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More Disappointment

More Disappointment

I had a CAT scan on Tuesday to determine if my tumor stopped bleeding. It seems to have stopped. [Yea!]
But, It was determined that that tumor has grown about another centimeter. [Boo!] (Crowded skull = More seizure risk = not good for motorcycle riding.*)

More Drugs

Duke wants me to get back on IV Avastin tomorrow (Friday). Remember that Doctors speculate that the Avastin caused the bleeding in the first place  but it’s also the best chance to shrink the tumor. It’s all a gamble.

Symptoms
Since there’s swelling going on in the brain, I’m going to start taking the steroid Dexamethazone (Dex) again. Because the tumor seems to be going strong, it’s finally pissing me off. Because of this, I’m already in a volatile mood. We know from past experience, that Dex makes me hyper and aggressive (or you could say, an ass – ask Tina). So they gave me some Ativan in case I switch from Jekyll to Hyde.

More Doctors

Next week I head to the NIH in Bethesda Maryland to see what they have to offer and suggest up there.

Wednesday, I had an appointment with someone new — a pranic** healer, Deborah Quibell. Later I will meet with her partner, one of the only ten Master Pranic Healers in the world, Hector Ramos (http://alicorninstitute.com/sessions/hector-ramos/), because he is in Manilla now for a few weeks time.


**Pranic Healing approaches energetic health and wellness in a clear and systematic manner, understanding the comprehensive energetic anatomy of the body and aims to help the client maintain a state of balance and good health on all levels – physically, energetically, emotionally, mentally and spiritually.

More Pain

Jan bikingNot physical pain. Mainly mental/emotional.

I’ve had a few angry moments lately. Luckily, Wednesday was a sunny day so I went out and put some miles in the saddle. (I couldn’t possibly have another seizure (right?). But I go slow(ish) and point away from pedestrians.   [and went on four long walks with Tina]. Neighbors and friends are vigilant in supporting and helping us.  [and we are both over the moon with joy that the Meal Train has started back up again!]

Note: Text indicated in BLUE above was snuck in by guest writer and caregive, my beautiful, patient wife whilst I lie sleeping.You could tell it was too cute for me to write, yet it’s all true.

Bedtime — More Infusions tomorrow

I’m going to hate getting in that infusion chair again. Looking around at a bunch of poor sick bastards. It’s kind of friendly and comforting actually. But i I thought I was in a bad mood yesterday, watch out for me on Friday.


Sorry I didn’t have any useful information to provide to others going though this too. If you haven’t seen Chad Mossman’s blog, he captures great info and data bout his journey. It’s a worthy read Aqt http://aheadofcancer.com/


Mommas don’t forbid your babies to ride motorcyleS. Just teach em to be smart , safe, fun, thoughtful

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Cognitive Dissonance

My December

Recently I have had the occasional, fleeting feeling that I am in My December.* I dismiss the feeling easily after giving it brief consideration and get back to focusing on feelings of well-being.

The other day, I glanced at the microwave to see what time it was, and the display read… END. (Creepy)

end

Bloodshot

But now that I’m telling you about it, I’ll admit it worries me a little bit. And in addition to that, I’ve got some notable symptoms going on: a low white blood cell count, a couple days of inexplicably, constantly bloodshot eyes and possibly some blood in urine and stool. Pretty scary, huh? No, not really. It’s minor. I have no pain and I feel pretty good.

eyes

I have an appointment with my oncologist in the morning. I really need to see my white blood cell count rebound. So I won’t bid you a Happy New Year just yet. I’ll post the outcome of my appointment before then.

My disposition has not changed. Another Spring is around the corner for me!

Come what may,
Ken

*I think “December” is a common metaphor for nearing the end. I mention this in case my intention wasn’t clear. Hey, I studied math and art. I know little of language and literature. (Hell, I know little of math or art too.) However, I am learning a bit about quantum physics, metaphysics, nutrition, compassion and Love.


killua-production

Tina snapped a photo of me painting labels for the 2012 batch of Kill-u-a. Notice that I’ve had to resort to using reading glasses. At least it makes me feel like I’m getting to experience “old-age” a bit.

bottles

The Human Condition

How have I been?

  • Physically, the new treatment is not as taxing as the previous therapy. I’m maintaining weight at 150 pounds. I’m too skinny, but I’m strong and feel good mostly.
  • Mentally/Emotionally— It’s a strange time for me. I’m not ready to die but I give the matter due consideration. I have ambitions and aspirations still. But honestly, death doesn’t scare me in the slightest. I’m not giving up by any means. My thinking is extremely positive even though I do venture into darkness from time to time.
  • Spiritually – I’m reluctant to blog about my beliefs regarding spirituality because it’s a very personal thing. What I believe, feels right to me. There’s not much point in sparking religious debate here. People of varying faiths support me. I appreciate and respect all support.

New Treatment

I have completed three days of my new chemotherapy (Vorinostat and Temodar). The new program is very regimented. I take Vorinostat for seven days, then take a break for seven. I take Temodar every single day though. There’s also a variety of pills I take to offset side-effects.

  • Despite the strict timing of meals and taking drugs, it’s easier to take pills at home rather than go to a facility to receive IV infusions.
  • Side-effects are also less severe than the previous therapy of Avastin and Irinotecan. But my previous experience with Temodar let’s me know that I CANNOT miss taking anti-nausea medicine or there may be Hell to pay.

Next Steps

I get a CT scan in early January. We’re hoping to see bleeding stopped. This will reinforce the decision we made to switch chemo-therapies. Later will come an MRI, where we will hope to see tumor reduction.

Thanks for reading my update. That was it. What is written below, could just be the incoherent ramblings of a man with a brain tumor who thinks he knows better than others.


Every man takes the limits of his own field of vision for the limits of the world.
― Arthur Schopenhauer

This has been a recurrent theme in my experiences and interactions lately.

Just before publishing this post, I did a search to see how many people were diagnosed with GBM in 2012. I stumbled upon a comment to an article that threw me into a tail-spin. It began,

Positive thinking is all fine and dandy, but it’s not going to save anyone’s life.

Well of course I know that I’m not going to be cured by positive thinking alone. The comment continued,

…positive thinking contributes nothing to the end result.

I replied sternly to the comment, which can be read here: http://www.news-medical.net/news/2006/01/02/15159.aspx?reply-cid=f2b13d48-f48f-440a-bff7-424b3861c6ff#id_f2b13d48-f48f-440a-bff7-424b3861c6ff
It’s the comment by HopelessTomorrow on Oct 21, 2012.

Holistic

I have heard it said many times that the body can heal itself of ALL maladies. It requires serious conscious effort  such as nurturing the body, mind and spirit properly. Only part of recovery is medical treatment. There are other components that most of my medical doctors don’t seem to care about.

I have been listening to guided meditations every night lately. Sometimes I listen to relax. More often I listen to healing-centric meditations. I think everyone could benefit from meditation.

I am taking a lot of supplements now. Previously Duke advised that many supplements would interfere with the efficacy of chemo. I don’t refute that, but I am now also under the care of Dr. Bhatia of Atlanta Center for Holistic and Integrative Medicine. She’s a medical doctor also well-credentialled in holistic medicine. She was on the Dr. Oz show recently, which I suppose speaks to her credibility. She prescribed several supplements that will not interfere with chemo and will keep my immune system strong (and my chakras balanced). There is some level of assurance because of Dr. Bhatia’s high profile. But I really miss Lisa, my previous acupuncturist/practitioner of Chinese medicine who recently moved out of state. (Thank you, Lisa, for caring for me along my journey.) I may have to venture over to Buford Highway and find a wise, old Chinaman.

Yoga has been a great healing tool for me. It keeps my body strong. It calms my mind. I think everyone could benefit from yoga, too.

Drugs

I’m prescribed lots of drugs that MIGHT help the cancer and they generally make me feel very bad. They hurt my body. So doctors prescribe more drugs to help cope with the side-effects. One drug that has been marginally effective is Marinol, which is synthetic THC (one of the cannabinoids in marijuana). It helped a little bit with my nausea and lack of appetite. But I have been to places where medical marijuana is legal and I know first-hand that real marijuana is much more effective than synthetic. The real deal has many more cannabinoids that make real marijuana a much better option than whatever drug companies concoct and the FDA allows me to use. Unfortunately I live in a state where marijuana is not legal even for medical use. I hope that anyone opposed to legalization of marijuana can take the word of those who suffer from terminal cancers, HIV, chronic pain and PTSD that marijuana is a helpful, healing, natural herb to be embraced — not a dangerous drug. Instead of paying a lot of money to drug companies for barely effective, synthetic medicine, real help could be both affordable and available to me.If that’s not good enough, then look at the science. Research has been done for decades and around the globe about how marijuana can be used for more than treating symptoms — it could be a primary treatment. I don’t want naysayers to have to get cancer in order to reach the level of desperation to look into the facts of how marijuana provides real hope and healing. But I also don’t want my freedom and health to be restricted because of ignorance and greed. If legalization comes up for vote where you live, please help. I don’t want to move away from my home in Georgia. I don’t want to break the law. I want to be free to do what I know can help me. Regulate it, tax it, enact reasonable laws that balance public safety and liberty. I would be happy to debate the issue with anyone not convinced.

Welcome to the Club

Last week I was contacted by two people newly diagnosed with glioblastoma multiforme. Brain cancer hit me out of the blue. It’s catching others by total surprise too — appearing suddenly with no cause with which to attach blame. There is a grueling, life-changing journey ahead of these people. I fear our society is in need of big changes that just aren’t going to happen until things get much worse for many more people. If I could appeal to my friends to make one change, it would be to start with food. Be mindful of what you eat — of what you feed your children. Food and eating right could be so simple. Unfortunately, money, greed and power have convinced us over time to nourish our bodies with crap that is making us fat and sick.

Love,
Ken

Infusion #4

Today I had my fourth chemo infusion. This time, Avastin was excluded. This is not good news because Avastin is the key drug that everyone has their money on as being the most effective at fighting my tumor.

Below the Belt

So the abdominal pain I blogged about previously is cleared up. Drain tube is removed. No more pain. Doctors are not clear whether I still have an appendix or whether it perforated/ruptured three weeks ago.

Options Review

An MRI to see if this chemo regimen has been effective will be done in two weeks. Then we’re off to Duke to discuss options. Here’s a quick review of modern-medicine best-of-class tactics tried so far.

  • Temodar — FAIL
  • ICT-107 trial — FAIL
  • Novocure — FAIL
  • Avastin — FAIL

Shit, all the good choices are gone. Avastin MAY be reconsidered in the future. There are more clinical trials; more alternatives; MORE HOPE. I’m not concerned. At least, I don’t consciously think I’m concerned. I notice that I began erasing myself from LinkedIn — leaving Groups that are no longer relevant to me. I’m almost done creating succession plans for my freelance web and design clients. I’m not doing this because I think the end is near. Maybe I just don’t want to go back to that life or career. I have options for that when the time comes.

How am I Feeling?

Despite some bleak news above, I still feel physically, mentally and emotionally strong. The weather is fantastic. I’m dying to take my motorcycle out for a spin. The only thing stopping me is my own caution. No sense risking overdoing anything right now.

I was hyper-aware of motorcycles today though. On a walk today a bike passed by and I noticed how good it sounded as it’s deep rumble faded down the road. Same walk, I saw a young girl riding a Honda 50 that resembled the one I rode when I was 13. I vowed to revive my ’82 Shovelhead and do some Fall riding.

I may have wasted almost an hour creating this image. Actually it was fun. Superimposing two photos of me, forty years apart, and making a stupid shield. (Only thing missing is a Jim Benson critique). I think from time to time I miss playing in Photoshop. In a way it’s like reconnecting with my former life, working a job, not concerned with mortality.

Food Train

As much as I love cooking, I’ve noticed a decreased interest lately. Months ago a neighbor volunteered to sign us up for Food Train — a means for friends and neighbors to volunteer to drop-off a meal or some food. So I finally gave in. Here is a link for anyone interested in participating.

http://www.mealtrain.com/?id=m4c7myai51yt

 

Six

I’ve been critical, judgmental and one-sided in my latest posts. But I have now reconsidered my position on some things, such as salutations, generalizations and the effectiveness of universally recognizable emoticons. Thanks to those who shared an opinion. Sorry if my tunnel vision disrespected anyone. I think I should just keep this blog focused on my wellness updates. I’ll try to tone down the commentaries.

But first another apology. Sorry to the few ladies on my street to whom I’ve shown off my blood drain bag. It didn’t occur to me that you may not have been interested in seeing that. It’s kind of gross.

E. coli

We heard from the infectious disease doctor today. My infection is from basic E. coli.

Good, because it’s easy to treat and I am already taking the right antibiotics for it. And, there may not be anything wrong with my appendix.

Possibly bad because Avastin is probably the cause. I will discontinue using it (at least temporarily). The abscess caused by this bacterium may be from a gastrointestinal perforation. (Don’t search the Web for more details — it ain’t good). But, these are still just assumptions. More information will be revealed to me at my follow-up appointments on Monday.

My caregivers have to take care of each other too.

Caregivers

Tina manages my wound care with vigor and tenacity; without fear or hesitation. She takes care of everything. And Mila, tends to me just as diligently. Maybe that’s the female nature. They support each other too, which is good because I’m quite unreliable and selfish.

Drugs

I’m weakened by this injury and the drugs used to treat it. Synthetic drug treatments may be helping me but they are definitely hurting me. I wish I could just say no to these drugs1.

Maybe nature offers better hope. Cannabinoids keep coming up in cancer research2 — not just for the treatment of nausea and appetite, but to kill cancer cells. Many people hold some power to affect the repeal of marijuana legislation so more research and clinical trials can be done. It is my hope that all those people begin to use that ability now to implement change (even in Georgia) or else become intimately affected by the desperation of terminal cancer.

Conclusion

Most times that people see me – I’m a One. Lately Six has been common. I’ve had my fluctuations up to Ten though. May you be Zero. Goodnight. (Edited to add: I’m talking here about physical pain, not emotional or mental state. It was a reference to my previous post criticizing the standardized pain scale.)


Footnotes

  1. Pharmaceutical drugs I’m referring to include: hydrocodone, bevacizumab, irinotecan, dexamethasone, temodar
  2. There are probably better sources to reference, but this seems like a good start for the disinformed: New Study Adds to Research Showing Marijuana Could Stop Cancer, Mitch Earleywine, September 24, 2012

Released from the Hospital

CT Guided Aspiration Drainage

Blood bag strapped to thigh — My latest fashion accessory, just in time for Halloween.

I started my day with a gurney ride to Radiology. After downing a bottle of contrast, my food-starved, narcotic-fueled, sleep-deprived body was barraged by waves of trembling and voracious teeth chattering. Basically, reactions to being cold except they were very exaggerated. CT imaging revealed an abscess in the vicinity of my appendix. An area below my navel was numbed with topical anesthesia. I was infused with benzos to relax. I suggested they just knock me out! I really didn’t care to FEEL or remember the procedure. I did not get my way. But it was quick and mostly painless.

Two weeks ago, the oncologist assumed my GI pain was a kidney stone or urinary infection. Now, she suspects that my appendix ruptured. The goals of today’s procedure were to:

  • remove fluid, thereby reducing pressure and relieving some pain;
  • collect samples so that the Infectious Disease team can identify specific bacteria present as well as the proper antibiotics to combat the bacteria and remedy infections;

We need to treat infection with antibiotics to avoid, or at least post-pone surgical removal of my appendix. Avastin compromises cell health which would complicate recovering from surgery. Avastin is known to cause GI complications and is probably responsible for all this trouble.

Conclusion

I was released from the hospital today.
My own self evaluation of my overall wellness is entirely positive!

When unexpected complications arise, I’m reminded that October is the month for me that corresponds with the ominous 14 month death statistic. Despite a few recent hindrances, my physical, emotional, spiritual and mental well-being remain great. Plus, the tremendous outpouring of love and support for Tina and I is like a vaccination against despair. I don’t claim to be self-actualized or enlightened. I still fall prey to petty annoyances.*** But all-in-all, Everything’s Gonna Be Alright.


Too Much Information

A drain tube protrudes from my lower umbilical area and empties into a collection bag that I can strap onto my leg. Tina was instructed on how to flush the drain twice a day to keep it clean and clog-free in order to collect excess blood, pus and who-knows-what. I’m not sure how much fluid is expected to collect in this bag. It could turn out to be a good Halloween costume. Actually, it brings to mind, artist Andres Serrano!


*** some hospital experience examples, for the fun of it (and to waste more time)

#1  I understand that the statement, “How are you,” is a common and friendly greeting. But if I’m having an off day, it irritates me when hospital staff casually ask. I’m not going to retort with, “Fine! How are you?” if I am not. So I respond with, “Hello.” Or I deflect by asking them the same question. Most often, I don’t respond at all which is probably perceived as rude. I don’t know why I let this bother me. But I disappoint myself when I succumb with a fake, pleasant answer? Honestly, I’m not an advocate of political correctness but I think it would be reasonable for hospital management to suggest to employees that maybe a neutral greeting would be more appropriate when addressing their customers, the patients. Something like, “Hello” is probably fine. I know the topic doesn’t deserve this much consideration. What’s wrong with me?

#2  During my overnight stay in the hospital, I was checked on by a nurse every hour throughout the night either to change IV bags, evaluate pain status, take vitals, etc. So, it wasn’t a very restful night. When the morning shift change happens, it’s like the party gets going and the noise level cranks up. Then the new nurse comes in the room and greets me with a chipper, “Good Morning!” which sounds to me like encouragement to get up. Sorry — I’m laying in bed for two more hours. Can you keep it down!?

#3  I won’t go into a rant of the deficiencies of patient profile questionnaires, but that’s another hot button topic for me.

Hospitalized

All day Monday, I was couch- and bed-bound from severe pain in my lower right abdomen — right where my appendix is (or should be). My body temperature teetered around 99-101 degrees. Luckily I had some Hydrocodone left over from my craniotomy and it helped me make it through the night. This is the same pain feeling that happened two weeks ago after the second infusion. Last time we just made assumptions about it being a urinary infection. I took antibiotics, but the blood culture did not confirm an infection, so we assumed it was a kidney stone and that I passed it. I HAVE had a stone a long time ago and the pain was really that bad. It was at least three days of agony.

So, today, in anticipation of another painful episode,  Tina took me to the doctor’s office for routine blood work. It was decided that I should get a CT scan to determine what’s going on. The CT scan was not very useful. It showed fluid — that’s it. In fact, it was not possible to even make out the appendix.

So, I was admitted to the hospital this evening. I tried to send Tina home to get some rest, but of course she refuses. It’s the couch for her tonight.

Tomorrow, I will get a CT-guided aspiration/drainage. It’s been a long, rough day, but at least I’m still here to talk about it.

Are you in pain?

Some GOALS were written on the whiteboard of my hospital room. So, what is the nurse’s number one priority?

Pain level < 10
That is, to keep my pain level less than a 10* (see chart)

Take a look at their chart. I think it could use an overhaul. The expressions of the levels are horribly inaccurate in my opinion. Think about “severe pain” (#6) and take a look at that face. This guy looks despondent at best. Worst pain imaginable (#10) looks like a tween going through his first heart break. One’s first pubescent break-up could SEEM like the worst pain imaginable, but come on. This face does not represent excruciating physical pain.

So I asked the nurse about this goal. She asked what pain level I would like to be medicated for. Really? Does anyone answer something other than NO PAIN (#0)?

My pain is now under control. Hopefully tomorrow, we will be able to figure out what’s wrong with me.

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!

 

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 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!