Feb 17, 2012
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.
Sabotage
It's ironic that I pride myself on encouraging others to take care of themselves, and yet here I am a hypocrite avoiding my own life saving tricks. Sometimes I shoot myself in the foot. As I said in an earlier post, I took this week off of the high doses of artemether because I wasn't feeling very well. I wanted to give my liver a break. I had every intention of taking my high dose sulforaphane drink yesterday (the natural chemo), but as the day wore on, I kept avoiding it, deciding that I would take it just before bedtime and try to sleep off the nausea. Of course, just as it always happens, when I procrastinate, I end up falling through. And as the evening disappeared, my stomach increasingly clinched, fearful of the nausea and ill effects. In my infinite wisdom, I poured myself a glass of wine (yah, genius, because THAT'S good for my liver). Then another. Foolish girl. It was pure sabotage.
So here I am the next morning with the same clinched stomach fearful of the nausea and ill effects. Why am I delaying the inevitable?!? I'm drinking a cup of black tea (infused with sulforaphane), trying to work up the courage to try again with the natural chemo. We know that this system works because our friend shrank her brain tumor with this, so why am I still staring at the glass?
Last week when Meghan stopped by with electrolyte drinks we discussed the smell from the concoction. I think it smells like a baby's diarrhea - the kind of baby that's eating whole foods (mothers know what I'm talking about). Megs thinks it smells like burnt hair. Either way, it's horrible. I find myself about to barf, even though I haven't even drank any yet. UGH. I'm so frustrated.
As you can see, I'm not being as rigid with my diet these days. I'm acting as a guinea pig, waiting to see if this MRI will show a regression of the tumor even on a more Western style diet. I just don't have the strength or will to eat as good as I did last time. I'm scared that I'm feeding Hermie, but at the same time, I can't seem to stop myself and be a good girl.
I eat well most of the time, but I know from experience that eating well most of the time is not enough. Hermie grew a bunch from July of 2011 to October 2011. It was shocking - that's when they initially asked me to start doing radiation. Sometimes, because I feel so well, and I look healthy, I forget how serious this cancer is. If I would have accepted the standard care of radiation, I would still be dealing with necrosis. My healthy brain cells would still be dying - it takes around 6 months for the death of cells to taper off. I would be bald. I would be trying to recover from frying my brain. I look healthy because I have opted out of Western medicine's procedure. I have to try and remind myself that my cancer is very serious. It's easy to forget sometimes. I want to pretend that I'm normal, that Dan and I can laugh and talk about having children someday. Sometimes I don't want to deal with reality. It seems like this is one of those times. I need to get back up on my feet and back with the program. I'm hurting myself, and those around me whom I love. This sucks.
So here I am the next morning with the same clinched stomach fearful of the nausea and ill effects. Why am I delaying the inevitable?!? I'm drinking a cup of black tea (infused with sulforaphane), trying to work up the courage to try again with the natural chemo. We know that this system works because our friend shrank her brain tumor with this, so why am I still staring at the glass?
Last week when Meghan stopped by with electrolyte drinks we discussed the smell from the concoction. I think it smells like a baby's diarrhea - the kind of baby that's eating whole foods (mothers know what I'm talking about). Megs thinks it smells like burnt hair. Either way, it's horrible. I find myself about to barf, even though I haven't even drank any yet. UGH. I'm so frustrated.
As you can see, I'm not being as rigid with my diet these days. I'm acting as a guinea pig, waiting to see if this MRI will show a regression of the tumor even on a more Western style diet. I just don't have the strength or will to eat as good as I did last time. I'm scared that I'm feeding Hermie, but at the same time, I can't seem to stop myself and be a good girl.
I eat well most of the time, but I know from experience that eating well most of the time is not enough. Hermie grew a bunch from July of 2011 to October 2011. It was shocking - that's when they initially asked me to start doing radiation. Sometimes, because I feel so well, and I look healthy, I forget how serious this cancer is. If I would have accepted the standard care of radiation, I would still be dealing with necrosis. My healthy brain cells would still be dying - it takes around 6 months for the death of cells to taper off. I would be bald. I would be trying to recover from frying my brain. I look healthy because I have opted out of Western medicine's procedure. I have to try and remind myself that my cancer is very serious. It's easy to forget sometimes. I want to pretend that I'm normal, that Dan and I can laugh and talk about having children someday. Sometimes I don't want to deal with reality. It seems like this is one of those times. I need to get back up on my feet and back with the program. I'm hurting myself, and those around me whom I love. This sucks.
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| Roasted Portabella Mushroom, Red Quinoa & Upland Cress Salad |
Upland Cress Salad
1 bushel flat leaf parsley (chopped fine)
1 English cucumber (chopped)
1 red bell pepper (chopped fine)
1 bushel upland cress (chopped)
3 green onions (chopped fine)
1 large lemon (juiced)
cracked pepper to taste
I need to be eating a bushel of upland cress every day (when I'm not on the artemether). At least a bushel. And the thing is, I know it. I know what I need to do. Why am I sabotaging myself with wine and other things? I'm embarrassed and disappointed in myself.
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| These guys are fishing at Green Lake almost every single day. Aren't they cute? They remind me of my brother. He'd be fishing every single day if his wife would let him :) |
Feb 15, 2012
Guest Blog
Here is my guest blog, posted on www.suvivorshippartners.com
What does it mean to advocate for yourself?
It means survival. Unfortunately, in today’s medical maze, there aren’t many successful treatments for my type of cancer. I’m fighting a malignant brain tumor, and the replication of those nasty cells progress faster than current healing science.
According to the traditional system, my treatment plan is supposed to go something like this: brain surgery, radiation, chemotherapy, another brain surgery, maybe another type of chemo, and then an agonizing death while my body and mind degenerate. Sound like fun? No. Nope, the outlook is horrible. Is that acceptable? No!
If your doctor doesn’t have the means to help you survive, it is your duty to look toward other options. You have to fight to survive, which is heartbreaking because those with these death sentences are exhausted and beat down already.
At first, I believed my doctor’s words and thought that there was nothing I could do. My very prestigious neurosurgeon and accomplished radiation oncologists both said that I could eat whatever I want. They said I should live my life however it makes me happy. It sounded nice. I was set to sustain on red licorice, peanut M&M’s, sourdough bread and glorious full bodied red wines. Yum! But, something didn’t sit right. It just didn’t make sense that my food choices didn’t matter. I mean, wait a minute, I had heard that you are what you eat? If food is fueling my body then it doesn’t make sense to load up on junk.
I realized that there was so much that I didn’t know, and I decided to figure out more about what causes cancer and what feeds it. Then, here and there, I kept hearing stories of survivors of brain cancer. There are only few, but I realized that those few have valuable keys to survival. That became my new goal, copying survivors.
There is so much that you can do, including supplements, diet, exercise, meditation, clinical trials, etc. When I came out of my brain surgeries (there were two consecutive) my doctors told my family and me that I have a 1% chance of surviving this cancer. Scary! At least it sounded scary, but once I started researching alternative treatments I realized that I can increase my survival by several or tens of percentages.
You can not be afraid to do hard work. You can not give up (except for once in awhile when you really need some ice cream). Each cancer is different. Become an expert on your diagnosis, on the treatments, on the survivors, on the diet, on the mechanisms of cancer cell division, of how the cancer feeds itself, and what the cancer cells are comprised of. I know it’s a lot and it takes an incredible amount of energy, but that’s what friends and family are for. Don’t be afraid to delegate. People want to help you, they want to see you survive. Everyone loves the underdog! Yes, you are going to be exhausted, and sometimes you won’t want to go on, but you have to. You need to. You must. You can do it!
You must be your own advocate. If a treatment doesn’t feel right, or if the risks outweigh the benefits, you don’t have to do it. For example, my radiation oncologist has been trying to force me into doing radiation, even though he admits that it will not extend my life and that there are very serious short and long term effects. You are a customer in the medical system. Your surgeon, your oncologist, your radiation oncologist, each nurse, they all work for you. I’m not recommending that you give off an attitude because that’s just unnecessary and rude. But keep that in mind while you are in appointments. You deserve to be treated with kindness and respect. This is your body, your life, and your survival.
If you want to survive, and I believe that we all have the ability to do so, advocate for yourself. It’s the biggest challenge you will ever face. Contrary to common belief, you’re not fighting the medical world, you’re fighting yourself. Once you stop fighting against your sadness, or disappointment of your illness, you can dust yourself off and decide that you are your own best treatment.
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