Pseudo-retirement
Today was Tina’s last day of work, hence the title pseudo-retirement. She resigned from her job so we could spend some quality time together; travel a bit; see some family and friends. So to celebrate, I made a fantasía meal for dinner. Fantasía just means a meal thrown together with whatever you have on hand. I learned about fantasía from Tina’s aunt, Maija, one night in Dénia in the province of Alicante, Spain.
In case anyone was suspicious of my stories in the previous post, I submit to you the multi-course meal I served tonight.
- Beehive Cheese Company’s Squeaky Bee Smokey Jalapeno Cheese Curds and Wickle’s pickles
- Hard boiled egg with 2 year old homemade kimchi
- Farm fresh carrots braised in yuzu juice with orange marmalade roquette salad
- Shiitake mushrooms and local Imperial Sweets onions sautéed in coconut oil
- Roasted red snapper with home brewed kombucha sauce over flame-wilted bok choy
- Hanger steak tataki with nama shoyu and ponzu served with red quinoa salad
- Beef, strawberries, cilantro, habañero spring rolls
- Garden-fresh, sliced, Etowah county tomato and St. Agur butter cream blue cheese with Noble Tonic 03 maple matured sherry bourbon oak vinegar
- Toasted essene bread and butter
- Sautéed sprouted tofu with black garlic and nori komi furikake
- Three-flavors dessert — matcha nama chocolate (green tea white chocolate from Kyotofu Bakery in New York); High Road mango chili lime sorbet; pecan/date raw brownie (homemade)
The food snob
It’s pretty well known by those who are close to me that I’m (shall we say) particular about food. Ask any of my former co-workers — they’ll corroborate these work stories.
While the others ate left-over spaghetti, to-go or frozen food at the lunch table, I was prepping fresh gremolata to sprinkle on the leftover lamb shanks or Oyakodon that I spent hours preparing the night before.
Whenever an impromptu group lunch outing was being planned, inevitably, someone (usually Nathan) would say, “Ask Ken where he wants to go — he’s the picky one.” It was understood that he meant, “…he’s the pretentious food nerd.” But it was really a playful label of endearment. I think because I didn’t have children to occupy my time (or talk about at lunch), I compensated with culinary adventures.
These stories are sensationalized a bit. Certainly I ate plenty of junk and fast food back then too. Nor was I the only one who ate well from time to time. I seriously doubt I was really pretentious about food (or music). That was just one of my fun personas in the office. We all exploited and enjoyed each other’s idiosyncrasies. Now that I am not employed, I look back with fond memories of an irreverent bunch of co-workers that became as familiar as… family.
Anyway, back on track with a story of my continued food snobbery.
I was disappointed that the free snacks provided at today’s brain tumor support group meeting were unhealthy, junk foods as usual. No one but me cared. I planned ahead though and brought my own fresh fruit on which to nibble.
Pictured on this post is my first attempt at making a healthy sweet treat — raw brownies. Pecans, dates, raw cacao powder and a touch of agave nectar — that’s it. No cooking involved. They’re yummy.
So instead of gastronomic flamboyance, my food-snobbery now is more about advocating healthier eating.
By popular request, here’s a link to the recipe from the Rawtarian website: http://www.therawtarian.com/raw-brownie-recipe/
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!
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.
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.
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!
I’m EGFRvIII positive
This is just a quickie, fun post while we wait for real news about Chicago/Novocure plans. [EDIT: It was supposed to be a short one.]
Clinical Trial — NCT01498328
While we were waiting to hear about Novocure, we got my tumor tested to see if I qualify for another trial. Only about a third of people do test positive, which is the requirement, and mine came back positive. That’s good news, but as I read the consent form I realize again that it’s not for my benefit. This is for the benefit of medical science. I did my part with the first trial. Why risk side effects or chance getting the placebo? I want to do things that make me feel I’ve got a chance.
Having Fun
It’s a little freaky, but my Photoshop aficionado, designer friends will understand the urge to play with superimposing my head into the Novocure product photo. Here it is:
I anticipate stares and strange looks in my future.
Healing Sound Frequencies
I’m hesitant to share this, because it was a little embarrassing. Yesterday I went to an event promoting living (raw) foods, healing therapies like infra-red sauna, foot baths, and so on. One of the presenters, “Assention Ambassador” Astarius Miraculii, sang what he called a healing sound frequency. As he suggested, I participated by closing my eyes and setting an intention of seeing myself tumor-free and healthy. As he sang, an unexpected thing happened. I cried, a lot. I couldn’t stop it. I was silent and not a bawling wreck, but still it was hard to control. I rarely get this emotional so I guess I just needed a release. Anyway, here’s a link to a video of what he sang. (If you get fed up with the introduction, skip ahead to the one minute mark).
He then went on to play the didgeridoo, which was very nice as well. I won’t be seeking counsel from him but it was nice to see once.
SmartPhone Radiation
As I left the event, I was compelled to speak with the parents of a group of young children I saw inside playing with cell phones and tablets. I had just watched a video by Dr. Mercola which presented facts and studies about cell phone radiation. I was always suspicious of my cell phone’s role in my tumor. Children are very much more susceptible to this radiation than adults. The video is long but the information is compelling. The father was appreciative that I brought it up.
» Here’s a link to the information.
When I was going through the unpleasant process of daily radiation, I saw infants and young, bald children having to endure even worse procedures. Parents, please be mindful of technology and diet for your kids.
Greed
I dislike sounding like a conspiracy theorist but it seems like greed is the root of all the bullshit that makes life more difficult and dangerous than it needs to be. Exploiting shortcuts without regard to the effect on the masses for the sake of big profit seems to permeate every industry — technology, food, medical, finance and on and on.
Sorry, this was supposed to be a short, fun post, but got kind of gloomy there. Have a great weekend and Fourth of July coming up!
Approved for Novocure
We found out yesterday that I’ve been accepted by Northwestern University in Chicago to use the Novocure TTF-100A device. We had to push for it. They wanted me to first try Avastin and experimental chemo drugs. I want to try Novocure first.
What is it?
The Novocure TTF-100A uses “tumor treating fields” that are delivered to the tumor by applying electrodes on the skin. The fields can kill some of the dividing cells and has no apparent effect on cells that are not dividing. (In the brain, most of the dividing cells are tumor cells).
Does it work?
Here are some statistics from some trials.
As of December 2011, two of the original 10 recurrent GBM patients from the pilot trial are alive and well over 7 years after starting the trial. (I don’t know about the other 8.) The device by itself was compared to the best available chemotherapy.
There’s no way to say, “it works.” It’s just another tool. It’s not an alternative treatment — it’s a new form of standard treatment.
Pros
- No side effects! (no nausea, lethargy, appetite suppression, sores or any of the other horrible symptoms experimental chemo can have.)
- It is FDA approved, meaning it’s SAFE to use and insurance will most likely pay for it (and it ain’t cheap).
Cons
- I have to wear a skull cap of electrodes (most likely all day every day)
- I have to carry around a backpack or shoulder bag containing the electronics.
- I have to travel to Chicago, probably monthly (and Chicago ain’t cheap either).
Maybe I’ll be able to modify and customize the gear so I don’t look like an electric chair escapee. If the headgear fits under a motorcycle helmet, I’ll be just fine.
That’s the end of the major medical update. Thanks everyone for your support and comments. Below are just some personal updates with a humorous slant for anyone interested. In fact, the content may not be suitable for all audiences (mom). (Just kidding, I know you’ll read it all.)
Manly Man
The results of my testosterone test showed that I’m low. I blame it on the Dexamethasone I had to take after surgery. Today is my first day using a testosterone gel. I rubbed it on my shoulders this morning and… went to a yoga class. (I know — that seems kind of girly for being pumped up on testosterone. And that’s another joke. Yoga is a great practice that I value and recommend for everyone. Plus, girls in yoga outfits? Yeah.) Anyway, after this post I’m going to take a long vigorous bike ride. It could be in my head, but I think I feel bursting with energy.
Damn Narcotics! — The “E” word
The pain from the surgery has subsided so I tapered off using the opioid, oxycodone. Unfortunately, I did not continue the Docusate Sodium (stool softener). If you don’t know, narcotic pain relievers cause constipation so you increase fiber and take a stool softener — or you’ll be sorry. Well, I quit that part too soon and have been paying the price.
It gets more graphic from here, so don’t feel bad about skipping to the next section.
I’m not talking about the pain involved in passing a large, hard stool. I’m talking about abdominal pain that extends to the testicles and penis. The second worst pain I’ve ever had (the first being kidney stones). So I decided to violate my “exit only” rule and got an enema kit. It made a little progress, but more help was needed. I was going to try castor oil, which is supposed to be fast acting and tried and true. But I opted for a liquid glycerine suppository. That worked QUICK. I’m not out of the woods yet. I think one more day and I’ll be completely free of this burden and will never make that mistake again.
Art
I have been doing some painting but I’m not ready to show anything. But I did scribble some chalk drawings on the sidewalk yesterday. Can’t really call it art, but it was fun.
Maiden England 2012
I’m a metal head. Turns out it wasn’t just a phase when I was 15. Heavy metal legends, Iron Maiden, who I have never seen live, played last weekend in Atlanta. Some great friends came from as far as Louisiana, Southern Florida and Alabama to take me to the show. The show was great, but experiencing it with good friends really made it special.
Walking through the parking lot while people were tailgating, I overheard an arrogant critique of my hair style (mostly bald with a patch of hair in the back). I turned to make eye contact, but remembered the bicycle confrontation I wrote about in the Why Can’t We All Get Along post. If it’s not important, don’t waste any effort.
Slayer and Motörhead play July 14th. I’ve also never seen Lemmy and the gang, so come join me for that show.
Vous Et Nul Autre
This blog picture is of the brick that Tina and I bought to support the 1996 Olympic Games in Atlanta. The inscription, vous et nul autre (you and no other), is the commitment we made to each other that year when we got married.
Monday night, we read in the July 2012 issue of Atlanta magazine, that Dr. Ian Crocker is one of Atlanta’s Top Docs. Ian was my radiation oncologist up until last October when we no longer needed his services. We liked him very much.
Tuesday morning we met with him to discuss stereotactic radiosurgery. Remember that the surgeon left a small bit of tumor in my brain rather than risk compromising my left arm function. Our thinking was that he could blast the remaining tumor with high-powered x-rays and make me tumor-free without damaging healthy cells.
Dr. Crocker let us know that radiosurgery is not the solution we hoped it would be. Because that area of my brain had already received the traditional radiation therapy dose of 60 Gray, more radiation was likely to lead to tissue necrosis — dying cells. Dying brain cells could mean… all sorts of unpleasant issues. Even if he were able to successfully blast away the rest of the visible tumor, there are likely to be lots of microscopic cells that are just waiting to sprout into tumors that he could never eradicate. Too much risk for not enough reward.
Although the doc didn’t have any good news for us, he delivered the news compassionately yet straight-forward and professionally. He answered all our questions. He cared. I agree with Atlanta magazine — he’s definitely a great doctor.
Plan B
Plan B is to pursue the Novocure product. I’ll have to wear strange head gear and carry a sack of electronics. But that’s a small sacrifice for being able to live longer. Right? I just heard from Northwestern in Chicago that they can’t recommend Novocure alone for me. They suggest I consider other standard of care treatment, like Avastin in combination with other chemo drugs. They made no effort to explain why. It seems like just a turn-down letter.
It’s getting difficult to remain positive. On to Plan C, I guess.
UPDATE: This just in. Apparently, Novocure is back on! A determined wife is hard to stop!
Survival Numbers
This is not a very pleasant topic to think about. If you’re particularly sensitive, just skip it. “Knowledge is power” is my stance. We already know that 15 months is the median survival time from initial diagnosis and that’s with optimal treatment, which I think I have received. Median survival from the time of tumor recurrence is only 3-5 months without additional effective treatment. This data puts my expected death date around the end of 2012.
Novocure can potentially slow or reverse tumor growth. But as far as extending survival time, it’s not really any better than the best available chemotherapy. So maybe that buys me another six months or so (statistically). The big advantage is quality of life. There are not really any side effects to deal with.
Don’t worry — I still feel like miracles happen. I expect to beat the odds. But plenty of discouraging things have happened to me. The standard chemo isn’t effective on me. The trial wasn’t helpful. Radiation is out of the picture. Future surgeries are risky. A Novocure provider isn’t interested in helping me. I need to find something effective on this tumor.
Big Questions
I’ve spent some time considering my options and the implications of my choices. It’s easy for thoughts to wander into philosophical subject areas. What’s life all about? What (if anything) matters? I think I’d like to live a long life, but does it matter whether I have six months or six years? I know some people will miss me, but life goes on.
Do I continue with experimental treatments and become a health nut? Or are there better ways to spend my time, money and current good health, like spending time with friends and family and experiencing the wonders of this world? With no children, I have no responsibilities really.
Don’t get the wrong idea. I’m not depressed about all this. It’s more like disappointment with a twinge of anger and frustration. Luckily this weekend a pack of good friend are traveling to Atlanta to take me to a rock show. There’s nothing like getting together with old friends to relieve some stress and aggression.
Ways to Help
Your thoughts, well-wishes, encouragement and positive vibes are a big help. Financial donations to my fight are welcome as well. Please visit my Donate page for an explanation of how and why donations are helpful.
Meal Train
Sign up to bring us a meal via Meal TrainMEALTRAIN WAS A VERY HELPFUL RESOURCE FOR US BUT NOW IT HAS EVOLVED INTO BRINGING US SPECIFIC UNCOOKED INGREDIENTS BECAUSE of the wtict diet we are on.This is just as valuable to us though..
A glioblastoma journey 