And another brain tumor...

To recap: On 7/6/2011, we found some contrast enhancement in the bi-monthly MRI images where GBM number 1 and GBM number2 had been located on my right parietal lobe, which the tumor board at UCSF concluded was most likely a treatment effect (see http://www.minofreund.org/2011/07/sitting-on-pins-and-needles.html). Treatment effect includes immune response to the HSPP96-vaccine and delayed effects to chemotherapy (temodar) as well as the high-energy radiation at Stanford, which I received in March to April of 2010, not to mention the 16 or so CT scans. So we waited for another MRI scan on 8/4/2011to learn more about my status. “Tumor or no tumor?” was the question. To answer that question there seems to be only a very limited set of non-invasive tools considered at UCSF:

1. Contrast enhancement in MRI images.

2. Perfusion studies, which measure blood flow.

3. MRI spectroscopy,

4. No PET scans.

The results on 8/4 were not clear again, but we all observed two issues: First, some behavioral changes in me, including my tendency to collapse my left ankle regularly. i.e. neurological symptoms. I switched to an air cast ankle brace, to prevent falling. Second: we saw an increase in size of whatever was showing up as a contrast enhancement on the MRI, and more edema. 

To be safe, we decided if the next MRI scheduled then for Friday 8/19/11 should not show any reduction in the mass-effect, Andy Parsa from UCSF would open my skull again, to clean out whatever was in there.

On the afternoon of 8/19, we all learned from my neuro-oncologist Jenny Clarke at UCSF the hard truth: The mass effect had grown from 2.5 cm on 7/6 to 3.5 cm on 8/4 to 4.2cm on 8/19 in the largest dimension. I was quite reassured and at total peace with myself – whatever it was it had to come out, and I quickly agreed on surgery the next Monday (8/22).

Thus, on Monday 8/22 I was scheduled for my third brain tumor operation to begin at ~10am, my second resection under Andy Parsa’s skilled hands at UCSF.

Even before the operation, I was starting to have massive headaches that no reasonable dose of Tylenol could solve. But not to worry, we planned for that possibility. I checked myself into the ER at UCSF on Sunday evening, and a large dose of decadron and some morphine gave me instantaneous  relief . During the night, I transferred to the neuro acute care on the eighth floor of Long hospital at UCSF. On Monday morning, I awoke early, assuming the surgery would start at 9-10am. I do not remember anything about the operation, except for Andy’s face and the presence of Dr.James Caldwell, a Scottish gentleman and the anesthesiologist who attended my second surgery in 2010.

The operation took from ~ 1pm until 6pm, after which I was transferred to the Neuro-ICU. I only remember that I felt extremely well cared for by the attending doctors. On Tuesday morning 8/23, I transferred back to the neuro acute care, ironically in the same room I had after my surgery in February 2010. The post-op MRI seems to be extremely clean, just showing a clean cavity, no edema, and no evidence for residual tumor. It was the best operation I ever had. I continued to have some mild headaches until Thursday early am. During that time, my parents stayed at a hotel near UCSF.

The sad news about brain tumors like GBM is that they are extremely resilient, and hard to detect if they are small enough. In addition, there is no simple accepted blood test to check for brain tumors. Companies are pouring billions of dollars into methods to predict failure of a cancer treatment, but the gold standard remains the pathologist report from the actual tissue, which in this my case turned out to be a combination of treatment effect and seemingly one of the most aggressive and difficult to treat forms of GBM.

UCSF does not offer in-patient rehabilitation, so we had to find another facility. The social worker at UCSF had changed. The old one (Jennifer) had been disastrous, while the new one was excellent, and she gave us a broad choice of facilities. We ended up choosing the new El Camino in-patient rehabilitation facility in Los Gatos, where I checked in on Friday evening (8/26/2011). Great place, infinitely better than the Bad-Samaritan Hospital also in Los Gatos, where I ended up last year.

I will dedicate the next few weeks of my time foremost to regain the full function of my body. We also have to quickly consider future treatment modalities, before another potentially deadly GBM creeps up…


    

Sitting on pins and needles

The time between June 30 and July 7 over the endlessly long Fourth of July weekend was living hell for my parents and me.
On 6/30/11, I had a MRI scan at the 3Tesla MRI at the El Camino hospital in Mountain View. The next day (7/01/11) my parents and I drove up to UCSF at Parnassus to meet with one of the neuro-oncologists (Dr. Nicholas Butowski, who is standing in for my usual doctor, who is on vacation). This had been my ninth MRI since the end of chemo-radiation. None of those had showed any tumor recurrence, and so we were prepared for a routine discussion of the latest MRI. The good doctor then stunned us, saying that the MRI showed a recurrence of my cancer at a size of about 2.2 x 2.1 x 1.3 cm^3 in the exactly same location where the first and second tumors (glioblastoma multiforme) had been. We were devastated, and our family had a very miserable Fourth of July weekend. Dr. Sarah Nelson, a world-renowned expert in radiology and biological imaging at UCSF managed to get for me a "research-grade" MRI scheduled for 7/6/11 -this time at UCSF Mission Bay. Their research grade MRI has many more capabilities, including perfusion and diffusion studies and spectroscopy of metabolites, with the ultimate goal to distinguish between tumor tissue, scar tissue, or a treatment effect.
On 7/7/11, my parents and I met with my neurosurgeon, Dr Andy Parsa at 9am at UCSF, to discuss the latest MRI from 7/6/11. Andy immediately started to talk about wanting to do another surgery.  “It would be really easy”, he said - "just to see what it is that is showing up in the MRI." My parents and I felt very uneasy and helpless.
Fortunately, the UCSF team had its weekly tumor board meeting on that afternoon of 7/7, where they discussed my situation. Besides the neurosurgeons, and neuro-oncologists, Dr. Sarah Nelson was present as well. In the end, all members of the tumor board agreed that I don't have a cancer recurrence – rather what is seen in the MRI is a treatment effect  (i.e. immune response from my body).

It is hard to describe what a relief that news was to us.

So my parents and I have been decompressing slowly, and I for one had the first good nights sleep on 7/7 since 6/30/11!
But it was a wakeup call, to be prepared for the worst and to proactively consider the whole arsenal of treatment options, well before I am forced to undergo a third emergency tumor resection.

All the pain I can bear

On the morning of October 27, 2010, I awoke in my bed, screaming on the top of my lungs, waking my mother, who rushed to my bedside.
It is the worst pain of my life on the left side of my body, a pain I never had felt before. The pain feels like someone took a rusty razor blade and shredded my muscles on the left arm, abdomen, and left leg. The pain in my joints feels like someone took a nail gun to my joints (shoulder, elbow, hip, knee, etc.).
I could hardly move. The touch of the bed cover on my left side felt like fire. Why do I have this burning pain? I could barely breath. What happened to my body? It is not that I had never experienced any pain in my life. I had been through a lot as a child and an adolescent:

• Second and third degree burns over 100 % of my face that I sustained during a fire explosion when I was a 13 year old. 
• A bicycling accident, resulting in about 350 stones imbedded in my face. It took my mother, who was acting as a nurse on that Sunday and the surgeon several hours to remove all they could. I still have a few left and every few years one works its way out). My father was no use once he had carried me to the hospital, because he fainted at the sight of the blood dripping from all over my face.
• And a dislocated shoulder, ripped tendons and broken ribs in a skiing accident in college all pale in comparison to this pain on the left side.

After the seizure on October 5, 2010, I had a subsequent series of MRI sessions that showed a gapping hole in my back, 1cm high and almost 3cm across one of the major bones (L4) in my spine, as well as a compression and deformation of the disks by over 1 cm both above and below L4. However, nothing else: apparently no new lesions or any cancer activity in the brain, fortunately no apparent damage anywhere else.
For two weeks, I lie in bed:
Too weak to get up, sleeping 22-23 hours/day - just getting to the toilet is a painful undertaking.
My mother feeds me 1-2 spoonful at bedside every day – if I eat a bit more, I throw up. The pain in the back is palatable.
My weight drops from 178lbs in late August to ~140 lbs by ~ Oct 20th (79.5 kg and 63.5 kg respectively). Any chemotherapy as well as physical and occupational therapy is on hold.
Then an urgent message from my neuro-oncologist at UCSF: ordering me to start taking chemotherapy for 5 days at a high dose from 10/21 to 10/25, and to come to UCSF for another round of vaccine on 10/26.
I dutifully take the temodar. My father sent an email to my neuro oncologists, and Andy Parsa - my neurosurgeon at UCSF, pleading to reconsider the timing of the vaccine, because of a strong potential collision between temodar (an immunosuppressant, as it inhibits the division of not only cancer cells, but also other cells like those of the immune system), and the vaccine, which is an immune booster. Nobody from UCSF replied. My UCSF neuro-oncologist goes on a vacation in Italy to Florence and Rome, which she later describes as splendid.



As a result, I receive the vaccine on the day after the last dose of temodar for this cycle (October 26 2010). Then on October 27 – barely 12hours after the vaccine injection – the onset of my severe pain.
Now the thing with temodar is that its metabolites accumulate in the body, so that the side effects are strongest in days 4-8 after starting the temodar, just when I got the vaccine.

The trigger was the collision of the temodar and the vaccine.

Dr. Rose Lai from Columbia Univ. finally diagnosed my pain as Reflex Sympathetic Dystrophy (RSD), also called Complex Regional Pain Syndrome (CRPS), a disease that affects the sympathetic peripheral nervous system. It is a disease, which is both unpredictable and difficult to treat.
The problem is that the pain itself is only the symptom of the underlying cause, which in itself is a viscous feedback of phantom nerve sympathetic nerve pain, because of course nobody cut me up. The pain jumps from the major muscles to major joints and back. In the first few weeks, this pain persists for 24 hours a day.
The trigger was the collision of the temodar and the vaccine.
For weeks, we try to get the help of UCSF’s neuro-oncology department for my excruciating pain.
In late November, we finally meet my UCSF neuro-oncologists. Their only solution is to prescribe a series of really ugly opiate painkillers like hydrocodone and tramadrol with terrible side effects, like vomiting, severe constipation, nausea, unbearable tiredness and weakness, just to name a few. However, there is no effort to help me with expert guidance (i.e. pain specialists). As we find out later, UCSF has a pain clinic, which has world experts in the treatment of RSD. It is typical of some institutions like UCSF to neglect patient care, and when problems arise not to search for experts in their own institutions. So much for our expectation of team UCSF – very disappointing.
The UCSF neuro-oncologists defended themselves claiming that they had never heard of RSD, but in an unguarded moment, one of them let it slip that my symptoms did not match those of RSD.  Well if you do not know RSD, then how can you know the symptoms? Furthermore, it is completely immaterial what they know about RSD. The fact is that they do not offer any solutions or refer me to pain specialists. Thus, I suffered for almost two months without effective pain treatment.

It was again my dear Rose Lai from Colombia, who referred me to the Stanford Pain clinic (under the direction of Dr. Sean Mackey, where I have received a series of treatments since December. These professionals at Stanford got their act together and were treating both the symptoms (the unbearable pain) and the underlying disease quite holistically, through a combination of ganglion blocks – for both stellate and lumbar ganglions, located in the neck and the lumbar regions, respectively – and excellent physical and occupational therapy, among others. Ganglions are nerve cell masses and essentially the junction between the autonomic nerves of the central nervous system, and the autonomic peripheral nerves.
A ganglion block is a surgical procedure, where the physicians inject about 10or 20ml of a pharmaceutical concoction, consisting of a ganglion blocker, an anesthetic (lidocaine), and a steroid directly into the vicinity of the targeted ganglions. The good doctors are using thick needles of various lengths, and various guidance mechanisms (ultrasound, x-rays, or old-fashioned deep knowledge of the human spine) to guide these needles (they are up to 20cm in length). After the first procedure, I insisted that they do not use an optional sedative, so I was watching them with detached interest poke me in the neck and into the back. The effect in each of the six or so ganglion blocks was instantaneous relief, as if someone turned off a switch. The pain relief tends to wear off in increasing intervals, at first one and later on for three weeks. Through a still continuing exercise regime the pain has become manageable with occasional unbearable flare-ups that I treat with non-opiate painkillers with no notable side effects, as well as acupuncture and meditation.
I really want to praise the Stanford doctors, nurses and especially the therapists, and getting cross referrals within Stanford and associated programs is the best and least painful my parents and I have experienced.

Now, in the middle of July 2011, almost nine months after the onset of the RSD, I still get the occasional flare-up, but mostly I can manage. However, there are always small setbacks with twisted ankles, and twisted knees (falling out of bed in the middle of the night no less).

The worst part is that my physical rehabilitation has been set back by about a year: Before the seizure, which was caused by my UCSF oncologist, as I like to remind everyone, I had hiked for 8 + hours without pain and without the help of a cane. Now I have to rely on my cane.

I was lying on a hard bed of some sort, a moving bed that is…I saw houses and trees fly by through a window, which is never a good thing and a siren going off. Why a siren? Then a young male face came into my view. Pleasant enough, the man was in an EMT uniform. Now, that was serious. I just had dinner at a Chinese restaurant called “Cooking Papa”. Great food: beef stew and drunken chicken, and a fruity desert with my colleague and close friend Jacob Cohen.
Another EMT was driving up front.
So I asked the first EMT, who was seated next to me: “What is going on?”
His calm reply was completely irrational: ”You just had a seizure“.
?Me and a seizure? Impossible” I said... “What is that nonsense? You are totally mistaken. “I never have seizures.” “No you had a seizure,” he said calmly.
”What kind of lie is that?” I demanded. He replied: “no, you had a Grand Mal seizure”. “Stop lying to me”, I thundered, and hit his arm twice or thrice for emphasis. He stayed cool, and asked me the usual questions, like my name – Minoru Freund -, what day of the week it was  - Tuesday -, what date it was – October 5th, 2010 -,
“Where had you been right before?”  came the question.
“At the Cooking Papa restaurant of course”, I replied, while he was checking my vitals…
“What were you doing there?” he asked. “Eating with my friend Jacob” I replied.
Jacob and I had one of those occasional dinners that were keeping me sane grounded, and energized.
My mother was home by herself, and my father was in Los Angeles for some meeting.
“What are the last things you remembered?” He asked.
“A fruity desert. Did you have some? If not you should – it is really good.” I replied.
Then I remembered that my left hand - my weak hand - had suddenly cramped into a tight fist, and I had tried with my right hand to loosen the fingers of my weak hand and to pry open the fist.
Those memories and the sounds of the dinning room came flooding back and mixed with the noise from the ambulance I was in.
“Where are we going?” I demanded. “El Camino hospital” was the reply.
That was good: “My primary care physician Dr.  Shane Dormandy, is at El Camino. He would sort things out for me” I thought.
At that moment, as the ambulance slowed at the emergency entrance of the El Camino hospital, the following memory hit me: “I was seeing both my arms reach up and then I was bending backwards in my dining chair touching the floor with my hands and almost with my head.” Then utter darkness…
“OK I guess you are right”, I admitted, “I did have a seizure.” “I am sincerely and terribly sorry for hitting you earlier”, I offered.
“It’s OK.” He said. “No really, I apologize wholeheartedly”.
“It’s OK.” He repeated.
The ambulance door opened in the back, I was moved out of the ambulance and my moving bed, became a rolling one. This was cool.

Then the usual paperwork, so out from my pocket came my insurance card and ID, The minutes crawled by like molasses. I must not forget to retrieve those items later.
I was transferred to a gurney, vitals checked again, by a friendly nurse this time.
The two EMTs still there. I apologized again. I asked him to please forgive me. Everything was starting to wobble. More questions, like if I had pain, and on a scale of 1-10, how bad is my pain. “Just in my lower back, pretty severe around a 10 ” was my answer. An IV is inserted in my right arm. “What are you doing?” I asked the nurse: “we will giving you intravenous anti- seizure medication”. “Oh no you are not going to start me on that path again.” I thought out loud.



Then finally a doctor (in a pale green dress). I love green - makes me calm. I looked at him.
“Patient has had a grand mal seizure, and says he has pain in the lower back”, said the nurse.
“ Sorry what is your name?” “Dr Dan Fox, head of ER”. “I am Minoru Freund, a Director of Research at NASA Ames. I had two glioblastoma tumors in the past 12 months. The first was resected at Columbia Univ.” and I continued to rattle off my clinical history for a few minutes. I wonder why they cannot find my medical record. I have a doctor here. His name is Shane Dormandy.” “Shane? He is a good fried of mine.”
“We will be giving you a CT-scan of your head and then some some antiseizure medications via IV. and later an x-ray of your lower back. “
“ Are you allergic to CT contrast material?” asked a nurse, while hooking me up to about a dozen EKG leads.  I was still finding contacts they left on my skin two days later.
“Look I had about 16 or so CT scans in the last 12 months, so no I get that contrast material every day for breakfast.”
“Great then will first give you the CT scan right now”.
Then I saw my mother of all people, just as they started to move my gurney out of the ER room.  She tenderly took my hand, and with lots of concern for me asked how I was.
“I need to vomit,” I said. Finally, after what seemed like 10 minutes a tiny tray, enough to spit in, but not to vomit in materialized in my mother’s hands in front of me. “Too small!!” was all I could think, but it was too late, as I vomited all my dinner into the tray, onto my mothers hair, her beautiful red wool sweater, and all over the floor. It just kept coming out. It felt great, as if a heavy burden was lifted. “ Wonderful Mino-chan Get it all out”, my dear mother encouraged me. “Don’t worry about the rest.”  The movement of the gurney was the trigger. As I was rolled away for CT scanning, a janitor started to clean up the mess on the floor.
CT scanners are awfully cool places. I always think of them as a cross between jet engines that sound like helicopter taking off in the movie “Apocalypse Now” and guillotines. Finally a few precious minutes of solitude. Then back to my ER room.

“How many seizures has Mino had until now?” Dr. Fox asked my mother.
“None. Mino never has experienced any seizures. Exactly one year ago today on Oct 5th 2009, Dr. Jeff Bruce from Columbia Univ. performed his first brain surgery. Ever since Mino was taking anti-seizure medications, first Keppra then Depakene.”
“Well then…” Dr. Fox seemed perplexed.
“Mino’s neuro-oncologist at UCSF stopped to give him any anti-seizure medication in July. She said Mino doesn’t need the antiseizure drugs anymore. At the same time she prescribed him Ritalin,” replied my mother.
“Ritalin?!?” Dr. Fox rolled his eyes. “Ritalin is known to cause seizures. Stop anti-seizure medication and give Ritalin? Crazy! It’s like inviting seizures to happen. Crazy…”

However, I was carted off again to the x-ray room. – just two quick photos of my lower back. Then back to my room.

I see Dan Fox in the ER in an animated conversation on a cell phone, so I ask my mother whom he is talking to. “Rose Lai” comes the answer. My dear neuro-oncologist Dr Rose Lai from Columbia is talking to Dan Fox, and instructing him on what to give me and what to do and what not to do with me at about 2am her time. My mother had called her. So as Dr Fox is standing upright in full attention like a soldier, rocking up and down from his toes to his heels, I can hear Rose’s forceful voice, instructing him, and all I see is a green clad soldier being commanded by my dear Rose. I ask my mother, how she came here.


The CT scan showed no anomaly, no new lesions in my brain. The x-ray scan was also clean, but my back pain was palatable. What the hell was going on, I thought since the x-rays did not show anything.
They gave me some IV drugs, Keppra as it turned out, and I felt finally some calm, knowing that Rose Lai had cleared everything. What about the pain I inquired.
That was next. “Do you have allergies for any pain medications?” they asked me: “yes I am allergic to Percocet.” “What happens?” came the question.
I had to do a full stop - and was reminded of an episode on about Oct3rd 2009, just before my first brain surgery at Columbia University. It was at 3am in the morning. I had been under intense pain, and just been given some Percocet. At that time, I was on an EKG monitor, as well as a device to measure my blood oxygen saturation level. All of a sudden I felt like a steel band was placed around my neck, and I felt like I was suffocating. My mother was fortunately at my bedside. I needed oxygen, and a lot of it. She called the night nurse, and one of the scariest episodes unfolded with me as the experimental subject. She called the night nurse again. No response… things were getting black and white. She ran out to the nurse station. Nobody there. “Help, help” she shouted. Finally a rather unfriendly burly African American nurse shows up – her name is Joyce -, and demands what the problem is.
“He needs oxygen.”
“I need to get doctor’s orders.” was the reply. “What do you mean doctor’s orders?” “I’ll have to call the doctor, and that will take about one hour and also we don’t have oxygen in this hospital” she declared. Now I can believe you have no guns in the acute care at Columbia, but no oxygen?
There is a bright yellow-labeled oxygen outlet right behind me. “Can’t give it to you”. By now, she screams at my mother over my head. While I see more black, I catch the blood-oxygen saturation drop from my usual 98% down to below 80%... on and on it goes between my frantic mother, who storms out of the room to find a more reasonable supervisor. Finally, after more than 20 minutes I receive my O2, my blood oxygen saturation value having plunged to below 55%. I could have just died. That nurse at Columbia that night was what is called a street nurse, not a Columbia employee, and she was fired that morning.
Different states have different requirements on nurse staffing levels, and New York has one of the worst at something like one night nurse for every 8 patients, while states like Ohio have much tighter requirements. Street nurses are hired off the street often quite literally, and are employed by staffing agencies in the same way as say tech support personnel, but often do not know how the specific procedures and practices at say Columbia Univ. hospital.
So back to the ER in El Camino hospital at ~11pm. So, they give me 20mg of Morphine. I love Morphine. It works like gangbusters with me.  I always get immediate relief and no side effects.
Finally, I see Jacob, and we talk about the last minutes before my seizure. He caught me just as I was stretching backwards, and just was about to fall off my chair. Fortunately, two MD’s were at the table next to us, did first aid, and held me until the EMT's arrived.
My room was full with people: my mother, Jacob, Dan Fox, a couple of nurses.
Then another surprise: my good friend Deb Feng showed up. The time just kept creeping by and it was already 2am. Where did the hours go, I cannot recall.
Suddenly, another familiar face: my primary care physician Shane Dormandy. He is a very caring doctor, and I feel loved all around. Just wished my father was there.
Dan asks Shane who the hell Rose Lai is. “Oh she is Mino’s neuro-oncologist from Columbia University.” Moreover, he adds, “She is relentless in fighting for her patients. You better do what she tells you to do, because otherwise she will be all over you.” What an absolutely perfect phrase:“ she will be all over you.”
“UCSF took Mino off the Depakene and gave him Ritalin? That is just monstrous!” Shane exclaims, having been told my story. “  It’s common sense to keep taking anti-seizure medication in cases like Mino’s – and Ritalin? Everybody knows it has a high risk of causing seizures.”
The time just disappears, but finally I am discharged, somehow magically my mother and I make it into Deb’s car. We finally arrive after 4am, exhausted but quite alive.

Postscript: This January my parents and I visit Dr. Dan Fox, and he is pleasantly surprised as we hand him a New-Years card. He looks at me, then at my parents and says words that stay with me forever: “ When I saw you the last time, I gave you at best 50 – 50 chance of making it through the night.”

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 :-)

status update...

Finally, Saturday I ended my chemotherapy with temador, after finishing radiation treatment at Stanford Medical Center the day before at a daily dose of 2Gy delivered by a 3-6MeV x-ray source. Thus, the last 6 weeks had been preoccupied with chemoradiation, OT/PT, acupuncture, and doctor’s visits. And now this has taken an enormous toll, and I find myself in a “sleeping phase”, where I require 14-18 hours of sleep every day. Thus, my lack of blog postings over the last month. I’ll try to post when I can, and I intend to write about those experiences, so please stand by... :-)

I can barely make out the sounds. They are very soft, muffled, and I just let them flow over me.  But the voices are interesting, friendly mostly. Somehow it is dark, too.  Therefore, opening my eyes, all I see at first was an unfamiliar ceiling; bright colors, fluorescent lights above and to the side. Moving my eyes downward, all I see are blankets, my arms half uncovered.
 

I start to look around. I am lying in a big room, enclosed on three sides by walls, like a bay. There is a very long happily patterned curtain in front of me, covering most of one-half of a huge sliding glass door, and the voices are coming from that front.
 

What time is it? I cannot tell; but somewhere on one wall, I finally can make out a clock face seemingly stuck at noon. Is the dial not moving? OK, let’s spend some time watching... it is moving, very reassuring. 
 
 
My head is bit elevated, my whole upper body seems to be propped up, quite comfortable in fact. Strange – last time my head, nor my body was elevated. My mind gets quiet for a while... 
OK, where am I? I do not recognize this place, but I start to recognize more sounds: rhythmic beeping high pitch behind me, and more than just voices through the curtain in front. What is behind that curtain? I am intrigued.

*****

“Last thing we need is to put your head in right over here” some soothing male voice asked me. I could not see his face. My answer was “you mean the one that looks its part of a French guillotine?” I remember many relaxed laughter; they wanted to do something with my head, MY HEAD mind you, but I felt relaxed. Finally, I was in this white plastic donut, lying on a table and looking up, and of course I see all these rotating little lights and other things, looking as always like a miniature set of a Stanley Kubrick’s movie. Then the machine started to make the by now familiar whizzing sounds of a slow-starting helicopter. A CT scanner – nobody told me that they would take another CT scan, except I should have remembered that they use CT scanners post-op. I started worrying about all the radiation this was adding, but then I remembered that I just had agreed to have six weeks of radiation therapy (3-6 MeV beams and a total of about 60 Gy), so what was just another CT-scan. Good time to fall asleep...

*****
 
I am on a bed, and lots of monitoring equipment hooked up. This is definitely the ICU. Voices through the curtain are muffled. Is it night or day? Must be post-op. 
 
 

*****

I was scheduled to undergo a resection of my second glioblastoma with Dr. Andrew Parsa on 2/17 at UCSF. My parents and my friends Jacob and Deb were there at the pre-operating room. 
 

Before the operation, we had discussed the issue of the urinary catheter with the doctors, because at Columbia I had gotten a urinary track infection. At UCSF they would also use the catheter during the operation, but would use a single antibiotic pill to prevent an infection.
 

The anesthesiologist (Dr. Caldwell), a very tall Scottish gentleman with a reassuring face soon joins us at my right bedside.
 

Suddenly, all heads turn to one side, so I see him, too. I feel sudden happiness swelling up. The by now familiar face of Andrew Parsa is entering the room. This is the second time I see him, and I greet him eagerly, asking him if he wants to be addressed as “Dr. Parsa, or as Andrew, or Andy”. “Whatever you prefer”, he replies with a playful smile. I feel reassured, relaxed. “Andy it is” I declare. We go over the procedure one more time. Then he smiles at me, excuses himself, and takes his leave. 
Soon comes the photo-op (“where is my Nikon DSLR? I ask my father, while Deb and Jacob are clicking away using their little camera phones).
 

Before we get on with operation, someone remembers that I have not signed any release forms for either the operation, or my agreement to join Dr. Parsa’s clinical trial. Soon, order is restored.


Then the by now familiar good-byes. Time flies. You really want to hold on to that moment, because you exactly and invariably know what is next:  the journey to the operating room for that second operation. That journey is another chance at life, this all-important “First Battle” to win “The War”, a very private war, which I must win at all costs. I know the rough outcome 90-95 % removal of the tumor, and something like 2-5% permanent damage. I trust Andy way too much not to.


On the way down, all I get to see are the underside of concerned and yet faces of my parents (and the stubble of my father’s unshaven and tired face), the ceiling lights, the occasional nurse or some other person in medical garbs, rushing out through some side entry, and of course as always the “transporters” – the ones that push these gurneys. Why do they always seem to rush? Why is it that the OR always seem to lie in the center of the floor in any hospital. Maybe a subtle signal about the importance of surgery?
 
 
Always that seemingly random and inevitable line, corner, or double-door where you are separated from your loved one’s, the last good-byes.
 

And then in an instance my mind forgets all that lies behind me, and I concentrate fully on the task ahead: I see the medical staff in the OR, they are prepared with my MRI images, which are displayed on large LCD’s around the room, stereotactic equipment. My memories fade. I know that Andy Parsa will take out a piece of my skull (as held in by tiny titanium screws, if it is the same piece of skull bone that Dr Jeff Bruce from Columbia removed), flip back the dura mater below, thus exposing my brain tissue . Then he will carefully place an electrode arrays to map an area of the brain to minimize damage to it, and find the best incision area. Then he will cut through my brain (including grey matter) to get to my tumor. This time he will save as much of the tumor tissue for the vaccine trial. 

*****


Thus, I found myself in the post-op ICU bays. I remember that the operation was to have started about 5:30pm on 2/17, so unless they delayed or there was a complication it must have ended somewhere before 9pm. I was not tired.

I want to call out. Nothing... That is not good. Where is my voice?
 

I try. Not much. I start to mumble. OK, I have a voice, at very low volume and pitch... I just concentrate. Don’t look at anything – just concentrate on my voice.
 

Slowly I can at least imagine sounds. The one’s from the outside of this mysterious curtain help. I press forward. Maybe I still have a breathing tube? I feel for it - nothing there. OK, now I start with monosyllabic sound, mostly imagining a sheep: “blaahh”. I go on for a while... Just a monologue of sounds, syllables, soon alphabets: German, French, English and Japanese.
 

Soon I find words. Words? Strange constructs I think. What do I remember? German words come back, my mother’s voice, her Japanese lullaby songs, childhood songs, more of them – slowly, unsteady.
 

Soon I am remembering the beautiful melodic intonation of Swiss German (actually the Zurich dialect). Suddenly the sounds invoke a picture of the Grand Vista of the Swiss Alps. It was on a train ride on the return from Interlaken to Zurich, after a conference on high-Tc superconductors in 1986 or so, with an impossibly clear blue sky, the central Swiss massive of the mountains of Canton Bern covered in blinding white.

 

I work myself into a steady stream of words. More and more, I go on. After a while, I get bored of German.
 

Let’s try some English. I go on, first tentatively, now with more confidence. I search around the wall for things to read, finding instruction sheets attached to them.  Reading them is hard. Intonation is hard.
 

Time is moving. So are my words. I start to talk more to myself, more words. I try to find more strength, and give voice more variation. I play around with my voice volume, trying to increase, then decrease, modulate it more. The grogginess starts to wear off.
 

However, I have questions: If this is post-op, where the hell is my breakfast? Where for that matter are the nurses? I start to feel around my body. EKG wires, blinking lights, IV, arterial line, beeping sounds – the reassuring monotony of it all... The catheter is still stuck in there.
 

As the clock moves on past one, slowly, the curtain is pulled back, just a bit and a smiling face appears a smile similar to the one like the cat in “Alice in Wonderland”. I smile at the smile, and ask: 
“Where am I, and what date is it?”
 

“You are at UCSF neurosurgery ICU, and it is February 18, 2010”, the smile tells me.
“Where is my breakfast? It is past lunch,” helpfully pointing my head towards the clock on the wall. I was hungry as usual.
 

“It is one-o’clock in the morning”; the smile responds (“Seriously? Barely out of surgery!”) I study the smile at the curtain, and as the smile steps into my room, it attaches itself to a nurse, and she steps forward to examine me. I do not recall much about her, but she is very nice. Soon she is at my bedside, and then as she is almost hovering over me, her feminine smells hit me. For the first time I am sure I am alive. She checks my vitals, and asks me to go back to sleep, and “smile” disappear behind the curtain.
 

I watch the curtain, as it swings back-and-forth as the air moves in and out of my room, back-and-forth, bak-and-forth… The “One-o’clock” somehow sticks to my mind, and I keep my eyes closed and soon I fall into some slumber. I try sleeping for a while, but curiosity at how it feels like to be a
live just swell over me, so soon I open my eyes, and soon sounds keep pouring out of my mouth. 
I become just a gushing geyser. I try to remember the US Constitution, instead I start to recite the end of Hemingway’s “The old man and the sea”. Most of what I remember in German is my mother’s novels. Then I seem to reach back further, and memories of decades past come back, and now time really flies with a vengeance, first I recite Voltaire’s great poems, but mostly a dozen or so poems of Arthur Rimbaud, one of the great French poets, who tragically died from cancer at a young age. His poems “Le Mal”, “Le Dormeur du Val”, and “Sensation” remain forever etched in my memories, and with it, the memories of the poems and their unspeakable beauty were even more uplifting. 
 

Trying to describe the melodic beauty of the French language to most German or English speakers is like trying to explain the melodic beauty of Mozart’s “Eine Kleine Nachtmusik” to someone who has grown up on a diet of Hip-Hop and Rap.

*****

 

Until I was 13, formal schooling was incredibly boring. I was more interested in reading non-stop, model airplanes, piano music, and classical music concerts.
 

At that moment, Winifried Bartenstein, an extraordinary French teacher entered into my life; someone who was for the first time able to motivate me to get engaged in school, but also the beauty of French literature. My Gymnasium was bi-lingual (meaning I would also earn a French baccalaureate, besides my German Abitur to enter a university in either country). He was in his mid fifties, a connoisseur of the French food, wines, literature, history, and culture in general, and a great teacher, with a striking precision his intonation of French language. I was too young to appreciate the depth of Bartenstein’s knowledge, as I still read his notes today in the many novels we read I class, like “le Rouge and le Noir”, “Les Miserables”, “Madame Bovary”, “L’Etranger”, ”La Peste”, etc. I went on to read everything I could.
 

He would use his humor to maximum effect, like when on school trip to the Provence, one of the girls, spurned by one the boys had threatened to commit suicide. (In America, counselors descend like vampires – in one of those disgusting American habits). One night, she found her way to a local lake, and as she was about to walk into the lake, he casually walked up to her, and commented: “would you like me to join you?” That broke her down, she laughing at the silliness of it all, changing her outlook on life forever.
 

Spring 1981 brought graduation, preparing for the ETH (Swiss Federal Institute of Technology) entrance exam, and tragedy, when his wife of 20+ years left him for a younger man. She was his opposite: superficial, gossipy, and pseudo-everything. He was quite embarrassed about her, though his real tragedy was he let her control him.
 

After she left, he could have just moved on with his life; instead, he started to get depressed and soon all he did was to imagine money, housing, and retirement problems, mumbling to himself, being at home most of the time. His colleagues treated him like a pariah, and students only whispered about him. 
One day, he did the predictable – he tried suicide. Oh the irony of it all!!!


The authorities immediately confined him to a mental hospital, and for a time I thought he really had gone insane, believing that other patients were to steal his underwear and the nurses were out to kill him (that was just a few years after “One Flew Over the Cuckoo's Nest” was released).  I could have never just left him in these terrible surroundings. Therefore, with my parents’ encouragement, during the summer of 1981, every sunny afternoon I would go to the mental ward, to wheel him around for hours through the green parks that circle Cologne. His face was usually ash fallen, in fear, glancing around, sometimes we would rest, his frame shrunk in a bit, and the sun on his face. I would ask him questions, sometimes he would answer, but mostly he was quiet.


A few years later, during a warm summer day, my mother and I visited him again – where his children confined him to a tiny room under the roof of one of these huge pre-century buildings, with fifteen-foot ceilings, and central wooden staircases  – and his children taking up residence on most of two floors below (incl. the one that was his former home). Dirty clothes, used dishes all over, and where it not for the open sunny window, despair would just dominate the place. There he was, unshaven, shrunk, and his eyes deep-set, with a hint of urine hanging around.


This was all that remained of that giant of a teacher, literally sitting on and surrounded only by the remnants of his former impressive library of thousands of his books – where was the rest of his enormous library? Given away I am sure. I remember his embarrassment at us seeing him in this condition, then a bit of small talk, especially with my mother.


To my utter amazement, he remembered my questions from our trips in the park, and he profoundly thanked me for the daily trips. His description of the little details of the wards, and our trip confirmed made it certain that he in fact did remember.
 

I deeply regret missing to talk to him that day longer, because he committed suicide a short time later. I wanted to ask him so many questions, about his childhood growing up on the border with France, right next to a concentration camp during the war. He told the story how he once got too close to look, and was caught by the Nazi guards, and getting scared to death, especially because his parents were known liberals, and then in 1981 not having the strength to move on with his life…
 


Besides the tremendous influence on my appreciation of language, he had a far deeper influence on my life: he validated my identity, really telling me enthusiastically how much he appreciate that my mother was Japanese. Racism and school bullying (also by teachers)in Germany  against Orientals in the 1960’s to mid 1970’s was the norm.

*****


I just talk my time away, my voice gaining ground, and I am gaining confidence in French, remembering my great teacher. I cannot get it right, but at least I try. The clock seems to barely move, so I dig in, and talk more, gaining confidence. Last time I saw him, I talked to him in French, and his voice was still in me, with passion, broken somewhat, but it was still there.
 

The smiling nurse comes in again. She seems to study me, this time again with a smile, but looking a bit concerned.

“Please be quiet, you are disturbing the other patients.”



“Is my voice so loud?” 

 
“Yes, others are trying to rest and sleep.”


I am proud of myself, but I want to be considerate too, so I smile and tell her that I will try. 
 
 
If she just knew whom in my life, she was talking about… Maybe I should tell her. I quiet down, but not only do I continue to recite French poetry (as Mr. Winifried Bartenstein’s voice remains forever etched in my mind).
 

“Please bring me something to drink.” I ask of her – I am incredibly thirsty. Afterwards, she removes a bag filled with my urine from below my bed, nods approvingly, and then tugs me in bellow my blankets. 

I continue with my recital of my language skills, and finally time moves, rhythmically, faster, and my
words and sentences are getting more surefooted.
 
 
In between, I find time to sleep. Suddenly, there is the smile again, and the smile steps forward into the room: “Please sleep”, more desperate, yet less of a request more of a command. I look at her. I nod.
She asks the standard question about pain: if I have any.
“None, I almost never have pain”. She is satisfied. 

 
Soon, I fall into a quiet netherworld between sleep and wakefulness. 


 
The clock has moved to almost two-thirty as I awake. Commotion outside, and my curtain is halfway open. I see another patient in the berth opposite to mine, unshaven, maybe mid-fifty, still on his transport gurney. He must have just arrived, or maybe he is about to leave? I decide it was the former. I study him closely. He looks barely alive, his eyes empty.

 
“Do I look like this?” No, I decide! 

 
For the first time I feel around my head, my left side feels normal – the right is shaven (whoever did this clearly has a great sense of style – I already like it), and there is a narrow bandage running down the right side of my head. No pain whatsoever.

 
I press the call bottom. The smile appears.
   

“What is going on outside?” 

 
“New patient, sorry need to leave”, and then the smile joins the commotion.

 
Thinking of having a punk haircut, I go into a faster rhythm, talking for a while in English mostly, suddenly remembering Robert Frost “Meeting and Passing”. 

 
Both joy and gratitude to be alive fill me.

 
The smile comes again after a while.

 
“The other patients are complaining about your noise level“ she pleads this time.

 
“Can you please close my door”

 
“I cannot do this.” 

 
Of course I know, she must keep the door open, to observe me.
 
 
“I have never been so happy and grateful to be alive. This was my second glioblastoma resection in five months.” I tell her. “Please understand”. 
 
 
The smile comes over, hugs me carefully. I ask for her name, but forget it. What is more important the human connection of that moment.

 
She whispers: “Please just keep it down”


“Thank you for your kindness and understanding” I say.

 
This time she smiles broadly. Maybe she will remember me, I wonder. Sometime today, she will have a new patient to care for. I look at her as she leaves – the sliding door almost closes. 
I continue with my monologue. I try anything, songs. I try the Beatles. “Yesterday” jumps to mind. Damned, I dismiss it in a millisecond. I am livening in and for the future, not yesterday, I decide. 

 
Slowly as the waking hours of February eighteenth creep up to, I continue my monologue. 

 
After a while, I ask for breakfast. Nope, but I do get a cup of applesauce. I ask for more. I get a second, a third cup. Soon I clean out the station’s refrigerator. I should have told my parents to leave a lot of food for me. 

 
Finally, dawn rises, I ask the smile to open the curtain, so I could see the dawn. 
 
 
“There is only a wall where you are looking at.“

 
“No window close by?” 

 
“Nope” I was totally off.
 
 
Soon I ask about doctor rounds. “Dr Parsa will be here shortly” the smile tells me. I continue my monologue, while I also intently listening to the beeps behind me, as well as the cacophonies of voices, machinery, and that of a waking hospital. Time passes, but for an instance, everything seems to be quiet. I hear steps right outside my bay, and as the curtain pulled back, Andy Parsa steps into my bay. 

“Look at you!” he exclaims with excitement, his hand pointing my way, his face lightening up, with a broadening mischievous smile, his eyes sparkling with utter delight. He steps forward.
 
 
“Thank you Andy. How did the operation go?”
 
 
He goes on to explain that there was a section of the tumor (~3-5% of the tumor) he had to leave in, because taking it out would seriously risk to permanently damage my brain.

“You still want to participate in the clinical trial?”
 
“Of course, and also whatever else it takes to get there.”


His smile broadens even more. We exchange only a few more sentences, and just like that, he is gone…


Andrew Lange (1957 – 2010)

From early 1990 until Andrew left for Caltech, I spent five years as a postdoc working with Andrew Lange on the US-Japanese collaborative satellite called the IRTS (Infrared Telescope in Space). Like many young, eager and aspiring Assistant Professors his ego and inner push was relentless, limitless, and directed against anything that was in his way, including students who did not perform to his standard, and tragically in the end against himself.

I had two to three conversations with Andrew on what he wanted to accomplish in life. One of these conversations I remember clearly, for it became shockingly clear to me that he had no greater plans for the future, except to be on the cutting edge of Cosmic Microwave Background (CMB) research and instrumentation; and second to “climb up” some kind of “ ladder” at “any” costs, to become a successful well respected academic, which he obviously did successfully to a certain extent.

In 1995, I went on from Berkeley first to JPL (for orbit corrections for the IRTS data), then on to ISAS (Japan) for more data-analysis, instrumentation work on HAWC/SOFIA at NASA/GSFC, then to the Air Force Research Laboratory (AFRL) Sensor’s Directorate, as Chair of the AFRL nanotech working group, and most recently as Director of Research at NASA/ARC (which includes nanotech, advanced technologies, space technology, biophysics, solid-state physics, astrophysics, geophysics, earthquake precursor research, etc.). I mention this to contrast it to Andrew’s narrowly focused interests on the CMB.

Paul Richards (Andrew’s PhD thesis advisor and mentor) was quite proud of how Andrew was doing, though they often did have their rather sharp disagreements. As Andrew was leaving Berkeley, I got hold of Paul one day, and told him that he had created a human monster. With his typical smile Paul responded – and I quote Paul: “Andrew may be a jerk & abusive of people, but he is one of those people who’ll make it as a future ‘international star’ ”, which is true.

While it is dangerous to generalize, an interesting characteristic of many academics is (especially if a collaborative environment is not facilitated), how recklessly driven they are. This may include fighting to become the first author on a paper, or secure that grant. Andrew was much more extreme, as he had a fierce & cold underlying nature.

Andrew is the closest to an emotionally empty person I have ever met. Here is a typical example:

On the fourth floor of Le Conte Hall were also located the offices of Dr. Harry Bingham, Professor Emeritus, who mostly worked at Fermilab and Brookhaven National Laboratory. When Harry retired, he gave over 2,000 sqft of his lab-space to Andrew. Harry could have given it to anyone else, and Harry also allowed Andrew to use Harry’ secretary for free. I spent many hours with Harry, who always had a wonderful sense of humor, hiding the pain of his long-term illness, behind both his smile and the many stories that cheerful told, optimistic, even during the last months, weeks and days of his life.

While Andrew was on travel to Japan in late August 1994, I visited Harry one or two days before his peaceful death. I will never forget Harry’s optimism, and I feel still feel blessed and inspired. As Andrew returned a few days later, I was eager to tell him about Harry Bingham’s passing.

So as I met Andrew in his office, I said: “Andrew, I have some really sad news. Harry Bingham just passed away.”  I will never forget Andrew Lange’s response: “What else is new?”

Going Full Circle...

It turns out that February 1, 2010 was a watershed event, because afterwards my condition deteriorated in a hurry. Before February 1, I was 100% functional, i.e. drive our car, able move effortlessly, run on the lava fields in Honaunau, etc. but from that day forward I was going downhill, fast.

I was in much worse shape than I thought. I only learned later, had I not left Hawaii, the doctors at UCSF told me that I would either be heavily handicapped now or even dead.

In any case, the cancer was within days of killing me. My parents were adamant to get me to UCSF, even though I was opposed to the whole idea of leaving paradise.

My parents and I took an emergency flight to SFO on 2/15. They checked me into the ER at UCSF, and the medical staff immediately went about treating me for my cancer.

UCSF extensive medical testing (including MRI study at UCSF) the radiologist determined that while I had correctly determined that my alternative treatments finally reversed tumor volume growth, I had missed the linear growth in one critical direction, and the tumor was growing into my brain!

This verified my parent’ s worst fears, and we had to decide how to proceed on the 16th.

Thus, late on the afternoon of 2/16, our family and my friends Deb Feng & Jacob Cohen (both are from Ames) transformed my room into a “war room”, and Jacob walked us through the simple concepts of a war:

This tumor needs to be eliminated. We cannot have ANY surviving tumor cells in my brain. Therefore, I need to fight with everything I got, with overwhelming force, meaning all tools must be considered, including surgery (that was a given, considering my condition), chemo, radiation, clinical trials, immune boosters, alternative treatments, diets, etc. I have to this battle-by-battle, and attack the tumor relentlessly.

- The first battle was the resection of the tumor.

- The second battle was going to be chemotherapy and radiation (undergoing right now).

- The third battle would use a new experimental vaccine made from the patient’s own tumor.

- I will fight on as long as it takes, and whatever battles I have to fight. I do NOT want a recurrence of the tumor.

While my parents had met with Dr Parsa (the neurosurgeon, a man of very few words even with his friends an colleagues) before, I met him for the first time late in the afternoon on 2/16. Within a few minutes, not only had I decided to accept chemotherapy and radiation as part as of my treatment, but also decided on a date for the surgery and decided to be part of his experimental vaccine trial.

So the dialog between the two of us went something like this:

"I am Dr. Andrew Parsa, and I understand you want your tumor removed."
"That is correct."

"I also heard you are interested in our experimental trial?"
 "Correct."

"So you are willing to undergo chemo and radiation treatment in order to receive the experimental vaccine trial."
"Yes, correct."

“So let me get this all straight: you will undergo surgery, then you are willing to undergo radiation and chemotherapy to be enrolled in the experimental vaccine trial?”
“Yes” I said with a certain eagerness.

"So now we need to find a date for your surgery."
“Yes indeed, and in a hurry,” I thought aloud.

My mother told me later how surprised she was, because I was so eager to go ahead with the surgery, no hesitation this time compared to the days of agonizing in CUMC in NYC.

We had on the wall a letter-sized calendar with the dates of 2/17 to 2/24 clearly marked off. 2/17 was a Wednesday, as was 2/24.

It turns out that the days Dr. Parsa does not operate on are Tuesdays and Thursdays, so that left 2/17, 2/19 (Friday), 2/22 and 2/24. He went on to helpfully explain that tumor cells "march out of the boundary of the tumor at a certain rate (whatever that rate may be), and they do this all the time", and postponing any further operation “would just make it worse, as more tumor cells migrate into the healthy brain tissue”. So forget about next week. So my first thought was: “Friday? Why wait, no reason, besides two more agonizing days to rethink my decision, plus the image of marching cancerous glio cells really is not a nice thought!” OK, now we are getting somewhere: "Tomorrow then” I said aloud “I would AGAIN put my life in the hands of a neurosurgeon.” I thought. Dr. Parsa agreed, but told us to think it over and let him know by the next morning by 7am, and took his leave. However, within moments after he left the room, we all agreed on the very next day for surgery. I was thus scheduled as the first non-emergency case of the day, typically after 4-5pm. I got in around 7:30pm on 2/17, and so my second tumor was removed at UCSF Medical Center in a two-and-a-half hour operation, which I write about (well not the surgery, which (I am sorry to say I) I do not recall at all, but the stay in the ICU.

After the operation, I should have stayed at least a week longer at UCSF. The nursing staff at UCSF is by far superior to Columbia University: The UCSF nurses were not only better, better trained, but also more compassionate.

However, I insisted on getting out of UCSF – they really wanted to keep me there, what a fool! Thus, I prematurely went into the inpatient rehab clinic (at the Good Samaritan Rehabilitation Facilities in Los Gatos), a living nightmare if I have ever seen one, and probably the worst thing that ever happened to me emotionally. Most of the patients are elderly (let’s face it: they are old) stroke patients, and many cannot talk. It was eerie. On top of that, for the first two days (and occasionally later on, too) I had constant mental freezes, where I could follow everything that was going on around me with the movement of my eyes and hearing everything, but I could NOT talk or even respond in any way.

In my state, in the beginning I was really confused (I could NOT recognize my father, even though he was sitting right in front of me), the staff was initially clueless on how to handle me, and I was emotionally a bit unstable. The therapists were quite a bit better, but I wanted/needed to get out of there.

I finally got out of this living hell on March 5 (and I cannot thank Jacob, Deb, and Hege enough to support me and my parents).

Now, I am at home! I have a full time nurse/helper during the night and a driver during the day to help me get around.

Oh, yes driving. The DMV yanks your driver’s license, once you had a major brain injury or operation. Initially, I insisted on driving myself, but that was unrealistic, so now I will get that reinstated after the chemotherapy, drivers’ education course, etc., both to relearn driving (or make sure I can still drive), and for reinstatement of your license, you need letters from your dAs compared to the first tumor, this time things are different though:

1. The second tumor and operation is ALWAYS more difficult and more difficult to deal with, because more brain tissue is being damaged.

2. I am enrolled in a phase II clinic trial using a heat-shock HSPPC-96 vaccine with the chemotherapy drug temozolomide (the chemotherapy drug of choice for GBMs), which I am currently taking. The HSPPC-96 vaccine is individualized, and based on my OWN cancer cells. The resulting vaccine is then injected into me using a well-defined protocol.

As a prerequisite, I need to complete a course of chemo (every DAY) and radiation (Mo-Fri) for 6 weeks. Radiation treatment is 2 Gy every session using 3-6MeV hard x-rays at Stanford. The Stanford radiation treatment is supervised and directed by Dr. Iris Gibbs, and as you would expect from Stanford, the technical staff is superb, and treats me as if this the best stuff for you (given the circumstances, it probably is), and as if you are being fed caviar. My body takes both treatments very well, with no nausea and no fatigue, so far :-)

I’m scheduled to go on “medical break” on 4/24 for approximately two weeks. In the meantime, I continue with physical & occupational therapies, and throughout I will continue to work with my TCM (Traditional Chinese Medicine) practitioner (acupuncture and herbs) Fred Dong.

I am improving visibly day by day. Talking about improving: a week ago, I would hardly manage to walk a few hundred feet in Cuesta Park on paved surface (and managed to almost fall on a children’s playground (it was extremely soft composite, were it not for Jacob an Deb). However, on Saturday 4/3 (and to the sheer joy and amazement of my parents), I managed to walk the full 1-mile loop on Henry Cowell Redwoods State Park, among the 250 feet tall ancient redwoods.

For the next few weeks, a typical day will look like this: Either physical, or occupational therapy in the morning, then radiation treatment at Stanford (including driving time it takes about 1.5 hours, and about 5-7 minutes for the actual treatment). In addition, I visit my TCM three times a week for two-hour session (either at 9AM in the morning or after the radiation treatment) plus a chemotherapy capsule with a tall glass water on an empty stomach just before going to bed in the evening. Once a week I see my family doctor Shane Dormandy. I am in constant contact with Dr. Rose Lai, my neuro-oncologist from Columbia. She has been instrumental in my treatment, from handling of all the medications (a not too long list), to informing us about the vaccine trial. I consider her the core of my medical team; our family would all not know what to do without her.

There is a certain monotony for the next three weeks. The vaccine trial calendar has me receive my first dose of the vaccine either May 3, May 10 or and May 17.

My parents are taking care of everything from scheduling doctors, therapists, to arranging night nurses, to handling my medications. Besides my parents and my close friends, I thus rely on my medical team, which includes Drs. Andrew Parsa, Rose Lai, Jennifer Clarke (UCSF), Iris Gibbs and her resident Michael Spioto (radiation oncology at Stanford Univ.), and Shane Dormandy, as well as my TCM doctor Fred Dong.

The experimental vaccine trial is one of small statistics; one has to wonder what kind of statistic is being used – Bayesian as it should be and as I will challenge anyone, who thinks otherwise (as I always do). As Dr. Parsa writes about the preliminary data on his website: “we have generated some remarkable anecdotal efficacy data as well as compelling immunomonitoring data.”

The vaccine manufacturer (Antigenics Inc.) is a bit more specific in their Fourth Quarter statement: “The first 20 Phase 2 recurrent glioma patients treated with Oncophage (the brand name for the heat-shock HSPPC-96 vaccine) showed a median survival of 10.1 months, with at least six patients (30 percent) surviving 12 months or longer. These early clinical data appear to compare favorably with the long-established historical median survival of 6.5 months, and with the recently reported median survival of 9.2 months with Avastin (bevacizumab) in patients with recurrent high-grade glioma. Further data updates are anticipated in the first half of 2010.”

I want to take this opportunity (this being both Easter and Passover) to thank a few people for their unconditional support here, and others. I will thank later for their emails and prayers, and their show of understanding, and love.

First of all, I want to thank my parents as I must, because this has been as much, if not more of an ordeal for them, and they are not the youngest anymore, plus for some time I was not myself, and as others will attest it was almost impossible to handle me.

I especially want to thank two of my friends: Jacob Cohen for being there any time I need him, and Deb Feng: thank you too, and for taking care of my car.

Khalid and Hege: you are the most wonderful couple. You are made for each other. Hege, please know that your warmth kept me sane during the days at the Good Samaritan Hospital, and your calming warm words allowed me to cross the threshold to our house. I can’t thank you enough for that.