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.)
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.
- 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.
- Eat mostly plant based and whole foods.
- Juicing and Raw foods. We had excellent, healthy, delicious raw foods at Christopher’s Kitchen in Palm Beach Gardens.
- Budwig protocol (Budwig Yahoo group.) There have been enough support stories for me to keep this integrated into my daily plan.
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:
- Alpha-lipoic Acid
- Vitamin C
- Ortho Biotic
- Methyl B-12
- Stamets 7 (mushroom extracts)
- Fish oil
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.
- CeeNU® (chemo)
- Levetiracetam (seizure control)
- 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.
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.
MRI in mid-March, then travel to Duke for a consult.
very wise post
You really have NO IDEA what an inspiration you are!! Keep it up! We NEED you!
It makes me so happy to hear you’re feeling good! You certainly seem to have your mindset in the right place. Sending so many good vibes your way! I’m running the 2013 Race for Hope Brain Tumor 5K in DC in May in memory of my mom, so I’m still thinking of brain tumors all the time (as much as I sometimes wish I could go back to September 10th, 2012, when I’d never heard of GBMs).
Thanks for sharing, Ken. Beautiful. Love the pictures and the outlook and the Peace I can hear in your post. I know it’s not all roses for you two, but thank you for sharing the good stuff along the way.
I’m still praying to Jesus, my chosen diety (and I know yours doesn’t mind) for peace, wisdom, strength and perseverence for both you and Tina. I look forward to many more posts — and hopefully that cool picture you have in mind!
Thanks, Ken, for your sweet post and tribute to Rusty. I agree with you wholeheartedly about the blessings a committed romantic partner brings that no one else can. Though I was honored to care for Rusty throughout most of his illness and in his final days, I wished with all my heart that he had a loving partner. You are so blessed.
what a fantasy.
May blessings abound in your life and praying for your healing
Loved reading your up date and the through description of the natural healing methods you employ. I see fish oil is missing from your supplement list. I recommend adding it. Peace.
Good catch. Fish oil should have also been on the list. Been taking that for a while too. Thanks, Linzy.
Rusty was covering your back as well! God Bless
Thanks for the update and inspirational post.Looks like you guys are having a wonderful time,awesome! Sending good JuJu your way,brother.
Hey Ken. I also get your posts any time you update. My sister-in-law has a GBM and I’ve been trying very hard to learn as much as I can about it. She doesn’t have a life partner, and unfortunately, very few friends (she alienated herself years ago and I often wonder if that was the beginning of her tumor). She’s difficult to be around, insulting and mean to anyone trying to help her. (Though we continue to). She has gone nearly completely blind and doesn’t have the option of chemo. I’m not sure why. Just radiation and seizure needs and steroids. I wish she had your positive energy and love that you share with all of us.
You show me that while this disease is wretched, it’s still possible to have a great attitude and believe in higher powers and good energy and love. You amaze me with your strength and courage through this battle. Love and light to you and Tina.
Thanks for sharing, Kat. If you think there is something I can do to help get your sister-in-law in a better place, let me know. Healing has to start with her mindset I think. I wish you and your family the best. Love, Ken
Nothing I can say hasn’t already been said better by other people already, but you are a great inspiration. My spouse has been dealing with this, and reading about your indomitable spirit has kept me going. I’m appreciative of all your posts, of good times and temporarily-not-so-good times. Please, continue to share when you feel up for it.
Hi there! I could have sworn I’ve visited this blog before but after going through
many of the articles I realized it’s new to me. Anyhow,
I’m definitely pleased I found it and I’ll be bookmarking it and checking