cancer diet. Now there are tentative efforts to change that (http://news.bbc.co.uk/2/hi/health/8654929.stm)

But, one needs to remember that a hospital typically charges $5000/day for room & board. Oh yes, the hospitals are of course non-profit, which means that the extra expenditures which should go into a few $$/meal go into some board member’s pocket. Just check the salaries of CEOs & other officials of so-called “non-profits”. And insurance companies don’t pay for good food either. Sad & reprehensible, and in my opinion bordering on the criminal. But then again, most doctors and nurses eat that junk every day in haste over lunch. No wonder many end up with cancers (like GBMs) and heart attacks themselves (the statistics are quite revealing).


MOST of us are creatures of habit. Others are at the edge of their own resolve, and often they worry more about their houses, dogs, finances, family, travel, etc. These issues are terribly distracting to the patient. Of course, to make a choice between potential financial ruin and life is difficult, so I will NOT prejudge anyone. But, most don’t really face financial ruin, they express more often an unwillingness to even really discuss the subject be it for shame, or other reasons (in most cases there seems little real honest communication between the patients and other family members – resignation and desperation reflected in their posture & eyes, as noted before. It is extremely sad.
Surprisingly, when spoken to, most feel relieved to be able to open up about their life and to share their very real worries and concerns.

The problem with your personal war with cancer is simple: It works slowly. It is not like a gunfight, where everything is over in a few seconds. It takes years or decades to get rid of a cancer. So if I ask other patients:” Well if I held a loaded gun to your head, and told you to change your lifestyle right now, would you?” All said: “of course”. So much for psychology.

Others says: “I am going to win no matter what!!!”, and those invariably seem to return home in great shape. They are optimistic, defiant even, just like me. Of course, this is hard on family members. This ordeal has been very hard physically and psychologically on my parents, and I try to help them to ease the burden. I am fighting, I am suffering, I will endure. I was often at the edge fighting extreme pain, but this is all just temporary. Death is forever...

I am seeing my TCM doctor Fred Dong in Los Gatos three times a week. He uses both acupuncture and Chinese herbs, and while the former is essential to treat my physical shortcomings (which I also treat using OT & PT), especially to restore the sense in my left hand & leg, and maintain my “chi” (life force). The herbal tea is what supports my health, and my appetite, and as noted before a great appetite is essential for survival. The herbal tea counteracts the toxic side effects of the Western drugs, but Chinese herbs are much to weak to compete directly with any Western drugs. However, the supplemental TCM herbs have kept me from physical collapse especially during the rounds of chemo-treatment, as most doctors tell their patients happens in the case of chemoradiation or radiation treatment.

OK tonight is my next dose of temodar, and a good time to hibernate over the weekend, or maybe not :-)