Tuesday, February 28, 2012

It's What Friends Do

It's not exactly the drinks we used to share, but......hey......friends don't let friends drink alone. :)

Monday, February 27, 2012

Misery Loves Company

Beautiful blooming tree in front of the Green Lake library

It's gorgeous in Green Lake today. It's sunny and the air is crisp. I just jogged the lake with Emma, stopping by the library to pick up a book that I had on hold.

Things have been great, just chugging right along with the protocol. I've made some changes and decided to allow antioxidants to my Monday-Wednesday routine. Those are the high dose days of artemether, and I'm supposed to limit my antioxidant intake because antioxidants clean up free radicals in your body. The free radicals are what are needed for the artemether to arrive into the cancer cells. Anyway, it's a long story and I don't completely understand it, but what I do understand is that my body needs an apple or a hot tea here or there - and some raw garlic.

I'm hoping that allowing my body to have antioxidants on the high dose artemether days won't hurt the progress. Guess we'll just have to find out in April at the MRI. I just can't live off of bland, boring, nutrient sparse foods. I crave tea more than I crave wine. Is that crazy or what?!? It's true though. Never thought I'd say it.

Other changes in my life include the removal of my copper IUD. I had no idea that copper causes angiogenisis (the development of new blood vessels), which is "a fundamental step in the transition of tumors from a dormant state to a malignant one," according to Wikipedia. Ooops. Thank you to my brain tumor friend Jessica for pointing that one out. Jeez. Seriously, I am so glad that I post so much personal information on this blog because ya'll keep helping me get healthier and healthier.

There are so many things out there to know, and things that can combat (or encourage) cancer. It's impossible to have all of the information, and that's why I love you all so much. I appreciate all of the help!

In about an hour my girlfriend Jess, who is currently living in Abu Dhabi with her husband Andre (awesome guy), will be arriving for a week. For those who don't know her, she's the friend who flew across the world to be with me when I was diagnosed and shaved her head in solidarity. I'm so excited to see her!! I also can't wait for Thursday when I take my chemo drink. She's one of those girls that will totally try it - I can't wait to see her gag and then laugh hysterically. Friends like her are priceless. I don't know why, exactly, I'm so excited to disgust her with my chemo drink. It's probably because misery loves company? Or, maybe it's that I'm a sucker for a good laugh. Regardless, I'm excited.

Friday, February 24, 2012

Just A Chapter

Two days ago I couldn't stay awake for more than 4 hours at a time. If you think about it, it's kind of hilarious. I'm like a child sometimes. Yesterday I did high doses of curcumin, piperine and then followed it up with a sulforaphane drink. There's a picture below of the concoction in process. I wasn't able to finish it all, but I didn't throw up so that's progress! I took a big gulp again this morning, and almost lost it. I've saved the final gulp to finish later today or tomorrow morning. My stomach is in complete knots. The only thing I can handle right now is hot tea. I'm okay with that though. The whole point is to keep the drink down, so who cares if it makes me sick, as long as I don't barf. 

A few minutes ago, through the pouring rain, I jogged the lake. I needed a challenge. I've been so damn tired, and for a second, I started to feel a little better. Seizing the moment, I tossed on some running shoes and a hat, snagged Emma's leash, and took off around Green Lake. Oddly, my stomach loosened up as I ran. The rain was refreshing, and reminded me of how fortunate I am to be able to run again. I thought about the long journey after the brain surgeries. This brain tumor is just going to be a chapter in my life, not the whole story. 

Wednesday, February 22, 2012

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

Sunday, February 19, 2012

Meal Planning

Success. There's a billion birds at my feeder!!! Whoo hoo!! They are so cute, and so little. It's fantastic! Bingie was drooling and talking up a storm, we were both very excited.

Thanks for the encouraging words on the last post. I appreciate the support. Dan and I realize that this is very difficult. We're trying to navigate this journey with tenacity, but sometimes it's important to allow mistakes. The whole thing is tough though. I'm not really in a position to eat a normal diet. If I want to live, I need to eat better than anyone else. I need to fuel my body with cancer fighting foods and supplements, along with avoiding cancer feeding foods. It's impossible to be good all of the time, and it's hard not to hate yourself for your mistakes. The mistakes taste so good, too. That makes it even harder.

Dan and I are trying a new technique this week. We'll see how it goes. It's a combination of suggestions from friends. We're doing meal plans Monday-Wednesday. Thursday will be a bit more difficult because of the sulforaphane drink (which I'm thinking about doing on Fridays as well). On sulforaphane days I tend to not be that hungry. Saturdays are normal days when we can eat a more relaxed diet. Sundays are back to high antioxidant foods. So, it will look something like this:

Monday/Tuesday/Wednesday (limited antioxidants): 

Oatmeal or toast with almond butter

Tuna (with or without bread) or almond butter sandwich

Salmon or other fish or shellfish
broccoli or asparagus or brussels sprouts
quinoa or brown rice

Thursday/Friday: Whatever fruits or vegetables I want....YUM!!! Salads, slaws, whole grains, nuts, seeds, seafood...curcumin, raw garlic, onions, cayanne pepper, broccoli tea, green tea, oh the pleasures of the simple things. On Monday-Wednesday I find myself craving tea and blueberries. It's so funny that blueberries, apples and green tea fill my thoughts constantly when I can't have them.

Saturday: Same as Thursday/Friday but I can add diary, or wine, or whatever else to my meals

Saturday: Same as Thursday/Friday

I'm going to try this schedule out and see if it helps me mentally prepare for each phase. I might get more in depth with my planning, we'll see. I've never been that good with meal planning.

Friday, February 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.


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.

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. 

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 :) 

Wednesday, February 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.

About Jessica Oldwyn

On April 13th, 2010 at age 29, Jessica was diagnosed with a tennis ball sized brain tumor. The classification is an infiltrating/diffuse astrocytoma (a type of glioma) tumor. Within several days she underwent a partially awake craniotomy, with a second emergency brain surgery to follow. This is her life, living with a brain tumor. Visit her website atjessicaoldwyn.blogspot.com

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!

Monday, February 13, 2012


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.

Friday, February 10, 2012

Fill It With Happiness

What a difference a day can make! Ever since I lost my cookies (I wish it was cookies, but more like curcumin, sulforaphane, piperine and such), I've been feeling better and better. My brother and his daughter Isla came by this morning, and we had the chance to have lunch with our buddy Burke.

Life is so complicated, and then in the very next moment, so beautiful and simple. Kaal, Isla and I walked down to Green Lake and tried to feed the ducks, seagulls, and any other feathery friend we could find, but alas it was raining and we ended up tossing peanuts into the air for no good reason other than our own laughter. Actually, that's a pretty damn good reason :) It was fun!

I'm so lucky. My only goal in life is to survive, and on that trail that I'm trying to blaze, I just want to be able to show my love to those around me. Hugs, kisses, laughter, and love - it's the whole point of living. My life would be so different if I wasn't battling cancer. This journey continuously reminds me of the true meaning of life. I don't want to take anything for granted. It's nice to just live in the moment. Life passes by so quickly, and there's joy in every moment. If you can't see it around you, just take a deep breath, close your eyes and think of something that makes you smile. Life is just that simple. You can make it anything you want, fill it with happiness.

Thursday, February 9, 2012

Rogue Monster

DAMN IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I vomited. I wasn't feeling well, and like a rogue monster that frothy mixture projectiled from my mouth. As you can see from the amount, it was everything in my stomach. There was nothing I could do, and I'm so disappointed! DAMN IT. UUUUGGGHHH. Hermie's little home is still tingling, so maybe some of the components got where they needed to be, but I wish I could have digested it all. Aaah, fun. Chemo is the best. At least my stomach doesn't hurt so badly anymore. Still in knots, but the nausea is gone. This is why they put chemo directly into your veins, that way you can't throw it up. Oh well, I don't have that luxury. For now I'll just take it easy until next week. Gotta figure out what went wrong. Maybe I drank the mixture too quickly. Boy is my breath nasty. It's toothbrush time.

Drink Effects: Video

My friend Meghan just saved me. I forgot to get Gatorade or any type of chaser for my drink. Thank God for Meghan. She is amazing. She ran to the store, then came to me. I'm about to vomit, which is very detrimental to this treatment, so this will be short and sweet...here's a little video I made after a suggestion from my Mahar (Meghan).

Baptized by Nature

Where has the day gone?! Oh well.

I am so happy! I just had enough energy to run around the lake and swing by PCC to get essentials to finish today's treatment. Good lord that felt amazing. It's misting outside, and as I ran, the rain on my face felt like I was being baptized by nature. It was beautiful. For a moment, it cleansed me of my fears, and absolved me. It was glorious.

Now it's time to do what I've been putting off.....the curcumin & piperine, followed by the sulforphane drink. Here's the first step....yummy....

Cocktail of Treatments

I am happily full. A change from the past few days. It's hard to avoid eating until 11:00 am and stop eating at 4:30 pm. But, I'm okay, I survived again, and happily, I just crammed an apple and a handful of mixed nuts into my mouth. I'm sipping on my broccoli tea, listening to Pearl Jam (it was on the radio). It is so nice to eat an apple, they're so crispy and delicious! YUM. Ambrosias are my favorite, but I also love a good pink lady or honeycrisp.

I have a few minutes before I need to jog around the lake, the long way, and swing by PCC to pick up my  whole milk and a healthy style Gatorade (the real stuff is full of synthetic sugar and food dyes). Today I take my 20 curcumin pills & 5 piperine, then twenty minutes later I blend special sprouts along with 30 pills of xymogen (broken open into the blender) and a little bit of water. I take that drink with whole milk or heavy cream, then I chase it with an electrolyte drink that helps smooth the tummy.

Last week when I was taking the drink, my parents came by and I had them try it (along with Danny). It was hilarious! It's the most horrid drink I've ever encountered. About an hour from ingesting it causes a crazy laxative effect (GROSS), and my dad and I were passing each other back and forth up the stairs to the bathroom. It's completely gross, but it's effective and that's all that matters. This is the special drink that our friends used to eradicate their brain tumor.

It is imperative that brain cancer fighters get together and share knowledge. We can save lives. People are surviving. There aren't very many because most follow their doctor's advice with standard of care even when it's proven to have little to no effect on survival. There are various treatments that have much more success than standard of care, and the information is out there on tumor blogs. Never give up. Don't be afraid to make your own path. You have to fight for yourself, fight for your life. If you come into opposition, which is very likely, stand your ground. I believe that my radiation oncologist, if he was diagnosed with the same cancer, would start researching everything he could to optimize his chance of survival. He is outspoken, extremely intelligent, and believes he is an expert in his field (which is true). Something tells me that he dives into things head on, and he would quickly become an expert on how to save his own life. But guess what, he doesn't have brain cancer and therefore does not have the energy or time or desire to devote his time. On a related note, here's another quote from my current book:

"The current medical system does not provide the best possible treatment for cancer patients, and especially not for those with brain tumors. In my own case, I would likely be dead if I had followed the advice of my neuro-oncologist. My prognosis was dismal. Rather than simply accept this small chance of success, a patient is better advised to look beyond the standard protocol for additional treatments. Different treatments have different mechanisms of action and the laws of probability imply that the more treatments a patient uses, the greater the chances that at least one of them will succeed." - Ben Williams (Surviving "Terminal" Cancer)

I am just shocked by our cancer care in the United States. Everything is dictated by our government, specifically the FDA who favor pharmaceutical companies and their multi-million dollar trials. It's important for cancer patients to remember that just because there hasn't been a trial proving efficacy, that doesn't mean a treatment is ineffective. Cancer patients are taking their lives into their own hands, choosing to save themselves. If all of us cancer fighters band together and share knowledge, which they are doing, we can save ourselves. Screw these doctors that aren't trying to save our lives. We will just do it ourselves. I will not give up, no matter how many headaches, stomach aches, pain, frustration, exhaustion, or sacrifice. I will not give up, even though sometimes I want to climb under the covers, crying, with a 10 lb bag of peanut M&M's and a pint of Karmel Sutra from Ben & Jerry's.

Life makes me want to cry when I think of everyone dying because they can't stand up to their doctors. I am not saying that the doctors are bad people, they're just ignorant. They don't have the time to research the various options out there for cancer patients, and trust me there are many, many options. I'm continuously reminded that it's important to do a cocktail of treatments that work synergistically. It's just like health. If you just cut calories, you'll lose weight but you will lose muscle mass and you won't alleviate the initial problem of why you gained the weight in the first place. It is widely known that you need to change your diet, your life style, your exercise routine, and your mental state to successfully keep the weight off. There's no easy answer in life, success comes from a whole body approach and I believe that's true with everything.

Here's a photo from yesterday. Although my suet has not attracted any birds, my sweetheart neighbor Beth Ann moved her bird feeder out so that we can both enjoy the feathery cuties. Maybe it's time for me to take Elliot's advice and put something I like underneath my feeder. If only there was a way to hang it above our car, that would be perfect :) I bet I would quickly have a Hitchcock moment.

On another note, today is the anniversary of our vow sharing beneath the Eiffel Tower. (Our actual marriage became legal in July, when our friend Clay signed our certificate as a justice of the peace.) What a miracle of a man. Dan is a main reason why I work so hard, fight with such effort, and yearn to live. He treats me with such kindness, showering me with compliments each day, telling me how much he loves me constantly, loves me when I'm bald and bloody, and is always attracted to me despite obvious ailments (like staples on my head or stitches on my breast). He is my perfect man, and I am so grateful that I get to spend my life with him! I don't know how I am so lucky, but I will not take it for granted. He is my version of perfect. I'm so glad that I didn't settle for anything less than Danny. Now, I just need to find a way to enjoy his company for years and years and years. Danny literally knocks my socks of in every way. What a gift!

Tuesday, February 7, 2012

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.

Wednesday, February 1, 2012

5th Percentile? Ouch.

Yesterday was so much fun! I got the chance to paint the nails of a 100 year old woman, Margaret. She grew up in Cashmere, then in Anacortes, and finished high school in North Bend. Margaret is such a sweetheart. I just adore her. I'll be painting her nails each week. I'll walk up and put the basket of goodies on the table, then I'll go to her apartment and get her. She manages all by herself (except for her rolling walker). Margaret prefers her nails to be tapered, which she mentioned seems to be out of style at the moment, but she considers herself to be old fashioned. She let me know that she always picks the same nail polish called, Mud Slide. It's a shade of light pink/mauve. She likes her nails to have a french tip which makes it a little tricky. I painted her nails, leaving the white area at the tip. I was concerned that her nails weren't looking as good as they should, but as Margaret laughingly confessed, "It doesn't really matter since I can't see that well anyway, dear." How cute is that!

After nails I head over to the memory center. This is a secure area. The residents have memory issues, and if they were to get out of their residential area, they wouldn't know how to get back home. You wouldn't know it working with them though. They are the happiest, most jovial group. I join in the circle group of sitter-cise. It's exercises from a sitting position. We throw balls back and fourth, and play with a parachute. It's a lot of fun. They loved my purple ruffled ballet flats, and gave me a round of applause when I finally on the third go-around, remembered all of their names. Wow. A round of applause!?! I haven't had that happen in I don't even know how long. What an ego boost!

I had to warn Danny that there's a gentleman, Marv, in the memory care that's going to give Danny a run for his money. He's absolutely adorable, and even though he remembered my name, I kept forgetting his. He just smiled and said, "It's okay honey, it's a hard name." But the thing is, it's not a hard name! I've been visualizing all of their faces and one by one memorizing their names. I'm determined to call them by their first names next week. It'll be interesting to see if they remember me. This is such great practice! Seriously.

The other day my mom asked me to get the full file from UW so that we can read everything they've documented about my case. I just finished reviewing a report from my speech therapist, and I'm not going to lie, it hurt to read. I think I'm done looking into my file for a bit. According to my speech therapist's notes, "Reading - Assessed reading speed on Nelson-Denny Reading test for both reading aloud and to herself, her scale score was 175 and reading aloud 171 (both at the 5th percentile for her education level)." Ouch!

Before my brain surgeries, I was a smart girl. I was an A/B student. Especially in English courses in high school and college, I was at the top tier of the class. How ironic that I now have difficulties in the exact areas where I used to excel. The 5th percentile? The speech therapist never said that to me, which is probably good. That would have broken my heart. Now, it's just sad. I'm improving little by little, which is great and I'm so grateful, but my deficits still shock me. I'll bet it shocks those around me as well. I can type pretty well on the blog. I'm good at articulating how I feel, or what's going on around me. At least I have that. I can and do read, but the comprehension is pretty poor. I still enjoy reading though. I don't think you have to retain stuff to enjoy it in the moment :)

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