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October 2011

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It’s Official: Brain Cancer

There’s an argument in the medical world about brain tumors. A stage 2 astrocytoma often isn’t called, “brain cancer” – it’s just referred to as a stage 2 brain tumor. It’s not until stage 3, does the world refer to an astrocytoma as malignant. That has always baffled me. I’ve listened to my doctors over the past year and half, listening to the voice fluctuations, the terminology, waiting for changes, trying to make sense of their words. This past appointment on the 25th was eye opening. It was the first time my radiation oncologist spoke of my brain tumor as cancer. Before that, he only discussed the “tumor.” I have brain cancer. Yikes. That sounds a hell of a lot worse than a brain tumor. I was happier with the brain tumor label. But he’s right, I don’t exactly have a brain tumor anymore, they removed the tumor and now I just have cancer cells all over the back of my brain. Some in nuggets, others invisible to the scientific eye. Frightening stuff. So here’s what we learned at the appointment: Average growth of my type of brain tumor is approximately 4mm a year. From April of this year to October (this appointment), my brain tumor grew by 4.5mm. That was a 4.5mm growth in six months. Bad deal. My radiation oncologist wants to start radiation therapy right now. Here’s the information he gave about the process: It will be conformal radiation – they will radiate the whole tumor area. It will take 5-6 weeks. It’s a treatment every day except Saturday and Sunday. To start, they will create a mesh mask that they will form to my face. They will then lay me onto a table and screw that mask to the table so that I can not move….

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Radiation?

Took this while I was in our room waiting for results. Never the sight you want to see. A sober reminder of what we’re going through. It’s real. It’s growing. It has grown a lot (for my type). They had been watching a section of tumor and it has almost doubled in size. They’re also watching a different area that is a conglomerate of cancer cells. My radiation oncologist wants to start radiation. Since Danny was at work, I told the doctors that I needed to discuss the options with my husband. They were seriously upset that I’m not on anti-seizure medicine, but we held our ground (thanks mom & dad for helping my case!). Right now, even though we all knew this was almost inevitable (other than a miracle), I still hoped I was doing enough to slow or stunt or even completely stop the growth. Apparently, I’m not. Maybe I can’t stop it. Maybe this is just my lot. It’s scary and disappointing. I want to hunker down in a hole lined in down comforters. I want a thousand pillows surrounding me, and Dan engulfing me in his hug. I want the two of us to disappear and morph into a dreamland full of bunnies and kittens, and warm breezes. Sorry if I don’t answer the phone, or emails. I need to absorb this. Dan should be home from work soon and we’ll need space. Thank you for understanding and thank you for all of the love. I appreciate all of the texts and emails, and posts on the blog. I’m floating above myself, blurry with confusion. What do I do next? What is right? Can I win? Can I beat this? I’m not going to give up, but I do need to regroup.

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The MRI was considered “worrisome.” We’re on the free shuttle from UW to Harborview to meet with the oncologist. The scans were heart dropping. My stomach is in knots. I feel like crying, I’m nauseou s and I want to curl up in bed with Stella. Since I have to keep my chin up and head to the gamma knife center for this impromtu meeting, I’m glad I wore my slippers 🙂 More news to come.

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Woke up at 5:30am and can’t sleep. Dad’s drinking coffee, cup by cup, and I’m trying to relax. Mom’s asleep and Danny’s at work. Two more hours and it’s game on! I might as well shower, my curly hair is fluffed up to no end. I look like a muppet.

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Emotional Eating

Bad foods cannot live in my house. I only have self control when I have no other option. Unfortunately, Danny and I bought Halloween candy on Friday, and I have been devouring it. I can’t stop myself. It’s horrible!! I think I’m emotionally eating because I’m scared for my MRI. It’s not just the results, but also everything that comes with it, the needles, the IV, the contrast dye, the machine, the smells, the other people in the beds next to me (some with obvious recent surgeries, others not so easy to figure out), it’s everything. I am 80% sure that I will not do radiation even if they recommend it. I have heard over and over from all of the doctors, that radiation will not extend my life. They claim that it’s supposed to improve the quality of my life, but looking at the seizure medicine and how they said the meds would improve my quality of life (what a joke), I feel like I have to do what feels right to me, not what the doctors say. I had a nightmare the other night. I dreamt that doctors administered radiation while I wasn’t paying attention. They concluded the radiation several months before I realized, and I didn’t notice until I reached to feel the back of my head, quickly realizing when I had a massive bald area (it’s very common for radiation to kill the follicles around the tumor area – often never growing back). When I woke up, I felt around on my head for any abnormalities, taking care to touch every single millimeter of scalp. I have incredibly vivid dreams, to the point where sometimes I don’t know if I’ve dreamt something or it’s a memory, so it was incredibly scary. I woke up sweaty and…

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Watercress & Wunder Runners

Recently, a fellow brain tumor fighter sent me all kinds of information on Artemisinin, sulforaphane and sweet wormwood. The research is incredibly promising, and it looks like I will be starting an alternative treatment based on the research. The best part, according to the research though, is that I had already been including a lot of the main foods that cause the death of the brain tumor cells. A lot of the research is relating to sulforaphane in the brassica family, and sweet wormwood. Although I have not been taking any supplements, I have been eating a diet highly enriched with the brassica family. In fact, I just ate my breakfast of an Omega 3 organic free range egg (it gets the extra omegas from flax in the diet), sprinkled with turmeric (a healthy teaspoon), placed on a slice of sprouted bread which was stacked high with watercress leaves (brassica family) and sprinkled with a clove of diced raw garlic. Needless to say my breath is ripe, but my macha green tea is helping calm it down. My Little Watercresss Plant I bought a living watercress at my PCC the other day. I’ve been picking off the leaves of the poor plant every time I walk past it. It’s delicious! It’s spicy, and helps disguise the garlic, which is a plus. I don’t always eat so wonderfully, for the record. I have to be honest. Last weekend was our third annual Oktoberfest Marathon Relay, and it happened to fall on a double birthday weekend. The birthday girls were Meghan, and Jenny. So, of course, I brought two dozen organic cupcakes (gotta love that it’s all organic ingredients, it makes it sound healthier, but the truth is that they were loaded with scrumptious mind altering SUGAR. Yum!). I didn’t make them, which…

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“Hope”

A very good friend, Meghan (you may remember her from other posts, or her parents who housed Danny while he was training in Portland), has a non-profit philanthropy called WPIG. She knows I love to paint, and although I didn’t have the energy to do it last year, this year, I created! It’s not the masterpiece I envisioned, but it definitely depicts my personality. There’s an art auction in Fremont, at the Fremont Abby Arts Center, on Friday November 4th at 7:00pm. If you’re going to be in the area, buy tickets and come! I guarantee that with this crew of WPIG members, and WPIG supporters, you will have an unforgettable night filled with laughter, smiles, hugs, handshakes and beauty. If you can’t attend, and you’re interested, there’s several different options to donate on the WPIG website. “Hope” The art auction is a fundraiser for Ryther. I highly recommend you check out their website; my favorite tab is, Ryther Voice. It’s incredibly inspirational and moving. I think the best virtue in humanity, is kindness, and Ryther is full of volunteers and workers that are forging to make our world a better place. There are so many kids that need help getting on their feet, and at the risk of sounding preachy, I believe that when people strive to meet their potential, we all succeed. About Ryther:“We serve children and adolescents referred by parents, physicians, state agencies, courts, schools and other providers working with children. We have expanded our services to include programs and solutions for families with children who have challenges stemming from trauma, mental illness, substance abuse, Autism Spectrum Disorders, or adjustment issues with school, peers or parents.” – http://www.ryther.org/ I know that there are a million, or actually billions of places where people can donate their time or money, so please don’t get overwhelmed. Wherever you can donate, to any cause…

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Mushroom Madness

Yesterday, to get myself out of the dumps, I jogged to the bank and deposited some checks. Outside, on the street below a ‘no parking’ sign, this is what I saw. Mushrooms. A gaggle of mushrooms on the street. This is how damp Seattle is. I love it! Good old mushrooms. The sucker outer of toxins. I took it as a good sign.

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Some Days

There is definitely a system to the sadness: three good days, one bad. I’ve been trying to jog around Greenlake to make my moods better, and it always works. The hardest step is the first one, out the door. There’s a pulse; the path vibrates with heartbeats. I visualize a hum hovering over the runners, the walkers, the strollers, the bikers, a collective sound of conversations and thoughts. It’s unintelligible, but that’s perfect. Leave everyone with their privacy.  My next MRI is mocking me, poking me with its’ bony, skeletal finger. The last MRI showed some growth. Not enough to do anything, but some growth is too much. Each day, although I know that I have a brain tumor, I wake up and live my life. I walk downstairs, put the tea kettle on the burner, and wait for the whistle. Sometimes I leave the house, and sometimes I don’t. Sometimes I take care of emails and important things, but other times I just don’t have the energy. Even when I’m exhausted, I still like to think that I’m the same as any other person my age, but the truth is that I’m not.  I am too tired to work. I’m too tired to take care of lots of things in my life. It is too much to deal with bills and email, and stuff. I’m sad that I can’t do all of the everything I used to. I’m sad that I have a new version of normal. My head hurts. I’m scared. Some days I’m carefree, and others, like today, I’m just sad.  It’s hard to win this game. 

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