Partners In Crime

This morning started with our pills. Mine included 12,000 mg of bioavailable curcumin and 6 bioperine (black pepper for absorption), Jess's included 1,500 mg of biovailable curcumin and 1 bioperine. Jess is doing the baby version of mine so that she can understand what I've been going through. She's great! And obviously crazy :) 

Next, twenty minutes after the pills we took our first big gulps...

Bone Tired

I'm sorry that I'm not posting very often. I'm grumpy and....I.am.exhausted. I can't seem to read, or email. My mind is bone tired. My body is bone tired.

Not sure why I'm so tired, but I can't seem to function very well. I'm able to work on stuff for small periods of time, then my eyes get droopy and I can't continue.

I'm not thinking very clearly and it's hard to say what's causing it. Maybe I just need more sleep, who knows. Maybe it's the artemether & natural chemotherapy working their magic, burning the straw shacks in and around Hermie village. Won't know for sure until April 19th. It's hard when I'm so exhausted. The periods when I've been the most exhausted have historically correlated with fast tumor growth. Lets hope that this is the exception.

Walking to the retirement home yesterday,  through puddles.

Favorite new sandwich:
Tuna with Dijon mustard, fresh maitake mushroom & broccoli sprouts

Chemo Drink Update

Bwoooohahahahaha....we did it!!!!! I drank the concoction, a gulp every 30 minutes. I created my drink with upland cress, daikon radish, and sulforaphane precursor pills. Because I used actual plant instead of sprouts, the drink was double the size. It was okay though, I did it! When my stomach hurt, I took big spoonfuls of organic hormone free yogurt (full fat). It soothed my stomach along with other little tricks. Having finished the last of the drink, by 2:00 pm, I could barely keep my head up, so I went to bed. Now, all rested after a several hour nap, I feel like a million dollars!! Thank you for supporting me. This is tough, but once it's over I feel wonderful. It's nice to have that behind me until next week. Now it's time to take a deep breath and pamper myself. I think I'll go downstairs and paint my toenails, they're looking a bit ratty. PS I didn't feel the Hermie burn like I have in the past, but I think that's because I fell asleep.

Miracle Melatonin

Hello friends! Yesterday I was so exhausted that after my volunteer time at the retirement home, I walked back to the house, stepped into pajamas, and fell into bed. I slept for three hours. I've recently started taking 21 milligrams of melatonin at bedtime. Not only does it help your sleep rhythms, it boosts your immune system (among other things, increasing the number of your natural killer cells) and has been shown in clinical trials to extend the survival time for a multitude of cancers (including gliomas). I'm only going to take melatonin on the days that I'm not doing high doses of artemether or sulforaphane, just to be safe, but I feel like it's a great addition to my cancer fighting cocktail (for the record, I took Monday, Tuesday, and today off of high doses, I hadn't been feeling very well so I figured I'd give my body a break). 

Melatonin cleans your body of free radicals which are necessary for my artemether, so I'm pretty sure that it's a bad idea to take it during high dose times. Other pharmaceutical chemotherapies have been shown to work synergistically with melatonin. It's actually pretty amazing. It's too bad that doctors are scared to include melatonin during chemotherapy, it would increase efficacy and extend survival time. There's several research studies proving it. If you're interested, check it out. There are a few studies in the United States, but most have been conducted in Italy. 

Anyway, since I've started taking melatonin, I'm sleeping better, but I've also been pretty exhausted. I take it as a good sign though. I hadn't been getting enough sleep, and the melatonin is forcing me to sleep more. 

On the walk to the retirement home, I saw this amazing creation. I don't even know what to call it. Someone tied a bunch of red carnations into a type of mobile. It's beautiful, and such a fun surprise. What a cool act of kindness! Someone was really in the Valentine's Day spirit. 

The first daffodils I've seen around the lake!

Twinsies!

Oh those little faces, are so cute! They're even wearing a Team Jess shirt - that's so rad!! This photo jumped into my email inbox, and instantly I started laughing. It made me feel like I could drink another cup of that disgusting natural chemo. There's something about laughter that settles the stomach :) For those who don't recognize them (they are getting so big), these cuties are Hazel and Owen, the sweet babies of Matt & AJ (you may remember them from Movember For Jess). Thank you for inspiring me to keep my chin up! Their gesture to make me smile completely spun me around into happiness and immediately filled me with energy. You made it so easy to keep going!

This morning I got the chance to meet with a new friend, Polly who consults with cancer patients and survivors. She partners with them, figuring out a plan of success. Recently, she asked me if I'd be interested in writing a guest blog. The topic is "advocacy." She said that I seemed like a great match. What a compliment! How fun! So, the other day I sat down at my computer and started free flowing on what advocacy means to me. It was thought provoking, and a great treat sharing my perspective. It should be up on her website in the coming days. Once it's posted, I'll share a link. For now, if you want to check out her website, it's incredibly informational and fun - there are some great blogs, check them out (Navigating Cancer button). Polly is a wealth of knowledge, wrapped in a warm, kind hearted shell. If you know someone in the Seattle area who has cancer, or is a survivor, her resources, education, and can-do attitude would no doubt help you jump to the next level of health. I can not say enough about how amazing she is.

On my way home (in typical fashion, I ran to meet Polly for tea, and ran back), I spotted this beautiful green plant. I recognized it from my mom's garden. Can't remember the name of it, but it made me think of my mom, my dad, and all of the wonderful memories we've shared on their patio. Sometimes life is just that simple, a little wink from nature can bring a smile to your face.

Radiation: Simply Foolish

Alright, alright....I'll admit it....I've been depressed. I've managed to continue living, putting one foot in front of the other, but deep down inside my soul I'm not my happy self. It just happens sometimes. For those who have been around me, I'm sorry. I've been cranky. For example, I said the following during the Super Bowl: "How stupid is this halftime show, Madonna isn't even singing. This is such a freaking joke." Woah, grumpy! Yikes.

Here's a few photos taken over the past week, see if there's anything you recognize:

I am pooped. This protocol is exhausting. Basically, I'm doing natural chemotherapy. It's high doses of artemether twice a day on Monday, Tuesday and Wednesday. Thursdays are the high doses of sulforaphane. On those days I can't even eat because I'm so nauseous. I curl up into a ball and want to die. At least I don't have to lose my hair :) Then, on Friday, Saturday and Sunday I drink my green upland cress drink with daikon radish then in the afternoon I take various mushroom supplements and shark liver oil. On those three days I can finally eat antioxidant rich foods (I can also cheat if I want).

This whole thing takes a lot of work, and a lot of thought. It's wonderful to have this opportunity, but man is it draining.

I can understand why people give up and just listen to their doctors. It's hard to put in the research, the shopping, the preparation, the effort, and the day-in day-out reminder of a horrible cancer that does not have a positive outlook.

Walking home from the retirement center today, I picked up a book that I had on hold at the library and I want to share an excerpt. The author was diagnosed with a glioblastoma in '95, the most aggressive and deadly brain tumor out there:

"In the meantime, conventional medicine has its limits, and cancer patients need to explore treatment options not yet incorporated into conventional medical practice. Patients must be willing to go beyond their physicians' advice, and sometimes follow options contrary to that advice. This is not an easy road to travel. Newly diagnosed patients are confronted with a disease about which they are largely ignorant. For better or for worse, they often are at the mercy of their physicians. Some physicians will actively resist any approach to treatment other than their own, even when they concede that their treatment offers little promise. Therefore, patients need to learn how to acquire medical information on their own while exploiting their physician's knowledge and expertise." - Ben Williams (Surviving "Terminal" Cancer)

This book gives exactly the affirmation that I need. It helps remind me that I'm not crazy to avoid radiation, that I'm not stupid, that maybe I'm I pioneer. Maybe? Maybe I'm a pioneer? I'm not the first to use this treatment and have success, but maybe I fall into the category of pioneer. I like the ring of it. But as I write this I think maybe I should stop fluffing my feathers.

A final quote from the book that also makes me feel better:

"Oncology also ignores the critical distinction between diseases for which effective treatments exist and those for which effective treatments are lacking. In the latter case, the practice of prescribing standard treatments that have a known record of failure is simply foolish. Yet, for many cancer patients, the standard treatments are all that are offered." 

That quote directly speaks to me. That is exactly my journey with my oncologists with regard to radiation. It seems it would be simply foolish to do it. It has a record of failure.