Archive | July 2012

Cultural Advice

An interesting part of my journey has been meeting people. While out in public, various people, ask me about the Novocure device. Total strangers, genuinely caring.

Some people have advice for how to beat cancer. It’s interesting hearing recommendations from various cultures. To help set up my story about today’s encounter, here are a couple quick examples I’ve picked up from my previous exchanges:

  • Asian Indians tout Turmeric as being critical.
  • Japanese seem to emphasize a regimented approach with strict nutritional guidelines including tea, shiso, garlic, green vegetables, miso, tofu. Everything seasonal and fresh, of course.

Today Tina and I ate at a Mediterranean restaurant for lunch. The place was nondescript and homey. The owner, a stout, Middle-Eastern man, was bursting with panache and energy. As we paid the bill, he asked about the Novocure gear. I gave a brief, sullen answer. I was curious about where he was from and what his culture had to recommend for my situation so I asked.

He answered with a commanding voice and animated pounding hands, “I am Israeli. We know how to fight. You fight! You kick this cancer’s ass! Never give up the fight!”

When I told him that the technology I was using was developed in Israel. He said,“I know.” Well, I don’t think he actually knew that, but he explained that the best neurologists in the world are either Israeli or they study in Jerusalem.

I felt it was a story worth sharing. No nutritional advice — just an encouraging war cry: Fight!

 

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Asian Massage Parlor Wisdom

I have a great wife! Tonight she took me to an Asian massage parlor.

And… she got the full works too… right there, next to me. Oh… and my sister, Sharon, is in town visiting. She also got the treatment there in the room with us. That’s right — we all got amazing, hour-long foot massages.

The masseuse serving me, “Lisa,” was apparently a nutritionist. I had difficulty understanding her though. Not just because of her thick Japanese accent but because we had to be covert about talking with each other. You see, the boss-man would come around and firmly scold her for talking.

“Keep quiet. The customer is here to relax, not chit-chat,” was clearly his perspective. Of course, I’m wanting all the advice I can get. But, it was clear that she better watch out.

Still, Lisa was intent on sharing with me her cultures’ health knowledge — specifically for combating cancer. She would whisper snippets of advice until I gave the signal that the boss-man was approaching. Then we’d act like everything was normal until he left the room.

I can’t pass along the ancient wisdom right now. Mainly it was logical nutrition advice with some unexpected surprises. She said she would call me soon to share the full recipe to defeat cancer.


I hope it’s clear that this true story is written in a fun, joking way. Lisa was very sweet and genuine. I believe she truly wants to help me. She also instructed me to pray everyday, but made no mention of to whom I should pray. It was an intense massage and interesting meeting.

As Tina, Sharon and I prepared to leave, the boss-man asked me about the NovoTTF gear. When he heard it was cancer he revealed that he is a five year survivor. He credited his success to following the Japanese eating recommendations that he was trying to prevent Lisa from revealing to me.

Novo TTF-100A, First Impressions

I thought this was going to be easy. At least easier than taking and suffering the consequences of chemotherapy.

I’m talking about the treatment I’ve just begun — wearing the NovoTTF-100A device. It’s only about 4 pounds of equipment and some tape and wires on the head. Doesn’t sound so tough.

But in only five days of treatment, I’m weary from this. Even four pounds dangling from your shoulder constantly can be tiring. And when not carrying the device, I’m tethered by wires to an electrical outlet. I’m able to do my normal activities. It’s just a bit trickier. For instance, I went to a concert three days ago. It went pretty well but stubble on my head interfered with the connections and I had to remove the device for several hours. Not a big deal but I need to wear it as much as possible for maximum benefit. Since my tumor has clearly grown rapidly, I need to maximize time. Coincidentally, here’s a picture of a guy seated in front of me at the show.

brain tattoo

Other complications include:

  • electronics and water don’t play well together.
  • the head gear remains in place all the time. It’s like wearing a baseball cap ALL THE TIME, even to bed. I really want to take my hat off.
  • heat. The unit gets warm. Batteries get warm. Arrays on the head warm up. This will be great in winter, but not so much during summer in Atlanta.

I’m not officially complaining. I’m sure things could be worse. If it works, I suppose it’ll all be worth it. I get an MRI to see progress in about three more weeks. Success will be either no further tumor progression or, hopefully, tumor reduction.

I’m Wired with NovoTTF-100A

Yesterday I was fitted with the NovoTTF-100A device from the company NovoCure.

I was also Chicago Midway airport’s biggest security scare of the day! Actually the TSA agents were courteous and professional even though it was clear they were not familiar with the device. I did not mention that this technology was developed in Israel.

You may be able to see in the headshot that quarter-sized ceramic disks are hooked to wires and taped to my head. They do heat up a little bit but it’s not bad. Having had the arrays strapped to my head for about 24 hours, I just kind of feel like I want to take my hat off, but I’m sure I’ll get used to it.

The arrays remain strapped to my head all the time up until they need changing which could be every three to four days depending on factors like hair growth and sweat interfering with making a good connection.

Then we travel to Chicago every month to monitor progress via MRI.

This is a monotherapy (not intended to be used in conjunction with chemo). It is NOT a trial. It is FDA approved. After the standard of care Slash and Burn tactics (i.e., surgery and radiation), NovoTTF is intended as an alternative to the Poison (i.e., chemotherapy) phase.

TTF stands for Tumor Treating Fields. It’s just alternating electronic fields that are intended to disrupt rapid cell division exhibited by cancer cells.

Side Effects

So this treatment replaces chemotherapy. What are the side effects? The skin on my scalp may get irritated. That’s a lot better than nausea, lethargy and the other side effects associated with chemo. It’s a little bit of a pain to deal with lugging around these electronics and I do get a lot of stares. That’s clearly a small price to pay to stay alive.

More information

Here are some informative videos for anyone interested.

I’m glad to be using this promising treatment especially since traditional chemo did not seem to be effective for me. That’s about all of the medical update for this post.


A Final thought — Meeting new people

In the airport, Tina and I sat in some seats next to electrical outlets, so I could get some treatment time in while waiting for our plane. None of the outlets on that wall worked. So I began to walk around looking for another outlet. A gentleman waved me over to use the outlet his phone was charging on. He asked about my strange head gear and in fact recognized it because his boss was none other than Bill Doyle — the venture capitalist who helped fund NovoCure in this venture. I knew the name Bill Doyle because of his video on ted.com about NovoTTF, which really got us excited about the product. See the video here:

http://www.ted.com/talks/bill_doyle_treating_cancer_with_electric_fields.html

It felt like fate guided me to meet this person. It was very encouraging because he said that Bill Doyle is very sharp and if he chose NovoCure to invest in, it’s because he’s confident that it’s going to be a success.

Shaved and Ready

I shaved my head in preparation to be fitted with the NovoTTF-100A device. Tina and I fly to Chicago in the morning. I’ll post quickly about all the details. Below are just some other things that have been going on in my life.

Latest MRI

I had another MRI last Saturday in order to have a baseline for monitoring the effectiveness of the NovoTTF treatment. The preliminary reading of the images show that the tumor is growing. This seems like pretty bad news to me but it’s not getting me down. I have tremendous faith that these Tumor Treating Fields (TTF) will quell the tumor growth and even shrink the son of a bitch.

Fitness

Since my oncologist has me on a testosterone supplement, I’ve been very active. Going to yoga classes at least four days a week. Kicking and dribbling a soccer ball around the park. Bicycling around the block. And a bit of weight lifting. Today I bought a pull up bar. I’m convinced I still have time to develop a nice physique — something I never really cared about in the past. The ultimate rationale though is that a healthy body has a better chance at fighting disease. Thanks, Kevin G., for the training advice.

Placebo

All that time I participated in the immunotherapy clinical trial (ICT-107), we thought I was getting the real vaccine because I suffered the flu-like symptoms. But recently I learned that the sponsor likely puts something into the placebo to simulate the same symptoms. Boy, that made me mad. I’m over it now. I knew the chance I was taking. Still, it’s no fun to feel like a lab rat.

Alternatives*

Interesting people continue to come into my life. By chance, I am running into people who have experiences and opinions about the curability of cancer. The information they share with me is extremely encouraging. But research online reveals contrary views on these natural cures. Of course, I want to believe that something exists that will fix me and I do believe there is a lot I can do via nutrition and natural resources that can dramatically help. I’m not giving up on medical science though. Thanks, Stephen T., for helping me keep a healthy perspective on my situation.

Art

Yes, I have been painting on canvases, not just chalking sidewalks. I’ll post some pics eventually. But I want to thank my friend and meditation mentor, Nathan P., for giving me this creation of his.

N8P Skull art

Mementos

My friend Marcus M. was inspired to send me a spiked biker helmet, which reminded me of one of my favorite TV shows as a kid — Hogan’s Hero’s so I did my best Sergeant Schultz impersonation.

And thanks to Martha B. for the nice scarfs (or stole) that she made for Tina and I. She put a lot of thought and symbolism into the design and colors.

My apologies to the other hundred people that deserve a public thank-you from me on this blog. Everyone has been so kind, supportive and generous. It means the world to Tina and I.

Sadness

Every week someone contacts me about themselves or a loved one being diagnosed with my same cancer. I mention this so that you might be aware that the numbers are staggering. Cancers are striking everywhere. Why? I can’t tell you exactly, but there certainly has been recent verifications about cell-phone radiation being very dangerous especially to children. We know the practices in food production are problematic. Big companies aren’t going to be responsible. Doesn’t seem like government is doing much about it. So take responsibility yourselves. Just think if the statistics said you were going to die in December. Might be worth paying more attention to what you do and how you think.

More Crying

Again, I hate to share this, but at the very end of a yoga class this week, we were seated on our mats and finishing with a final añjali mudrā when I inexplicably started sobbing. I have no idea why. I wasn’t thinking about anything at all. I haven’t been sad or depressed. It was weird. Luckily I was the only guy in the class. I kept it under control and it was brief but I’m sure it was noticeable by some. The teacher explained that it’s part of yoga. I’m paraphrasing, but we carry emotions in certain areas of the body and certain poses can help release those emotions. I tell you what — I felt great after class.

Anger

Don’t think I’m this well-grounded, peaceful, at one with the Universe person now though. A driver made an illegal, and dangerous maneuver in order to get ahead of me and into the parking lot… OF THE YOGA STUDIO. It took all the tenacity I could muster to not confront her about the error of her ways. And why not call out people when they do asinine things? Seems like anger is as legitimate a feeling as is joy. I guess I have some more learning to do.

Namaste


*For anyone interested in specifics, things I’ve been hearing about include:

  • Hydrazine sulfate
  • BHT
  • Rife machine
  • Flor essence
  • Oleander soup
  • Wobenzym n
  • Various mushrooms
  • Phoenix Tears (hemp oil)
  • Salt
  • And even regimented procedures for how and when to drink WATER as a cancer cure

I’m all ears if you have an opinion to share!