Winking at Fear

Yesterday, I turned a year older. And, it has officially been 4 years, 3 months, and 25 days since I was diagnosed. I have had three brain surgeries. I have tried almost every brain tumor diet on the planet. I have gobbled hundreds of thousands of pills. I have researched. I have exercised. I have meditated. I've dodged seizures; I have endured them. They've injected shot after shot to boost my immune system, and to fight my tumor. I've done the high dose IV drips. I drop venom in my nose, and I swish it in my mouth. I've traveled the country, and around the world, to meet with doctors for second opinions, for surgeries, and treatments. All that, and so much more, and yet I feel like an imposter, like this isn't my life.

I got the email yesterday, a great birthday surprise, that I am included with five other bloggers to be posted on the National Brain Tumor Society website. As I read the other posts I felt like a voyeur, like I didn't belong. It's confusing because I relate to so many of the things that they wrote, yet, with others I have no experience: radiation, chemo. It's as if they were long lost family members; we had never met, but somehow I recognized myself in their faces. I loved the variation of stories, of perspectives, of journeys. The voices, although different, carried similar threads of hope, fear, frustration, gratitude, and determination. Everyone had gone through a lot, whether it had been surgery, or treatments, or a combination. But some of these fighters truly astound me with what they are conquering, what they're capable of enduring. I read the blogs yesterday but I keep coming back to reread them, trying to soak it all in. When I was first diagnosed I tried support groups and they were horribly depressing. In contrast, I'm finding that those who chose to blog about their experience aren't just wanting to connect, they want to help. They want to reach others, far and wide, in the hope that their experience will save another some trouble; to help connect the dots faster.

I am now 34 and it feels old. It feels solid, grounded in my situation, in my brain tumor reality. Kind of stuck. And in my life of contradictions, I feel removed, and floating. I was emailing, the other day, with my cancer buddy Lo, and we were recognizing how you get diagnosed, then everything stops. You keep swirling through scans, and treatments, and scans, and treatments, and year after year you get older but your world stays the same. You try not to, but from time to time, you can vividly imagine where your life would have gone, the road that was washed out before you. 

This year, to distract myself from my inevitable hamster wheel of treatments, at the recommendation of my buddy who did the same for her 34th year, I have decided to do as many things as possible (within reason) that make me uncomfortable, that scare me, that push my limits. I envision lots of nervous laughter, and triumphs. Probably a good deal of sweat, and awkwardness. Living with cancer/brain tumors makes it impossible not to live in some state of fear. More so than most. I challenge myself to open my arms this year to fear, to look it in the face, cock my head, and give him a wink, then jump.

So cheers to another year! This time, instead of cancer pushing my limits, always cancer driving my fear, or cancer making my life uncomfortable, I will take control and steal away some of cancer's power. I'm ready for a different type of fear, and a better adrenalin rush.

Here's a few photos from my birthday celebration, checking out Crystal Mountain, with Dan (including my attempt at a photo bomb). The year is already off to an exciting start... 

Love, True Love

My girlfriend Meghan just emailed this photo to both Danny and I. How fun! I had never seen it before. I can't believe how short my hair was, and how far I've come. I'm so fortunate to have such a wonderful man who loves me so deeply. I'm incredibly grateful to have such wonderful friends, and an amazing family. I am not defeated.

Last Thursday was a turning point for me. I had breakfast with Jude, and Seanene, and after I jogged home, I called So Cal Patti. I had been living on a 25% belief that I could beat my cancer, but then, throughout the day, something shifted. When he came home from work, I told Danny I was at a solid 75% which is great news because I had been tearful at the drop of a hat before Thursday. And, I'm incredibly happy to report that after this past weekend, I realized I'm back at 100% again - just like the old days. I can't explain it, it's just a gut feeling. That's not to say that I'm not fearful for my journey, but I'm more excited about the future success of my treatments.

Somehow I realized, truly absorbed the notion, that I am incredibly healthy. That no one would ever expect me to be ill. That I'm shockingly healthy, and capable, and fortunate. I have been surrounded by a loving and selfless man who continuously makes me laugh uncontrollably, and I have mounds of friends who endlessly hug me, and give me their love, constantly filling up my soul. I have family who will stop at nothing to help me beat this. I have new friends who have found me from this blog, and continue to support and love me even though they have their own challenges in their lives. I am alive, I am thriving, I am quite possibly the luckiest girl in the world.

I want to say that "cancer" is just a word, but that would downplay the reality. Cancer is serious, it's scary, terrifying actually, but life is full of beautiful relationships, of love, laughter, and kindness. Somehow, I no longer really feel like I have "cancer". I feel like I am a whole person, completely healthy, incredibly capable, and that my choice to do this chemo drink, to take all of my supplements, to exercise, to partake in the IV treatments, and to practice my deep breathing, are all to keep me healthy. I feel like I'm more in the maintenance phase than a deeply stressful fight to save my life. It's an amazing evolution, one that was necessary for my survival. People can not function in survival mode for long, not without enduring serious consequences.

Armouring UP

This photo makes me laugh. I was trying to hand over my phone to Danny so that he could take a photo of Mount Rainier. It sums up my life at this point, completely sideways.

I have been exhausted, spinning around in circles, trying to take care of my body, rallying the troops against Hermie. I'm in a regrouping mode. Last week, I realized through further research, that I've been incorrectly doing the whole artemisinin protocol. Apparently, cancer cells do most of their reproduction during the night. The highest cell division between midnight and 1:00 am. My researcher who told me to stop eating after dinner, and walk in the evenings for a few hours before pills, never said a time to stop eating. He just said, refrain from eating for 3-4 hours after dinner, then take your pills and go to bed. So, being the old soul that I am. I decided to stop eating by 4:30 at the latest so that I could get to bed early. I like to be tucked into bed by 8:30 pm. Well, guess what, I've been sabotaging myself. The point of this low dose is to ingest the pills between 10:00 - 11:00 pm so that the artemisinin is at its most effective state during the replication of the cells (12:00-1:00 pm) - that's when the cancer cells are most vulnerable. The artemisinin has a half life of about 3-4 hours, so there was still SOME artemisinin getting through, but the doses would be incredibly low and quickly tapering off. Damn it! I'm always effing up things. Usually, when it's not life threatening stuff (like when I put my foot in my mouth), it's hilarious. But in times like this, I just have to roll my eyes, and cringe. I guess it's fitting that my mother's nickname for me is, our little Miss Brooks, from the old TV show. Miss Brooks was always "accidentally" getting into trouble, biting off more than she could chew - or trying to get one outcome and instead having it backfire.

So, my life is upside down ever since last Thursday when we realized that my early-to-bed routine was completely killing the successfulness of the artemisinin. It's nice to know that we can tweak things to make it more effective, but now, I'm completely exhausted. I've been walking for two hours from 8:00 - 10:00 pm every night with Danny, or with girl friends, and then I take my pills and head to bed, finally tucking in at about 11:00 pm.

My plan is to continue this schedule until next week when I can start the chemo drink. I want to keep fighting every single day, giving Hermie no breaks. My sleep is definitely hurting, but I know that I can push through for one more week. Once I get off my sleep pattern it's even harder to get rested, I can't seem to nap or sleep in, but I think this is worth it. I'm giving him a full frontal attack! Down with Hermie!!

I'm still on my whole foods diet, and I've been supplementing with borage seed oil (proven to attack astrocytomas), shark liver oil (immune stimulant), fish oil (helps heal the myelin sheath of healthy cells, increasing neurotransmission), maitake mushroom (proven to attack astrocytomas), shiitake mushroom (immune stimulant), lions mane (immune stimulant), vitamin C 500mg (antioxidant), and Vitamin E 400 IU (antioxidant). All supplements are taken in the morning, and then I'm taking the low doses of artemisinin late at night. On a side note, did you know that tumors can not use fat for fuel? That doesn't mean that I should go out and eat a chunk of lard, but it does make me happy to think about my fat supplements (borage seed, shark liver, fish, flax seed, etc.), all of those healthy fats are helping my body regenerate healthy cells, stimulate my immune system, and rejuvenating my body. That's exciting!!

All in all, the diet is working just fine. I'm happy with what I'm eating. It's lots of veggies, some lean meats like seafood, and then little bits of fruits, nuts, healthy fats and some whole grains. When I have a sweet tooth, I slice up a fuji and powder it with obscene amounts of cinnamon (which helps stabilize blood glucose levels). I'm enjoying my time before the chemo drink because I know that it's going to effect my taste buds and appetite. For now, I just get to enjoy my happy, healthy state. I'm mentally preparing for serious battle, putting on all of the armour (exercise, diet, artemisinin, supplements, breathing, etc.), so that I can come out a victorious warrior during the MRI on July 19th.

Moan & Gripe With Me

Last night, while I was in the shower, I started thinking about how goofy I am. Instead of being excited about the jog halfway around the lake, and concurrent walk the rest of the way home, I was disappointed in myself. What the hell? How backward is that. Instantly, I started laughing to myself and changed my thinking. Exercise is exercise. I flashed back to the days I was in the ICU. I remembered the paralysis on my right side. I remember not being able to walk more than a few steps without being winded and exhausted. I remember months of slowly training to start jogging again, and eventually, my first 10k. I have everything to be grateful about. I might get tired, and yes, that's disappointing, but I'm still here. I'm still nourishing my body with nutrients, sleep, exercise, meditation, and cognitive challenges like reading. My mind and body may be tired from time to time, but they are also the most healthy they've ever been. Sometimes, more doesn't mean better. I don't have to run five miles to get the same results. I just need to do quality exercise, breathe deeply, use it to rejuvenate my mind, and be grateful for the opportunity to work my body. There was a time when nurses told me I might never jog again. I have happily proved them wrong. When I'm down or frustrated, I have to remind myself that, if there's a down side, there's always an up side. I already feel better. Still tired, but much happier! And that's what it's all about :)

Last night Danny got a kick out of my study session. I've been reading the book, Cancer: 50 Essential Things To Do, by Greg Anderson and taking notes. I'm researching the way to navigate through this diagnosis, and learn from survivors. I figure, those who have fought the cancer fight, have learned things about attitude, nutrition, spiritual well being, and much more. The only way to be successful is to learn from others and use a whole body and mind approach. Anyway, I didn't realize he was taking a picture - he thought I looked "pretty cute" all wrapped up in furry blankets. Danny calls me a pillow monster. I somehow manage a way to turn our bed into a mass of pillows, and fluffy blankets. I like my nooks to be cozy and safe.

Just before bed, after I turned out my lamp, I stretched out, closed my eyes, and pictured my body hovering above. I just wanted to picture my body and see what it looks like in my mind's eye. The moment the image appeared in my mind, I noticed there was a light blue, and medium turquoise blue color surrounding my body. It morphed and phased into white light, then pale blue, white, pale blue, finally resting on white as it surrounded my body. The colors oscillated around the peripheral of my body - with no particular section of interest. It was really interesting. It felt good. It felt positive.

I believe that I can make myself healthy, with help from western medicine, alternative treatments, nutrition, spiritual well being, stress regulation, exercise, attitude, and enough sleep. I'm realizing that there's a lot of dedication needed, but it's all for a great purpose, and it helps me excel in all areas of life. Sure, I would love to be sipping on a mammoth goblet of red wine, nibbling on truffle-infused sheep cheese, but seriously, who cares (and someday on a special occasion.....). We can't do everything we want, eat whatever we want, and have whatever we want. That's life. The most important thing to remember is that I have the opportunity to earn my health, and each time I earn something, each time I meet a goal, I'm fulfilled and proud of myself. I just have to give this more time so that I end up looking at this as a lifestyle and not a diet or temporary thing. There will be times when I can take it easy, but I need to earn it. This whole body approach is proven to improve overall health, and that's my goal. I have to stay focused and enjoy the positive effects of the changes in my life since my last MRI. My skin is clear, my weight is down to 140. I'm more calm, and my headaches are minimal. Of the 43 days since making these changes, I've only had 3 or 4 days of headaches. That's amazing.

This diet is not what most people choose to do with their lives. It's quite extreme. But, unfortunately, it's how we should all be eating. I wish it wasn't the case. I wish we could eat sourdough, homemade pizza, jelly, cookies, and all the yummy, white carb, white sugar foods that taste so delicious. The sad truth that no one wants to acknowledge (because it sucks) is that sugar (other than in whole foods) is very bad for you. White flour is very bad for you, white potatoes are bad for you, and table salt is bad for you. If there are ingredients in your foods, you should try not to eat them. Foods should be coming from the source. The problem is that people are busy, or tired, or it's expensive, or whatever. Usually, it takes someone getting sick to change their ways. Sometimes, even then, people don't change. I'm not saying that I can cure this brain cancer just with food choices. I wish that were true - and who knows, maybe I could, but the point is that we need to give our bodies a fighting chance. A platform to succeed. Even if you can't seem to give up all of the bad stuff, just try to cut back. You don't have to be as extreme as I am. Start small. Choose oatmeal over cereal. Choose a spinach salad over iceburg lettuce. Choose a quinoa salad over a potato. Choose brown rice over pasta. Choose steamed broccoli over honey carrots. Choose vegetable soup over clam chowder. Avoid the bread basket. You always have a choice. You DO have the will power if it's important to you. Make your health your priority. If I can do it (even though I moan and gripe), you can do it too. Moan and gripe with me!

My First Article

I'm back home after a week on the island (Friday Harbor). I'm sorry for not contacting people. Sometimes I become overwhelmed by going home. There are so many people that I would love to visit, and since I can't contact everyone, I often end up hiding out. Of course, I can't drive anyway, so that makes it easy to hide.

It's nice to be back. I just did my 40 minute workout - 30 minutes of running with 5 minute warm up and 5 cool down. I didn't feel like working out, but I told myself, now that I have a treadmill in my living room, I need to take advantage of the opportunity.

While I ran, listening to my MP3 player and watching the Jets come back against the Texans, I thought to myself, "I don't live to run. I run to live." What a crazy concept. I'm literally running to defeat the grim reaper. Of course, most people work out to be healthy and live long lives, but I truly feel a responsibility to exercise. While I was on the island I went for a few walks but I didn't run. I was scared to run on the road and go too far from the house. I was worried about having a seizure and not having someone help me. It's these little fears that make me frustrated. The seizures are real, in fact just as I was running on my treadmill a few minutes ago, I had to stop and get water because my right arm started slightly tingling. After I had some cold water it was better. I only had five minutes left of running so I just dialed down the speed. I thought it was important to finish my goal, to set a precedent. It's hard to know when to push and when to back off. I don't want to be a woman living in fear. I want to conquer mountains, not lay on the couch. At the same time, out of respect for everyone who loves me, I have to sleep a lot, and take it easy. Stress and sleep are the #1 killer and #1 healer for brain tumor function, respectively.

My life has changed so much, each decision, every activity. I have to weigh each choice so much, then re-evaluate. I can't just open the door and take off for a jog. Sorry if it sounds like I'm complaining. I know it's not the end of the world, I'm just trying to navigate the new rules of my life. 

Earlier today, as I was watching the national news, a girl was talking about her addiction to sun tanning. She has skin cancer, and yet still tans. She was giggling, and shrugging her shoulders as if to say, "Yep, I'm crazy, but hey, I'm hot." I was shocked, and it really got me thinking. What are people really willing to do when they get diagnosed with cancer or other illnesses? Shoot. I'm afraid to color my hair because of the dye, and here's this crazy girl tanning with cancer. I wonder if beauty can be an addiction? That reminds me, I need a hair cut. I've only had two hair cuts since the brain surgeries. I'm nervous to have someone deal with the scar. It's such a private, graphic, intimate look into my life. It's hard to be that vulnerable sometimes.

On a side note, I my first article was published. If you're interested, you can click on the following link:

Island Guardian
http://www.islandguardian.com/archives/00004017.html

Catching Endorphins

 Danny just cooked me my favorite dish, steamed broccoli. I was going to do it myself, but Danny panicked when he saw me cutting towards myself.  I should remember that trick in the future when I don't want to cook...ha ha ha!

Today, I made it to the 10:15am yoga class, and it was so much fun that I went back and did the 6:45pm class too! Just like cookies, you can't have just one. When Danny and I were driving toward the gym (both times today) I was really dreading the class, but I made it through the front door. I don't know why I was so nervous the second time, already knew what to expect because the same instructor teaches both classes and she was awesome! And, at the night class I had friends to join me - Megan and Sarah. Yet, still, I was slouching down in my seat as I neared the turnoff. I'm serious, I honestly almost sent a text to the girls to tell them that I wasn't going to make it, but then it seemed like a real jerk move, like breaking up with someone over text, or on a message machine, so I plugged through and put one foot in front of the other and made it into the gym door. By the end of the class I was back to being bubbly and full of energy! But good grief I am out of shape!! I may be paying for the double workout tomorrow, but it feels so good, like I'm coming out of hibernation.

I love the gym. There's all different levels of fitness, all different types of hard bodies, and soft bodies, but we're all working toward the same goal of taking care of our bodies and minds. Today at the gym, I received more eye contact, and more smiles from strangers than any other place in public this whole time (although I guess technically the gym is private since you have to be a member - but you know what I mean). Once you put on your gym shoes and walk through that front door, you're just another person trying to catch a few endorphins. Simple as that. It's a community within a community.

Bunny Happy Hour

I'm embarrassed. I've been cranky and negative. The worst part is that I've been feeling sorry for myself. That's embarrassing! It's not about the tumor, it's about how the tumor has effected my life. I miss running, I miss being active, I miss driving, I miss having hair, I miss my pants fitting, blah blah blah. I've been mourning my life, and now I'm fed up of my own whining.

Soooooo, I wrote down all the yoga classes at my gym and I'm going to start doing yoga. Yay! I'm waiting to get cleared for some more active exercising, but at least this has to start somewhere. I'm not going to lie, it's hard to hold back because I miss getting the runner's high, but I have to start doing something or I'll start kicking puppies.

By the way, I have some very good news. Danny and I sat on the patio at the warehouse apartment and watched stars two nights ago. Apparently, happy hour for bunnies is just after dusk. It is a cotton tail paradise all over our back parking area, big bunnies, little bunnies, bunnies doing indos and stoppies (like a little motorcycle that pops up on its front tire), the bunnies were going CRAZY! I knew there was something going on when I realized my plants were mysteriously losing their leaves. The Stewie clan is alive and well! To celebrate, I'm going to hit the plant store to buy a few of their favorite flavors!