“I want better options.”

Now here’s were things gets a little nutty — so hang in there with me.

If my doctors knew about a therapy that repairs one’s brain while it potentially could cure me of cancer, wouldn’t you say something about it.  Nope, I guess not.  However when I called to ask if Kaiser would cover it, I was told “someone else had already tried and was rejected.”  So basically, they knew.

That therapy is Hyperbaric Medicine.  Now the San Francisco Institute for Hyperbaric Medicine has a experimental protocol for GBM (the type of primary brain tumor that I have):  eight weeks of being expose to 2.4 atmosphere(ATM) of oxygen.

I started HBO therapy last week but only 1.5 ATM due to my risk of seizures — eventually we’ll work our way up (down?) to 2.4 ATM.  I got such a strong immune response after just one treatment, I thought that if I’m getting some benefit from 1.5ATM I wondered how powerful 2.4ATM would be.  Unfortunately, I couldn’t pop my ears after my first treatment; so I put tubes it them the following Wednesday morning.  By Wednesday afternoon, I had reached my treatment level with zero discomfort!

By exposing my body to 2.4 ATM, in theory, wakes up the cancers’ innate suicide programming.  Which seemed to work, just after 1 treatment.   The body will also regrow, repair, regenerate any damage the brain has encountered after two surgeries via stimulating stem cell production.

The only problem is the cost.  It’s expensive at $250 for 90min sessions and my only option is to pay “out of pocket”.  So far I’ve purchased only 10 days on my own – I need at least 40 days of therapy at 2.4ATM, probably more ‘cuz I still at 1.5ATM.  Thus, these treatments could easily drain my bank account.  So here’s where I’m going to hit my readership up for money:

Special Note:
all your Tonglen meditations have been producing miracles in my life — please keep doing them for me and everyone dealing with cancer!  I’ll explain in more detail in a future post!

Here’s the secret to my success with HBO treatment:

• have a high blood sugar before going in
• take Ativan for claustrophobia about an hour before treatment
• after the treatment; load up on Vit C
• install tubes in ears

Seriously.

After evaluating all my options carefully, I have asked to be put on carboplatin ASAP and got my wish yesterday morning.

Earlier last week I was having dinner with a close (lesbian) friend of mine, also in YogaTree‘s Teacher Training, about how we could use our health challenges as our strengths.  I was only thinking about her — blinded to the fact of my own crazy situation.  She turned the question back on me.  I lowered my head and shook it in agreement: “of course”.  It seemed so obvious, there’s a saying: “if it were a snake, it would have bit me”.  Thankfully I’ve been doing Tonglen Meditation and facing my worse fear every day for about two weeks previous.  So that night I purchased Yoga4CancerSurvivors.com (as of this writing it is currently under construction).  So I’m planning on joining a support group for “the life-expectancy challenged” and offer yoga classes and/or meditations.

While waiting for the in line for train to the MRI, I was approached by “M” (not his real name, age 50).  He said there was something about me that he felt he could just open up to me — right in front of every one in line.  He obviously was in deep, deep pain over a relationship and needed someone safe to open up to.  Darren, YogaTree’s Teacher Training Program Director, warned us that we will have this effect on people attending our yoga classes — but this was my first time that this happened to me outside of class.  I traveled in the seat next to him until his stop in San Bruno.  I just let him talk to me and there were several instances where we both teared up.

Even though everything seems dark and desperate, and my MRIs look troubling and on the verge of hopeless, I’m not afraid of this journey…but I can’t do this alone.  If people reading this could practice doing a Tonglen meditation for me, or dedicate a yoga practice to me, or pray for me — because I believe strongly that we are all connected and that it all helps.  I’m going to need all the help I can receive in order to transform this cancer into a source of healing for anyone struggling with cancer.

Curiously, this new “tumor” is very close to my “3rd eye” (ajna chakra) in the exact center of my brain which makes me doubt this is a physical issue but a spiritual issue that I’m dealing with.  Basically when you have issues with ajna chakra, it is a sign that one is avoiding their spiritual path.  So I’ve started working with a Chi Gong Master, a type of Asian “witch doctor”, to get help me get to the source of this spiritual crisis.  I meet with him on a weekly basis.

In last week’s Yoga Teacher Training, we studied meditation.  The teacher turn me on to a book by Pema Chodron, “When Things Fall Apart“, which teaches a form of meditation practice called Tonglen.  Tonglen meditations could be defined as:

One visualizes, on the in-breath, taking into oneself the illness/suffering of others; and on the out-breath, healing for everyone in this situation.  Use what seems like poison as medicine.  Use your personal suffering as the path to compassion for all beings.

I feel like Tonglen is the exact opposite of what I use to do.  I will always regret that I never visited my aunt when she was dying of breast cancer but I had just received my fist cancer diagnosis a few years previous at 17.  I’m now 43, and it feels like I’m facing my worst fear ever!  However, I’m also feel power over this fear via my daily Tonglen meditations.

Instead of feeling sorry for me, I want to encourage that you put Tonglen to use for yourself.  For example,  on the in-breath, taking into oneself my illness and other people’s suffering with brain tumors; and on the out-breath, healing for everyone with brain tumors.  I’ll let you know if this makes a difference.

Nutritionally:

I just started taking beta-glucanase, a digestive enzyme, to help my body “digest” the protein coating cancer that actually repels immune cells.  I’ll let you know if it works.

MRI Results

10/14′s MRI was really a dramatic change after being off of Avastin for so long.  We paused Avastin treatment to wait for my scar to heal.  The change was so dramatic that it scared both me and my doctor.  So, I followed my doctors advice and took a chemo named “CCNU”.  After two weeks on CCNU, my scar unhealed which meant that I would not able to return to Avastin treatments.

11/22′s MRI was significantly worse — more “enhanced” (blood flow to tumor which makes it light up).  The CCNU failed me and now my doctor was recommending that I go on Carboplatin which was of the same class of drug.  I refused.  I couldn’t risk taking something that could again unheal my scar and further suppress my immune system.  So instead of taking Carboplatin, I fed my immune system superfoods and tried my hand at my own type of natural chemo.

1/5/11′s MRI was only subtlety worse.  My neuroncologist and I were having difficulty distinguishing between MRI “artifacts” and actual tumor growth.   However, because I never risked my health on Carboplatin, my scar never got the chance to unhealed.  In other words, I can start on Avastin next week; which was the goal all along.

Superfoods that support your immune system

• Blue-Green Algae (from Klamath Lake): 1 gram, twice per day; purchased at local heath food store; this will stimulate your bone marrow to produce stem cells
• Reishi Mushrooms: 1 capsule (about 400 mg of organic reishi), twice per day; purchased at local heath food store; reishi mushrooms have important immune boosting qualities
• Cordyceps Mushrooms: 1 capsule (about 525 mg of organic cordyceps), twice per day
• IP-6: twice per day
• Medical marijuana about an hour before bed and upon waking; find a strain high in CBD (about 8.0% or higher), this is the chemical responsible for attacking glioblastoma multiforme (GBM)

My natural “chemo”
I followed this for only 8 days.  Maybe if I tried a little longer I think I would have seen better results.

• Protocel: Follow directions on bottle.
• Graviola: Follow directions on bottle.  There is a known toxicity level that mimics atypical forms of Parkinson’s disease.  Know the warning signs for Parkinson’s!

What’s next
Here’s my plan for the next steps:

• Avastin: every 4 weeks; MRI after two cycles (8 weeks)
• Graviola: at bed time and in the mornings

Additionally:

• Feed my immune system superfoods (see above)
• Weekly acupuncture to further stimulate my immune system
• Yoga (lots and lots of yoga! see couch2triathlon.com for my further adventures with yoga)

…but what about Spontaneous Remission?
I believe we become what we think about all day long — but that is for a future post

Update 10/9/10: Finally completed my Plant-Based Nutrition certificate via eCornell.

It seems I promised a post in late August and it is now late Sept.  Here’s the progress that I’ve made:

• Daily Japa Meditation Every Other Day: an hour every other day seems to be the best fit.  I plan on joining a meditation group to “tune-up” my chi.
• Semiweekly (twice per week) Yoga or Tai-chi: couldn’t start yoga until side effects from Avastin treatments subsided.  Working my way up to once per week for now.  Very stiff!
• Weekly Acupuncture: this is working out great!
  
• Live a Life of Meaning Daily: traveling to visit friends and family while my energy is good!
  
• Continue to collect stories of cancer survivors who found natural healing through their own will power (psychoneuroimmunology): none so far.  Don’t know why?
  

…but the title of this post is “My Last Post”; and I want it to be, because I need to move on and not keep the act of avoiding cancer as the center of my life.  If you’ve been paying attention, you’ll know that I’ve had cancer at 17, 34, and now at 42.  Honestly, three times is enough for me so I’m going to start a new blog that’s more life affirming.

Let me just end this blog with what I’ve learned from having been a three time cancer survivor:

1. Tap into the power of affirmations, visualizations, meditation, yoga, acupuncture, and all things related to increasing your PNI.  Always trust in your immune system first.
2. Prevention is the best medicine and it starts at your fork.  Go vegan and avoid “fake vegan foods”!
3. Raw foods are the best sources of nutrition.  (If you go vegan, don’t forget your B12.)
4. Mercury vapors from your dental fillings are poisonous to you.  Choose a better alternative to traditional metal amalgams.
5. Having a good doctor-patient relationship is key to your long term survival.  Pick a doctor that’s going to fight for you and not treat you like you are ill or dying.  Trust me, there are many people reading this that need to “fire” their doctors.

That’s it for now — quick and dirty.  I’ll keep this last post open for comments/Q&A until the end of 2010 — after-which I’ll leave it all here, in the cloud.

Whatever I had was putting pressure on the complete left side of my brain in every direction.  I’m convinced that the only reason I wasn’t having any seizures, after looking at my MRI results, is because of all the space that the previous tumor took up.   The old tumor bed had filled up with so much fluid that it was putting pressure even on the right side of my brain.  It seems the small glowing spot in February’s MRI would turn out to be GBM (grade 4).  On 6/1, I had surgery to remove it.  Yet, after two weeks on Avastain, we’ve already seen an improvement.  My next MRI is late August, so I’ll report the results here.  However, this recent surgery and diagnosis of GBM changes my game plan a bit.

I’m need to take a different path, a more spiritual path.   Because Avastin is not really true chemo — it works with you immune system not against it — I seem to have a lot of energy.  I plan on investing every healthy moment so here’s what I’m doing:

• Daily Japa Meditation
• Semiweekly (twice per week) Yoga or Tai-chi
• Weekly Acupuncture
• Live a Life of Meaning Daily
  
• Continue to collect stories of cancer survivors who found natural healing through their own will power (psychoneuroimmunology)

I’ll expand on each topic above in later blog entries.  If I’ve forgotten something please let me know.

I found these 9 perceptions, asked as questions, in the last chapter of “Faith, Hope & Healing” by Bernie Siegel, MD.  It is based on the work of Dr. George Solomon with regards to AIDS and long term survival.   Obviously, the one thing that connects HIV with with cancer is immuno-suppression.  I found these questions of special interest because I seemed to score so poorly on them.

1.  Do I have a sense of meaning in work, daily activities, family, and relationships?

The correct answer is: “Yes”.  My honest answer would be: “No”.  I have seriously struggled to find meaning in my work and daily activities.

2. Am I able to express anger appropriately in defense of myself?

The correct answer is: “Yes” — and I have no problems with expressing my anger appropriately in defense of myself.

3. Am I able to ask friends and family for support when I’m feeling lonely or troubled?

The correct answer is: “Yes”.  However, I’m going to have to be honest here — I have only three people I can count on for direct support.  Basically, if I’m feeling lonely or troubled it is because my support network is a skeleton crew and has been like that ever since I moved from SF, more than 5 years ago.

4. Am I able to ask friends or family for favors when I need them?

The correct answer is: “Yes”.  I have no problems with asking friends or family for favors.

5. Am I able to say ‘no’ to someone who asks for a favor if I can’t or don’t feel like doing it?

The correct answer is: “Yes”.  However, to be honest, I’d have to say it depends on the situation which isn’t very healthy.

6. Do I engage in health related behaviors based of my own self-defined needs instead of someone’s else prescriptions or idea?

The correct answer is: “Yes” — and I’d say “yes”.  I’m actively involved in yoga, weight training, kettle-bell training, etc.  I’d also say my vegan cooking is a great “health related behavior”.

7. Do I have enough play in my life?

The correct answer is: “Yes”.  However, my answer would be “no”.

8. Do I find myself depressed for long periods during which time I feel hopeless about ever changing the conditions the caused me to be depressed?

The correct answer is: “No”.  Honestly, I’d have to say I was border line on this one.

9. Am I dutifully fulfilling a prescribed role in my life to the determent of my own needs?

The correct answer is: “No” – but looking back I’d have to say “yes”.

Supposedly, my responses to these questions would be considered cause for concern in the realm of psychoneuroimmuniology.  What do you think?  How would you score yourself?

(5/26 update: surgery rescheduled for 6/2)

I started to have panic attacks after not sleeping deeply due to the steroids.  My doctor prescribed sleeping pills which I resisted taking, opting instead to lower my night time dose of the steroid.  However, I’m taking the sleeping pills now — and an additional anti-anxiety pill in the afternoon just to get me though to surgery.

Until I actually go into surgery, I’m exploring how to exercise my power of psychoneuroimmuniology.  It’s simple, right?  Fear vs love.  Perceptions of fear lowers our immune response and perceptions of love enhances our immune response.  It’s our body’s perceptions, correct or not, that regulates our immune system.  However, these perceptions of love and fear are mostly part of our habitual mind (aka subconscious).  The habitual mind is just running a recording, like learning to drive.  Once you know how to drive a stick shift, you don’t have to think about it again and can focus your conscious mind on something else while you drive.  To make things even more difficult, the conscious mind and habitual mind work very well independently so as not to drive you crazy.

So then how do I tap into my habitual mind to promote deep feelings of love?  Where do I start?  Considering I spent the last year doing daily positive affirmation work, you’d  think there wouldn’t be anything left — but I have to approach this from a “beginner’s mind”.   I decided to “go within” and meditate on it.

Time dilated.  I must have need to just relax and mediate — without being on any anxiety drugs.  I was going deep.  “You’re not what you do.  You’re not what you own.”  Then a flash off light.  My mom took my picture while I meditated.  How annoying!  I went back to the guest bedroom to escape my singular paparazzi.  All I could do was laugh.  I went back to finish my meditation and remembered how a co-worker teased me about going to lunch at Fat Burger and reveling in the greasy meatiness.  Both him and I had a great laugh — but my next thought was how long it’s been since I’d laughed like that,  not for several weeks at least.  Since then, not for several weeks until today.  I think I had my answer: “Enjoy all the humor around you“.

The following Tuesday, I reviewed the MRI scans with a neurosurgeon and neuro-oncologist.   We agreed on doing an “open incision” biopsy on May 21st to see what was going on with the other side of the tumor bed — it looked massive and angry in the MRI scan dwarfing the original tiny cancer on the opposite side that we had all been focused on for the last two years.  The surgeon explained to me that the best case scenario would be a diagnosis of “radiation necrosis”.  The worse case would be for the biopsy result to be “glioblastoma” — then they would need to go in again and take out about 95% of the tumor.  The difficulty here is that what seems to be angry-looking is very close to my motor-cortex, the part of my brain that controls the my right side of my body.  The surgeon explained that I could be paralyzed on my right side, but I could opt to be awake for the surgery if I wanted to be just to make sure that my motor functions would stay in tack.  “Whatever it takes”, I thought to myself.

Towards the end of my meeting with these doctors, my neuro-oncologist asked if I had read “Anticancer: A New Way of Living”.  I told him I had (didn’t mention this blog) but that I had read an even better book: “The China Study”.  I explained how it became clear that, in a lab mice, you could turn cancer on and off by adjusting the amount of animal protein in their diet.  I noticed the neuro-oncologist shaking his head in agreement (perhaps just to humor me) but the neurosurgeon turn to me and asked: “are you macrobiotic, vegan?”  I looked at him and nodded.  His reply was a comment on how difficult the vegan diet was to keep and that he was a “localvore” himself attempting to grow his own garden.  Needless to say, I wasn’t expecting the topic of plant-based nutrition to come up but the book “Anticancer” seems to have legitimated the conversation on the relationship between food and cancer — even if the “Anticancer” book, which recommends some meat and dairy, did get it wrong.

They signed me up for a special “mapping” MRI of my motor-cortex and a simple MRI for the brain-lab.

===

Later, I met one-on-one with the neurosurgeon to review the results of the mapping MRI.  It turns out the risk of paralysis would be low.  The mapping MRI showed my motor-cortex was a safe distance away from the area they were worried about.  However, he wanted a lab tech to wire up the right side of my body during surgery so as not to harm the bundle of fibers that ran from the motor-cortex to the rest of my body.  Nicking these fibers could cause paralysis for about six weeks.  Overall, I feel like I’ve dodged a bullet.

Looking at the brain-lab MRI, I noticed that the tumor bed was mostly empty, with a combination of protein fluid and blood filling only half way.  So the swelling had gone down, but there was still an angry half-inch margin glowing in the MRI.  Along with a relatively new large area which seems to be the source of the problem.

The neurosurgeon and I had come to an agreement I that could feel good about: he would continue to go in and pull out biopsies and have someone there on-hand to type them.  If they came back, “radiation necrosis” then he’d stop.  If not, then he’d get as much as he could.  That would be the plan.

===

So there I was Friday, May 21th at 6am with my mom, step-father, and my brother being prepped for surgery.  I had to shave my beard off the night before, and get re-aquatinted with the bare face that I haven’t seen since the first incision.  The nurse couldn’t find a vein to tap so she put a warm towel on my arm and left the room.  When she returned, she told me that the doctor was not feeling well and canceled the surgery.

In disbelief, we all went out to breakfast since it was early and I could not have anything after mid-night.

Later, the realization would sink in.  We were going to have to start over: another set of MRIs for the brain lab.  Then there’s the issue of what to do between doctor’s appointments?  Since I’m already doing everything I can with regards to following a strict vegan diet, I’ve decided to focus more on the psychoneuroimmuniology aspects of cancer.  I firmly believe I can shrink, calm down, heal, reverse the angry brain cells.  Where the emphasis used to be green-smoothies, I need to figure out my deeper calling, tap into a deeper meaning, and grab a hold of a deeper passion for life.

Do you know someone who takes a pill or injects insulin daily for diabetes?

Do you know someone who has had a heart-attack or on cholesterol lowering drugs for heart disease?

Do you know someone that has all three chronic illnesses?

Is that someone you?

I’ll bet you didn’t know that obesity, diabetes and heart disease are reversible.

Without drugs.

Research has shown that following a whole-food plant-based diet will free you from your cholesterol medication, reverse your heart-disease, reverse your diabetes and safely normalize your weight.

Interested?

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