I was looking through my recent posts and got the impression that my life is miserable. This is far from the truth, day to day I am a happy go lucky dude. This blog is a series of snapshots into my life, and I usually take a picture when I am down - so that's only what you see. I guess writing about the down makes me feel better. That said, its been a rough week.
Last week I found out that my pen pail friend from AZ that was diagnosed with the same tumor as me when I was in treatment has passed. 18 months from diagnosis to passing. This alone is depressing, but loosing my only confidant and friend in Brain Tumor related maters has left a void in my life. Understand that I do not bring up or talk about my condition and symptoms to many people. People that don't have brain tumors usually do not understand what I am talking about and either say 'wow', and look at me like I am a psycho or laugh it off, often adding that that happens to them too. RIP KA, I will miss you.
I have been ramping up my extracurricular activities. After my camping/hiking trip, me and the family took a trip to see my sisters in Michigan. Last week a couple friends took me to see a NFL football game. These excursions are preceded with a lot of anxiety. Just working too hard during the week seems to cause me to suffer with headaches and exhaustion for days. I worry about ruining the trip for everyone if I crash and need to go home. Good news, like the camping trip, I was able to make it through MI and WI trips having a great time and suffering little health consequence. It brings me great joy knowing that I can live alive with my tumor.
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So sorry to hear of the passing of your dear friend.We have hope when a BT colleague does well and have worry when one doesn't. The only thing one can do is live life to the fullest. My husband and I went to France this summer and visited three different areas so he had to get on a plane three times but he did well. I think he rose to the challenge and you can also. He had to rest at times but he was with us and that was all that mattered. Yes, you can live alive with a BT and enjoy yourself.
ReplyDeleteDear Ed,
ReplyDeleteI am writing because I have been dealing with my son's Brain tumnors for the past five+ years.
His first tumor was a grade 3 astrocytoma which he had removed. They couldn't get it all but he was 5 years symptom free without tumor regrowth for 3 years. In the third year we discovered that he had "heavy metal toxicity" due to the many MRI's he had had and he was being treated for that condition. Unfortunately, I think it was too late as a new tumor started to grow. He has just had that one removed and we are going to Cornell tomorrow to discuss treatment options as he refuses to follow the regimen which I believe helped him to stave off the second tumor. In the third year we thought that he was going to be okay and we slacked off on the regime.
Below is a copy of that protocol.
1. a vegetarian diet including the avoidance of all forms of animal products, caffeine, refined sugars, and wheat products.
a. Diet: no dairy (dairy promotes rapid cell division, which you don't want with cancer cells); no red meat (rots in your colon); no refined sugar (diverts enzymes from the pancreas that are produced specifically to fight abnormal cells); no white flour (turns to sugar); lots of raw, dark green vegetables; fruits and nuts (fruit sugar is OK); 1-2 liters of water per day. For protein I eat lots of soy-based products, drink Odwalla protein drinks and eat sprouts.
2. juice and drink ½ oz of wheatgrass every morning. Subsequently, Brian has discovered that it works best when he takes it at night rather than in the morning with the Keppra (anti seizure medication). Freshly Juiced Wheat Grass - one shot glass full at night. If you can build up to the recommended two shot glasses per day.
a. The books are; "The wheatgrass therapy" and "Be your own doctor" which does not put down the medical community it talks about our connection to nature. She wrote many books on the subject but those are the 2 we used.
c. We purchased a wheatgrass juicer from Bestchoiceproducts.com which can be found on EBay ($54.95) and ordered a pound of wheatgrass to be delivered via FEDEX every other week ($26) www.gourmetgreens.com . We have slowly increased it to 2 oz in AM and 2 lbs of wheatgrass per week (19.00 weekly) (Fresh wheatgrass is the most potent). Dr. Ann Wigmore taught me about the wheatgrass therapy. It is a protocol which I used when I had cancer in 1988 and it really worked.
http://www.hippocratesinst.org/Hippocrates-Film-Archive.aspx
2. intravenous Vitamin C treatments weekly (building up to 200grams per week) along with a regimen of supplemental vitamins. This treatment is available at Dr. Barry Elson’s office, Northampton Wellness Center on Pleasant St. in Northampton. This treatment is based on the work of Dr. Linus Pauling. Vitamin C at high doses turns to hydrogen peroxide in the bloodstream it therefore oxygenates the blood and kills viral bacteria. I also fills the vacuole which feeds the cell and when the blood cell goes into mitosis it repairs the DNA in each new generation of cells.
VITAMIN LIST AND AMTS:
1X daily: B17 - 500mcg
2X daily: "Cellular Forte" - IP6 and Inositol (said to boost natural killer cells)
2X: CoQ10 - 200mg
2X: Selenium - 200 mcg
Maitake - 16 drops 2X daily
"Daily Maintenance" 2X daily - (consists of: Vit A 25000 IU; Vit C 750mg; D-3 100IU; E 400IU; Thiamine 15mg; Riboflavin 10mg; Niacin 60mg; B-6 10mg; Folate 400mcg; B-12 200mcg; Biotin 200mcg; Pantothenic Acid 25mg; Calcium 250mg; Iodine from Kelp 150mcg; Magnesium 250mg; Zinc 25mg; Selenium 200mcg; Copper 3mg; Manganese 5mg; Chromium 200mcg; Molybdenum 25mcg)