Ketosis

In a recent previous post I reported that doctors told us I may have weeks to live. So I’m reporting now that I’m still alive and kicking. I feel well. We believe the ketogenic diet is going well and helping. Headaches have diminished and I have decreased my Dexamethasone, steroid dosage by half. I have good energy. I am falling less. Walking about has gotten better.
Blood glucose and ketone levels seem to be in ranges where we would like them to be. In fact, I believe that my body is going through ketosis which hopefully will shrink my brain tumor.
We finally got a visit from a physical therapist to explain how to use some of the equipment, i.e., walker and cane, and she also gave me exercises.
Phoenix Tears

I finally got a batch of Phoenix Tears, the oil from the hemp plant. There is much evidence that cannabis has great medicinal and healing value.
I still have a bit of the chemo Lomustine in me which isn’t enough to count as a treatment. So, my current treatment is the ketogenic diet and now hemp oil. If we actually get tumor reduction, we won’t know what treatment to credit, but I guess that will be okay.
Good News, Yet Conflicted

Duke called to inform me that my MRI reveals that the tumor is stable. It appears to have not grown. This was expected to be the best outcome possible. Of course, tumor reduction would have been better news but that was never expected for this particular chemo, Lomustine, for me.
This is very good news! Despite my diligent adherence to avoiding sugar and alcohol, we decided it was an occassion to celebrate and raise a glass of wine.
The recommendation is to continue taking this chemo, which really just means taking a second dose for now. One dose lasts six weeks. Side effects have been fairly minimal and tolerable, including:
- fatigue — I’ve been zapped of energy, but this could be attributable to the steroids I take (to control brain swelling);
- low blood counts — I’ll have to continue getting frequent blood tests. I had to have a platelet transfusion during my first dose. This is not a big deal though.
So what is there to be conflicted about?
I spent the last month doing intensive research and planning for a natural healing plan (my Plan B). If the MRI revealed that I should not continue this chemo, there really isn’t another one waiting for me to try. I have pieced together an intensive treatment regimen including, diet, nutrition, juicing, supplements, meditation, yoga, kinesiology, accupuncture, ayurvedic healing, pranic healing, and a variety of other holistic treatments.
The idea behind my plan is that the human body is capable of amazing self-repair. Nurture the body, mind and spirit to optimal condition, and the body can effectively fight disease and cancer, actually destroying tumors. This sounds too good to be true. Otherwise, everyone would be healthy, right? Reading about alternative and natural healing, it’s not difficult to be convinced that many industries in our society rely on Americans to continue eating poorly, watch lots of TV, drink soda and beer, and get fat and sick. There is lots of money to be made from the unhealthy.
I was ready to forego chemo for my custom-tailored plan because I believe: toxic chemotherapy often kills patients. I believe I’ve got the right plan as well as the tenacity, determination, passion, faith and luck to be one of the ones who survive following a natural healing plan. Tina, however, knows that I finally found something that is working for me, so carry on is the only sensible course of action.
I suppose that I have to accept that the chemo is probably responsible for stopping my tumor growth. I agree it makes sense to stick with it.
I will likely pursue my plan anyway while on the chemo although my medical doctors will likely discourage me from some pieces of it namely certain supplements, concerned that they may affect the efficacy of the chemo.
A Visit to the NIH

Briefly, What’s the latest — How am I doing?
It’s been a tough couple weeks but I’m pretty much doing the same as usual. That is, I feel well-enough. We consulted with the National Institutes of Health (NIH) in Bethesda, Maryland. It was a worthwhile trip although they did not have anything very inspiring to share. We continue the good fight however.
Details
Treatment
Three days ago, Tina and I travelled to the NIH to see if they have any good ideas, hopeful treatments or interesting clinical trials to suggest for me. They did not reveal anything that just made us jump for joy. They did however criticize my current treatment plan* as suggested by Duke. We also now have a better understanding of how I am likely to experience death and recognize the need for palliative care. I didn’t expect they would have the Silver Bullet sitting there ready to save me but I was disappointed it wasn’t a more encouraging visit. At least we can say we tried. I will likely participate in a simple data gathering effort they extend. They will pay for some future travel expenses.
*NIH critique of my current treatment
If Avastin is likely to blame for my ruptured appendix, GI bleeding and tumor bleeding, then why would Duke suggest I continue? If low-dose oral chemo (Temodar) failed me in the past, why am I bothering to try again? (The answer is that we are using it in conjunction with Vorinostat as an adjuvant therapy in hopes that it will all contribute in some way.)
We did ask them about DCA, Metformin, Quarcitin, DCVax, cannabinoids and Novocure. They don’t have trials for these options now so no useful information really.
A quick note on Novocure though. I did try NovoTTF. When the tumor grew, doctors said it would be foolish to continue. I just read study results that claim continuing is exactly what we should have done. There is a 6 year survivor (from early trials) that continued treatment through progression. Who knows — I can always give it another go if I want.
Clinical
A doctor at the NIH confirmed that space is getting tight in my skull. The more the tumor grows and my brain swells, the more likely I am to become symptomatic (seizures or other neurological symptoms such as affected vision, memory, speech, mobility and so on). In fact Tina and I have noticed a little bit of speech and vision degradation.
We ordered some special blood work to reveal details that medical doctors don’t bother to take into account when treating me. These results show that:
- my body is deficient in some nutrients
- I’m not detoxing very effectively
- I should cut or reduce gluten-intake
Psychological
So I suppose it won’t be too surprising to disclose now that I have had some of the darkest days of my journey thus far. I was quite depressed for a couple days. I honestly have not experienced depression since my ordeal began 17 months ago because I have had good overall health. Other contributing factors to my down mood could be the cold, wet, dark weather or the benzo drugs I was given to counteract mood changes from the steroids I’m on for brain swelling. Western Medicine just does not have solutions for me. So I will continue to follow the paths we have previously chosen — optimal nutrition, naturopathic, holistic, spiritual growth, energy-healing, physical health, strong, and bonds with family and friends.
But as I write this post at 6 a.m., on one of the coldest nights we’ve had all winter, I see my weeping cherry tree in the garden beginning to blossom and I am happy and hopeful still. So don’t worry about me.
I think it might be time to work in a vacation soon.
An NIH Option — Obliteration and Immunotherapy
The NIH will test existing samples of my tumor. If I am in the 25% of people with a specific gene marker, then I would qualify for an immunology study they are conducting. I would have to sit through apheresis as I did for the ICT-107 trial. They extract my white blood cells, whizz them together with experimental drugs and what-not to jack up my immune system to hopefully attack the cancer. Then I would have to take up residence in hospital at the NIH where they would proceed to completely obliterate my immune system with chemo and then rebuild it with my modified T1 cells. Risks are high and include infection and sepsis. This is not an appealing option. But this type of tactic has had success with other serious diseases.
Personally
The daily outpouring of love and support from so many people brings us much joy. Thank you!
My thoughts on the meaning of life, what is real and what matters seem to be in conflict with what our society and ideals have developed into. As my condition improves I can visualize myself becoming more outspoken and active in improving areas I perceive as failures in society. I have nieces and nephews that I think should be able to expect more fulfillment out of life.
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
Dazed and Infused

Tina and I traveled to North Carolina and back yesterday for my appointment at Duke. They told us that the MRI shows that the tumor has shrunk by about 25%. This is great news.
Dazed
I say I’m dazed because I have a lot of options from which to choose. In addition to the necessary evil (i.e., toxic chemo) I plan to pursue holistic strategies more diligently going forward. I just have to be careful about complementary and alternative medicines because they can be so good for the body on a cellular level that they could impede the chemo and help the cancer thrive. I just don’t want my treatment to be all poison. Unfortunately, no one can tell me with certainty what strategy is best. There are plenty of varying opinions out there. I have to go with my gut. (Since my appendix ruptured, maybe I should say, “go with my heart.”)
Infused
I am continuing with the Avastin and Irinotecan infusions. Since they seem to have done some good, it’s not unreasonable to assume (or hope) that they will continue to help.
Phenomenon
Last weekend Tina and I had a yard sale and before getting rid of some old movies, we watched Phenomenon (1996, with John Travolta, Kyra Sedgwick, Forrest Whitaker, Robert Duvall). I do not have telekinesis or savant brilliance, but the movie definitely struck a chord. Might be worth a watch if you haven’t seen it.
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.
Second Infusion

I’m writing this update from the doctor’s office, while undergoing my second infusion of chemo.
About nine days into my first round of chemo, two weeks ago, I began having some lower abdominal pain. Pain and discomfort steadily increased over the next several days. I barely got any sleep the past three nights because of the pain and getting up frequently to use the toilet (or at least TRY to). I thought it may have been an expected side effect — constipation. But this morning at my doctor’s appointment, a urine sample revealed I have a urinary infection. That should be easily cleared up with antibiotics.
So all in all, so far, so good. Unfortunately I won’t get an MRI until six weeks from now, which is to say, we have to wait to know whether the chemo is effective or not.