My title, “Let’s not be hasty,” has a two-fold meaning.
On one hand, my local doctors don’t seem to be in a hurry to get me into the office to discuss my next steps. I have an appointment in two days, but I was hoping for sooner. After all, my tumor has gotten quite large and I haven’t been doing any treatment since Tuesday. Perhaps I’m over-estimating the urgency of the situation.
On the other, maybe I shouldn’t write-off NovoTTF just yet. I spent some time speaking with tech support today. Seems the device registered very many errors in the 33 days I was using it. I justified to myself that the error beeps the device chirped out throughout most days were normal due to heat and moisture and what not. The tech assured me that although errors were occurring, I was still getting treatment. I should have just replaced one of the parts as they forewarned me I might need to do.
Since I’ve not been prescribed any other treatment now and have a couple days wait before meeting with my oncologist, why not just put the headgear back on, replace the cable connector, use a replacement TTF device and continue the treatment? So that’s what I did today — and what do you know? — the device hasn’t indicated any errors at all. It’s encouraging but I wish I had done this 32 days ago. I’m concluding that maybe I spent the last 33 days undergoing less than optimal treatment. No point dwelling on what can’t be changed.
On this day
100 years ago today, Julia Child was born. Tina treated me to dinner at Babette’s Cafe where the menu was Julia-inspired. I suppose we were also commemorating the one year anniversary of my first craniotomy. This time last year, I suspect I was surrounded by family, completely lit on Dilaudid and Percocet, and annoyingly flirting with nurses. Tonight, I’m very happy.
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.
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.
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:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
*For anyone interested in specifics, things I’ve been hearing about include:
- Hydrazine sulfate
- Rife machine
- Flor essence
- Oleander soup
- Wobenzym n
- Various mushrooms
- Phoenix Tears (hemp oil)
- 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!
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.
- 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).
- 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.)
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.
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.
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.