SFHBO = HOPE

3 06 2011

So now that I have been given 3 to 6 months to live by my neuro-oncologist — probably more like 3 months judging the tumor load in my head — I literally asked him quite directly: “I want better options.”  My best option that he could provide was access to a drug called carboplatin so that’s what I chose.  Now, I’m suffering the side-effects of that choice: fatigue, nose bleeds, lowered immune response, etc.  Basically, I’ve poisoned myself in the hope that it will make a difference in my battle against cancer.

“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:

Donate

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




3 to 6 months to live?

18 05 2011

So I got the bad news yesterday: after confronting my neuro-oncologist, he told me I had about 3 to 6 months to live.

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.





Adventures in Healing: Tonglen Meditation

10 05 2011

I’ve got bad news to share.  The doctor’s found a new 8mm “tumor” growing in my corpus callosum – basically, it’s inoperable.  It has already caused me to have three consecutive seizures  on 4/14.

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.





Last 3 MRI Results

7 01 2011

So my last three MRIs (10/14, 11/22, 1/5) showed the tumor growing.  What is interesting to note is that the tumor growth seems to be slowing down.  However in the mean time, I look great, I feel great, and I have seemingly boundless energy!  So the questions is: how long will it take for my MRIs to catch up with the excellent way I’m feeling?

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😉





My Last Post

25 09 2010

Updated 10/25/10: added comment on meridian tapping, a form of psychoneuroimmunology

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.






A Spiritual Solution to Cancer?

4 08 2010

I’m sorry to report, my health has taken a very quick turn for the worse, and I had to have another crainiotomy exactly 8 years from the first one.

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.





9 Perceptions That Will Keep Your Immune System Strong

28 05 2010

Warning: This blog entry has been rated TMI — as in “too much personals information”. You’ve been warned.

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?








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