Archive | February 2013

Fluffy Face

Steroids swelling my face.

Steroids swelling my face.

It has been about three weeks since I took my first dose of Lomustine (CeeNU). Today’s blood tests reveal that my platelets have dropped (from 139) to 48.

I will re-test in two days. If my platelet production doesn’t pick up and numbers drop too low, I will get a transfusion.

I am decreasing my steroid (Dexamethasone) dose today. I’ve been experiencing many unpleasant side effects from it. My face is swollen (which isn’t unpleasant, just an explanation of the title of this post. My doctor called me Fluffy Face.

Increased appetite is actually a good side-effect. I’ve gained some needed weight. Now I just need to get back to exercise and yoga to recover my atrophied muscles.


Retraction

In the previous post, I recommended watching the film, Forks Over Knives and declared I was cutting out meat again. I decided to look further into the validity of the claims in the film and now think that the film was biased and data distorted. Meat is not going to kill me. I’ll probably keep it to a minimum though. (Here is one source for my change of mind.) 

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Healing Everywhere

Tina and I had our first non-medical trip out of town for fun (you could call it a vacation, I suppose). We escaped to southern Florida to spend time with family, connect with the majesty and power of sea, sun, and beach. And enjoy the abundant nutrition and flavors of the sea as well as excellent, local organic fruit and vegetables of Florida. Tina’s cousin’s husband is a commercial fisherman so we ate only fresh catch all week — expertly and lovingly prepared.

So this post feels like it wants to be about my current all-around treatment plan and other critical aspects of our* fight. *Our, meaning a fight in which Tina and I are both fully involved.

Important — Loving Support

Could be any one and/or many people  but a loving caregiver/partner has proven invaluable to me and I see the power in other couples also fighting together. My friend Rusty strove to find this connection during dark days. I admired his spirit and drive so much. Craniotomy head wounds be damned — they didn’t stop Rusty from trying to talk to a pretty woman. Mothers, siblings and communities are invaluable, but a lover and a soul-mate can have vast powers of healing. (Cheers Rusty! — I know you’re still seeing me through my fight. I miss you.)

Nutrition

FOOD AS MEDICINE! I may have mentioned before being compelled by various speakers and books and documentaries to embrace some more strict nutritional practices that will be new for me: I’m going back to serious decrease of eating meat and animal products.

  1. Forks over Knives  documentary helped influence this switch. If you want to ask me what’s wrong with eating meat, watch this movie for answers. The China Study reveals interesting data about cancer and illness and meat and plant diets.
  2. Eat mostly plant based and whole foods.
  3. Juicing and Raw foods. We had excellent, healthy, delicious raw foods at Christopher’s Kitchen in Palm Beach Gardens.
  4. Budwig protocol (Budwig Yahoo group.) There have been enough support stories for me to keep this integrated into my daily plan.

Supplements

I dislike popping dozens of supplements throughout the day, but I do so under the advisement of a holistic and integrative healer. I now take daily:

  1. B-1
  2. Alpha-lipoic Acid
  3. Vitamin C
  4. Curcumin
  5. L-glutamine
  6. Ortho Biotic
  7. Methyl B-12
  8. CoQ-10
  9. Astragalus
  10. Stamets 7 (mushroom extracts)
  11. Fish oil

Chemo/Prescription

I’m not ready to quit checking the tumor status, so we will continue with MRIs. Might as well be on some chemo. I’m taking CeeNU now, with minimal effects, I think. Minor morning head pressure keeps me on a daily regimen of steroids which messes with my cheery personality and I’ve had a voracious appetite.

  1. CeeNU® (chemo)
  2. Levetiracetam (seizure control)
  3. Dexamethasone (steroids for brain swelling)

Physically, Mentally, Emotionally

I’ve been sucked of energy maybe since I started this new chemo. I’m wore out from long beach walks, but it’s just in time for Spring weather  in Atlanta and healing in the garden and getting back to yoga and strengthening my body. I’m in a good place otherwise. I just have to support Tina more. She does most of the frustrating work of keeping me on task, and coordinating schedules/appointments. She’s amazing.

Vital Energy Healing

I continue to meet with two Pranic healers who remove congested energy from my tumor zone. I feel the effects of this treatment. Tina was able to take over duties while in Florida, encapsulating and disposing of the bad energy in salt water. Maybe it’s easier or makes more sense for some people to pray to their chosen deity. For me, I try to connect with everything that is around me and in me, which is god to me.

Visualization and Intention

I visualize my tumor encased in cyan illumination with white-violet beams attacking the tumor. This may become a painting soon so it can just be there to view anytime. Meditation has waned but will also pick up in Spring. I know a good Buddhist meditation guide whom I may be able to bribe with good food.

Passions

Or at least hobbies or interests. I  know I dare not ride my 750 lb. Harley right now. My tumor is a seizure risk; My body is still a little weak, but this is a huge motivation for me. I’m going to be ready to ride when I get my next clean MRI.

Another thing that keeps me motivated is music. Just listening to music I love.

Helping and Sharing

Exchanging stories with strangers (or new friends) going through similar and often much worse struggles is saddening often, yet motivational too.

What I’m Not Doing

I know there are some other possibilities for drugs (e.g., Metformin, DCA). If my oncologist isn’t gung-ho about anyhing, then I’m going to embrace my all-natural options. Although it might seem less aggressive than called for, I believe — and I think that is a big part of the battle. I don’t believe Avastin has anyting else to offer me now. I appreciate the countless prayers offered on my behalf, but I can’t settle into hospice care and rely on Big Pharma, nurses and God to carry me to the home stretch. I wrote above that we are all God and I need to manifest my destiny.

Worry — no worrying. It only brings energy to the problem, growing it.

Thank you everyone for your encouragement and support and love. Things are going well. We can raise that 14 month median survival statistic and give others hope.

Next Steps

MRI in mid-March, then travel to Duke for a consult.


Light, love and blessings,WPB-Water-boat

Ken

Duke, “We’ve done all we can do”

We shipped the most recent MRI and data to my oncologist at Duke. She called Tina to share that it is her belief that there are not any hopeful treatment options available to me right now. That is, she doesn’t know of anything to stop it from growing. I have discontinued Vorinostat and will soon begin taking oral chemotherapy palliatively* — meaning for the purpose of extending life and alleviating symptoms. (Well, this does not resonate with me very well because I’m in a state of mind similar to when my cancer was first diagnosed — denial. I don’t feel sick. I’m not suffering from symptoms.)

What I’m suffering from is great riding weather, but knowing it’s too risky to be riding now.
*I’ll be taking Lomustine (one pill every 6 weeks) and daily Temozolomide and the next MRI will be in 6 weeks.

Surgery is not an option. Too much risk, and not much hope of success.

The previously mentioned NIH immunotherapy clinical trial probably isn’t an option either because we would have to wait several weeks for a chemo wash-out period before starting a new treatment, and they haven’t tested my tumor yet to see if I even have the gene to qualify for the study. I would also have to spend four weeks in the NIH hospital in DC far from home.

We’re not doing nothing.

We’ll make more treatment decisions and maybe some travel decisions too next week. I’ll continue with all the grass-roots efforts:

  • nutrition, supplements, meditation, pranic healing sessions, acupuncture, etc.

And painting

I’ve been working on a series of paintings/drawings of my father’s Hawk tattoo.

Hawk