Mo For Me?!?

I don't know how to write this blog. I've started and deleted the whole thing about three times already. I guess I'm just at a loss for words. I'm embarrassed but grateful at the same time. It's confusing and hard to sort out. I guess I'll just start from the beginning.

I received an email a few days ago from my good friend AJ. It was an email to a billion of her friends:

Hey guys, 

Matt is participating in Movember this year, although doing it a little differently. He will be growing a nice and bushy stash per usual, but he will be raising money to help out the medical expenses of our dear friend Jessica Oldwyn who is battling brain cancer. To learn more about her brave and courageous story check out her blog: 

www.jessicaoldwyn.blogspot.com

and to monitor Matt's stash growth and to learn how to donate check out his blog: 
www.moforjess.blogspot.com

Please donate!! We thank you for your support! 
AJ and Matt

Of course, as I read it I turned bright red, and thought to myself, "Those little BUGGERS!" They didn't even ask me. Then I realized, of course they didn't, I would have said, "no." :) I don't want anyone to be put out, and I'm already grateful for all of the support emotionally and physically that people give. I'm overwhelmed. It's true AJ & Matt fashion, always thinking of others. They are a force to be reckoned with, changing the world one massive effort at a time. Thank you AJ, for helping spread the word, and Matt growing your lovable facial hair. I am incredibly grateful that you chose to help me in this way.

Matt and AJ have been wonderful friends to both Danny and I. We grew up with Matt, shared a billion laughs and memories, and from the moment I met AJ, I was completely in love. They are both possibly the most generous people I've ever met. When the Haitian earthquake hit, AJ and Matt threw a huge fundraiser in their city of Montreal. From the moment I met each of them, they've lent support, love, laughter, and kindness. They're wonderful.

Not only are they a mainstay in my life, they also are responsible for Danny and I coming together. When Matt and AJ were leaving Seattle and moving to Montreal, they threw a going away party. I remember specifically at one point in the night, I looked over and saw Danny come toward me, precariously carrying three drinks at once (he swore they weren't all for him). I noticed how handsome, how tall and strong he was. I looked into his eyes and thought, "Wow! Danny's looking goooood." He asked for my number that night. A few months later, on our first date, he told me that when he first saw me at Matt and AJ's going away party, he was walking through a doorway carrying three drinks. He said he almost tripped and his heart skipped a beat. He thought, "Woah. Jessie Oldwyn sure has grown up." How cute is that! In the same moment, we were in awe of each other and it's been the same way ever since. I still think he is the most handsome man on Earth. And as you all know, the kindness man on top of that.

Here are some fun photos I dug up to share:

The first time I met AJ. We were all playing home run derby, obviously not taking it as seriously as the boys. 

The going away party. AJ and I were on a hunt for a lost alpaca. The tuques on our heads were to represent her homeland, the great white Canada.

You'd think I'd be crying since she was leaving. Good thing she doesn't appear to be offended :)

The only picture I have with Matt that night is when I stole a bite of his lamb burger. Oops.

Someone told us to look fierce. Done.

Nate (Matt's bro), Matt, Dan & Dallas at Matt and AJ's wedding.

Danny and I at Matt & AJ's Wedding

My brother, Matt, Me, AJ & Larry visiting in Friday Harbor this summer. 

I am very embarrassed to imply that I want people to donate. I am only sharing the information because AJ asked me to. Please check out the blog just to watch Matt's mustache grow, and laugh. He's hilarious, and it will be a wonderful distraction!

www.moforjess.com

What an honor. I've never had anyone grow a mustache for me! So cool.

The Time Will Come

I'm grateful for so much each day. Things pop in my head, and then I start smiling. It can be as simple as, "My house is so rad. It's full of daylight even when it's rainy outside!" Lately, though, I've been going for the big ticket items. My mind has been full of happiness thinking about how wonderful it is that I haven't had a seizure since August 5th (the day before my birthday - I was probably just too excited!). I haven't taken anti-seizure medicine since September 27th. And, biggest of all, as Danny and I were running errands today, I realized that I could have just finished last week as my first week of radiation, but instead, I'm happy and healthy and trying to kill this brain tumor with alternative means. I realize that I might have to do radiation (eventually - if there is no other option, and it starts completely growing like an even nastier weed), but right now I'm enjoying the ability to take this into my own hands.

Yesterday, my parents, Danny and I met with the other brain tumor fighter that has been taking the artemisinin. We met with her and her husband and we shared notes. We talked all about the different protocols, the different research out there, and we reviewed both of our pathology reports and all of our MRIs. It was fantastic and incredibly inspiring. Our friends have managed to completely shrink her brain tumor through alternative means. It's unbelievable. Although we had never met, there had been email after email for the past year or so. We combined heads and together, I feel like we can conquer this.

At first I was very concerned because there are so many different types of stage 2 astrocytomas (which we both share), I wasn't sure if we were matching apples to apples. But after sharing our pathology reports, our friend has the same type, along with the "negative for loss codeletion of chromosomes 1p/q 19p/q (can't remember off the top of my head which one has which letter). Anyway, my point is that I have those two chromosomes, as does my friend, which means that our tumors are more aggressive and signify a shorter lifespan. Anyway, after watching her scans, and seeing her brain tumor shrink and shrink, scan after scan, I knew that things were looking up!

Maybe surviving a brain tumor isn't just about luck, or fate, or genetics. Maybe, just as I was hoping all along, it might be treatable or even curable by using healthy choices, and by following herbal research. There just might be a way to treat a brain tumor with diet and supplements. Sometimes the supplements are in massive doses, but who cares! It could slow, halt, or kill the tumor. Wow. This is so big. I just have to keep positive about this process. I'm taking the safe side, unlike my friend who took some pretty substantial amounts (with no serious side effects), but I figure I can still up the ante at my next MRI if things aren't up to my liking.

I'm just so grateful to have this opportunity to squish this with healthy means. I'm forever indebted to our dear friends.

It is going to be so hard to wait for my next MRI in January. I want to start seeing results now! I keep telling my overzealous soul, "Patience little friend, there is no rush. Enjoy each moment, each day, each kiss, each hug, each laugh, each smile, each apple, each salad, each green smoothie, each new smell. The time will come." Each time I have to tell myself that little mantra, my core warms, my cheeks get rosy, I start smiling, and I feel lighter than air. It's the best. It's my favorite problem to have :)

Truly, how wonderful is it that I am not headed for week two of radiation in the morning. HOW WONDERFUL!!! ! ! I know my oncologist probably thinks I'm stupid, but I don't care. This is my body and my life. I will not give up on it, or take the easy, less effective solution. I will fight, I will laugh, I will live, I will not give up.

Thriving

The other day my mom surprised me with a puppy spa day for Emma. Emma loves getting pretty and clean, and the dog was starting to get stinky. It's our fault since we take her out for jogs, and walks, regardless of the weather. Her nickname should be puddle. Anyway, while the sweet dog was getting beautified, I sat at a cafe next door downloading artemisinin research articles onto the blog.

It was so much fun sitting at the cafe, just a half a mile from our home. I enjoyed the walk, crunching leaves beneath my feet. Even though we've been living in Green Lake for a full month, I still hadn't been to a coffee shop, I had done all of my blogging and computer work from home. It was nice to have music, and delicious smells. The people coming and going, studying, visiting, laughing and reading, it was invigorating. It made me feel alive and important. That probably sounds weird, but there's something about being out in society, amongst people, that makes me feel like I'm doing something, something more than just being, just existing. Anyway, I loved it. Because of my dietary restrictions there wasn't anything I could eat, but I had a hot tea and that was good enough for me. If the cafe was busy I would have left, no need to take up the table, but I got lucky and there was plenty of room. It was a really fun treat, and a great morning (both for Emma and for me).

The downloaded articles on Artemisinin can be found on the right side of the blog, under Pages, and Artemisinin Research. It's just under the image of my big old tumor....oh my gosh, I just checked the link and the research isn't displaying. Damn. There went three hours of time. I'm not that handy with technology, especially when it comes to this blogger stuff. Let me try again and see if I can upload successfully this time. There's no easy way to upload documents. Please bare with me.

On another note, tonight is the WPIG Pigture Perfect Silent Auction! Yay! Hopefully my piece of art will raise a few bucks for Ryther. Even my parents are coming, and that's very exciting!

As for the diet, I've had a few friends asking what I'm able to eat, or what my current restrictions include. Here's my deal:

No meat
No diary (except for a glass of milk to take the artemisinin, dairy fat has the best absorption rate with the pills)
No processed sugar
No four
No alcohol

But, I CAN eat:

Vegetables
Fruits
Nuts
Seeds
Legumes
Whole grains (brown rice, bulgar, quinoa, etc)

Here's a typical day:

Breakfast:

• Green Drink (a blender stuffed with spinach, one cup of water, a teaspoon of fish oil, a teaspoon of flaxseed oil, half a cup of blueberries)
• Vitamin E (400 I.U.), Vitamin D3 (400 I.U.), Vitamin C (500 mg)

Snack:

• Apple or a handful of mixed nuts 

Lunch:

• Mixed greens salad (chopped purple onion, raw apple, ground flaxseed, squeezed lemon, shredded kale, fresh basil, fresh cilantro, chopped raw garlic, cracked pepper - on days when I have it, avocado)
• Black beans or brown rice if I have it left over from the previous night (I cook the beans from dry beans to avoid the chemical in canned goods)

Snack:

• Green Drink (a blender full of mixed greens, and a stalk or two of kale) or an apple (we have a whole box of organic ambrosia's. They're delicious! After that I imagine I'll change up my fruit.

Dinner:

• Mixed greens salad (same as above)
• Steamed broccoli
• Brown rice or some type of legume

Surprisingly, I don't live my life starving. I feel superb. I have more energy, less headaches, and I feel great all around. I'm still have my bad days of exhaustion if I do too much, but I feel so much better. I know that I can live on this diet forever if I choose to. Basically, I eat any and all vegetables, I eat some fruit but I try to keep it limited. Same with the legumes and whole grains, if I eat to much of those I get bloated and I get a stomach ache. I also prefer to eat raw veggies (except for broccoli, raw broccoli grosses me out).

So there it is. That's my basic diet. If you live in Seattle, or head there from time to time, my new favorite place for fresh juices and raw vegan food is Thrive Cafe. It is truly unbelievably delicious. It's heaven. Try it out! My favorite fresh, organic juice is Refresh, and I finish it off with an Elixer Shot, the Cobra. Both are delicious and make you feel like you're ready to run a marathon, and conquer the debt crisis, both at the same time. 

Not A Freak-Er-Out-Er

The past few days I've been collecting medical records. I took a bus yesterday to get copies of all of my MRI scans and all of my radiation reports. Oddly, it shows that there was no tumor growth until between the MRI of July 14th and this current MRI. That means that all of the new growth was in a 3 month period. That's really bad. I didn't freak out when I read it, which is surprising. I guess I'm not much of a freak-er-out-er (I leave that to my mom - sorry mom, but it's kinda true). I have bouts of panic, every couple of months or so, but for the most part I'm oddly calm about this whole thing.

I cried four days after this past MRI, but it wasn't about the request to start radiation. It was after seeing a friend for the first time. Our friend Eric stopped by the house to drop something off, and after he left I finally started crying. I sobbed and told Danny that it's so hard to see the kindness in peoples eyes, and the sadness, and it's because people love me and they care. I hate that my friends and family have to worry and hurt over this. I feel like this brain tumor shouldn't exist. My friends shouldn't have to know about this area of life. It's not like my friends need a lesson in compassion, they're already at their full compassion level. I don't think any of them could be more compassionate in their lives, even before they had this whole tumor thrown in their lives. I just hate this. I hate that people hurt. I hate that people are scared. And it's all because of me. I'm sorry to all of my family and friends that this tumor is effecting you.  

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. If I move, even a tiny flinch, during treatment it will damage a whole new host of healthy brain cells, killing them. The first appointment will consist of 30-45 minutes of my face being screwed to a table while they measure things. Then the following appointments will be a one hour block. They will strap me down and screw my face in to the table, then there's the 10-15 minute radiation with the beams. It will be 3-4 high powered beams going through my entire head from all sides, converging at the back of my head where my tumor mass is located.

Side Effects:
     Short Term:
          Fatigue, Edema (accumulation of fluid in the brain), Seizures, Hair Loss (very likely permanent in the tumor area, but they'll know for sure after three weeks into the radiation), Nausea/Vomiting

     Long Term:
          Second Malignancy (a second or more tumor in another area of my brain), Damage to Normal Brain Tissue, Memory Loss, Face/Neck Skin Pigment Change, Sight Loss, Language Loss, Movement Loss, Neuro-Cognitive Loss....all of these long term effects are permanent damage that will not come back.

The kicker of this treatment is that it will not add any time to my life span. None. Basically, they will radiate the entire circumference of my old tumor, and add a buffer zone where they will kill healthy cells around the area to try and kill any invisible tumor cells in the outside area. The biggest concern in my mind is that my tumor was massive. Therefore, the buffer zone around my tumor area is quite large. That's a lot of damage to a lot of healthy cells.

The doctors say that the long term effects are permanent. They believe that radiation, right now, is the right choice because they believe that all of the short and long term effects will happen anyway as the tumor grows, so they believe that zapping it right now may slow some of the side effects. I guess they're expecting me to eventually have no vision, be paralyzed, have limited speech, limited cognitive abilities, and have to deal with a second or third, or however many more brain tumors in the rest of my head. This is crazy.

I keep thinking and thinking about this radiation and it just feels wrong. I just can't do it. I can't damage my brain, and my body like that. My radiation oncologist already doesn't like me because I refuse to get back on my anti-seizure medicine. I try to keep it light and tease him, but he is unimpressed by my chutzpa. I figure, it's MY BODY. It's MY BRAIN. It is NOT his brain. When I tell him I'm not going to do it right now, I know he will act like it's some grave mistake, but you know what - it's not his tumor. This is my life, and he can shove it. Sometimes I feel like he's drooling over my brain, and that's creepy. He has bought into the "standard of care" doing radiation, and I believe that there are other answers.

So, instead of jumping on the killing machine, I've started a new alternative therapy. Some of you might think I'm crazy, but that's ok. It is widely known that our FDA is hand in hand with pharmaceutical companies, and that they fund most research. That makes it incredibly hard to get valid alternative treatments recognized in the US. If there's no money in it, it's hard for hospitals and practitioners to jump on board. It's just our system.

I'm going to find my own way, right now using artemisinin (the main ingredient in anti-malarial drugs). If this doesn't work, I will try something else, maybe the Burzinski Clinic in Houston. I will not kill my body. I have been very fortunate to have a brain tumor fighter contact me to share their fight, and success of stopping, shrinking and then killing her brain tumor. Her husband has joined my fight to help me beat this. They've shared their MRI's, their techniques, their recipes, and their research. It's fantastic!


Here is what I'm doing:

• At breakfast or lunch I have 500mg of vitamin C, 400 units of vitamin E (with mixed tocopherols), and  a D3 vitamin
• I stop eating at 4:30pm
• Four to five hours after eating dinner, on an empty stomach, I take 2 capsules of Artemix and 4 capsules of Butyrex (I might end up adding a ferrous iron supplement too, but I need more information). 
• Between dinner and the pills, Danny and I take a quiet, relaxing walk, or visit, or watch a movie. Or I'll take a bath. I try to use that time to decompress. 

The premise of this treatment is that the artemix (consisting of artesunate, artemether, and artemisinin) binds to the highly iron filled cancer cells and kills them. 

Obviously, I'm not a doctor, and I'm not recommending that anyone do what I'm doing. If you're interested in the research let me know. I'll try and figure out how to add a page to my website and include all of the reasearch documents. I'm not going to include the MRI's, but the research alone should impress.

When I received the results of this past MRI I was in shock for two days. Then, I went into a deep depression. I would wake up and head downstairs to my favorite chair. I wouldn't get up until my bladder hurt so badly I thought it would explode. I couldn't get myself to the shower, I didn't want to eat, I didn't have the energy to talk to anyone or get on the internet. I was scared if I talked to friends I would just lose it and cry uncontrollably. So, I isolated myself. Things are looking up though. I'm happy to say that I'm on an upward swing. I was so scared, and it seemed so unreal, but the more resesarch I read about the artemisinin the more hopeful I become. It's an amazing cancer fighter for many, many types. Maybe, after all, I will cure this. Maybe I will be that 1%!

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.

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.

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.

MRI

In 24 hours I'll be back in my bird machine, feeling the pulse of the magnet. Here's to hoping for zero new growth!

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 panicked.

Anyway, even though I'm pretty positive I will opt out of radiation (at any point), it's still scary and it obviously weighs on my subconscious. It's completely counterproductive that I gorged myself on Halloween candy. I wish I wasn't an emotional eater.

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 is probably good because I would have eaten my weight in icing. As it was, I ate all kinds of delicious crap. It was fun! And then on Sunday night Danny and I realized, that once you get the taste of blood it's really hard to stop. The cravings are tricky, and it's so easy to go get crapy food. Crapy food melts in your mouth then hits your stomach like a rock. Healthy food has crunch and within moments you have more energy and you feel better about yourself. Even knowing that, it can be really hard to forgo the instant gratification that my tongue is pleading for.

Here's a photo of our group. I'm so proud of everyone. This marathon relay was my dream, it's my little baby. I always wanted to get a group to celebrate running and friendship. It's just a very, very happy thing for me. I've got a great group, and I can't wait for next year!! I guess you could say that my only long term goal right now is to be healthy for next year's race! Is that weird? Maybe I should have a different goal. I guess it's the only long term goal that I have because I'm always afraid to plan too far out. It's also the only thing on my calendar that's a year away. I can train for it too, which keeps it easy to use as a long term goal. It's concrete, and I like that. Anyway, here's the fabulous crew......

Operation Grab-A-Stein III

"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 that's dear to you, just do it. Even if it's $20 or old books that your children don't read. There's always a place for reused things. Over the past year and a half, since the original diagnosis, I've received financial gifts in the mail, money in a donation account, cash stuffed in my hand, and I'm telling you, $20 melds into $100 and all of a sudden a payment on a bill is paid. It has all been out of the goodness of people's hearts, too. I've cried multiple times from the generosity. It's just overwhelming. I like to think that money has a life of its own. It passes from hand to hand, and to me it represents kindness, generosity, piece of mind, well wishes, and wherever I donate, or pass on my money, I hope it sends love around the world, weaving its beautiful little way on the path that it takes. I am in a great position to give to the Ryther organization. I might have medical bills, and a crazy brain tumor which requires expensive alternative treatments, but I can still give a small amount. A little bit goes a long way. I challenge you, next time you see something you believe in, donate $10 or $20 dollars. I guarantee you won't even know it was gone.

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.

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. 

Lopsided Unicorn

I've been doing too much and it always catches up with me. Two days ago, I couldn't get out of bed. I was too exhausted. Brain tumors suck. It always works like this. As long as I get 12+ hours of solid sleep each night, I can function really well. If I get less than 12 hours, my head throbs constantly, I'm exhausted, I'm dizzy, my mind's cloudy, and I am unable to function. I'm not even capable of reading a book, it's too tiring. The worst part, is that I'm unable to nap when I'm at my worst. I just look like a zombie, shuffling to the bathroom and back to bed. I swivelled to the foot of the bed so that I could stare at bingie my gray cat. Luckily, he sleeps all day so I had company.

When I'm doing well, and I'm rested, I feel like I can conquer the world. I'm ready to try and take buses, or walk around the lake, even cook a new recipe, but when I crash, I really crash. It's exhausting.

Also, when I'm exhausted, and without enough sleep, the screw in the front of my skull hurts more severely. I can't remember if I've mentioned the fact that I have a screw loose. Literally. I started noticing it in May. At first my oncologist's nurse said it was a ball of nerve endings, not a screw, but I had a feeling she was wrong. I kept telling Danny that it's a screw, and it's going to get worse. When I went to the headache specialist in July, she said it was noticeably the screw from the brain surgery. Apparently, my body is slowly rejecting it. The only thing they can do is another surgery, but at this point I feel I'm better off managing the pain by getting enough sleep and using over the counter medication.

I never thought that the screws would come loose. I assumed that surgery was a one time deal, or until tumor growth. Apparently, according to my doctors, it's very common to have your body reject screws, it's just not supposed to happen for years and years. I wonder how long it will take my horn to be noticeable to others, right now I can disguise it with my poofy bangs. Maybe I'll be a devil for Halloween since I already have part of the costume. Or, I guess I could be a lopsided unicorn. Either way, at least I have options.

Tossing Frizzy Hair To The Wind

I read a quote today that really got me thinking. "It's only in the present moment that we find real happiness, love, or wisdom." If we're reminiscing about the past or anticipating the future, we're not enjoying our life as it is. I'm completely guilty of that. It's impossible to always be in the moment, but I think it behooves me to just take things as they come.

I enjoy fond memories, and I love my time in fantasy land for the future, but truly, my happiness is definitely in a single moment, changing into the next single moment. It's as simple as watching a squirrel bound across the street. Life is always changing, it is never stagnant.

It's hard not to anticipate upcoming events, like my next MRI on the 25th, but I am making a conscious effort to just take it easy. To me, taking it easy, is finding things in my surroundings that make me smile. It's as simple as the smell from the laundry when I'm folding clean clothes. Or, it's a leaf that's suspended in an almost invisible spiderweb imitating a baby bird (that actually happened this morning - it was freaky).

Living in Greenlake has opened me up to a whole new world. There are cars driving past our window, kids walking to school, joggers racing by, squirrels running with nuts in their mouths, and the wind constantly swirling things all over the place. I feel alive here. When I'm stressed (for example just about an hour ago), I bundle up, walk over to the lake and wander around on the path. I have a massive park just outside my doorstep. It's unbelievable. Earlier, I even went in the rain. For my college friends, they will be shocked. In the past, I blow dried my hair to perfection, then either flat ironed it or made the perfect waves to look natural. If my hair was going to get ruined by weather, I wouldn't go outside. It's embarrassing. Now, I toss on a raincoat, lace up my sneakers, and throw frizzy hair to the wind. What a change!

I feel lucky. I'm happy to be alive.

Racing The Bus

Metro was a success! Our place is less than a ten minute walk to the downtown bus stop. I came with my pockets jingling with change, and my heart racing. I was excited and nervous. So much so, that when the bus was driving through downtown Seattle I hopped off a bit early. Like eight blocks. Oops. I was scared to pull the cord to stop the bus so I just followed some people and hopped off the steps.

The best part is that as I was walking, the bus kept dropping people off, then stopping for lights. I was going back and forth racing the bus for at least two blocks. It was hilarious and slightly embarrassing. When I told him what happened, Danny said I shouldn't be embarrassed, but instead I should be proud that I kept up with the bus. Of course, he was laughing hysterically when he said it. It's ok though, I was blushing and giggling at myself as I wandered through the streets of Seattle, headed to Capital Hill. It was one way to learn the city, I guess :)

Dr appointment went well. They're getting my pathology for a second opinion and then they'll book the procedure. The doctor was absolutely fabulous, Dr Miller at Virginia Mason. I lucked out and was randomly booked with him. If anyone needs to meet with a dermatologist, he's incredibly kind, intelligent, and to the point, a great combo.

First Solo Metro Experience

Things I've learned living in/about Greenlake:
1. There are as many dogs as people
2. Dogs don't mind wearing soiled poop bags on their back as long as they get to go outside
3. Dressing up is wearing Lululemon
4. One out of two drivers stop for pedestrians (a great ratio for the city)
5. People smile when you walk/jog by
6. Bus routes are convinent to get into the city, or anywhere else you need to go

So far, this neighborhood is perfect for me. I am officially in love.

Our house is a complete disaster zone, although better by the hour.

We live one block from a bus route and three blocks to another. This afternoon I am going to attack the metro to get to my doctor appointment on Capital Hill. I am nervous and excited to navigate the city alone. We'll see how it goes! It had been sunny and warm, but the clouds are rolling in. I might be walking in the rain. I guess it's now or never - maybe it's best I just jump in and get my feet wet :) It's going to be raining indefinitely for the next 10 months anyway. I kid, I kid - I'm sure there'll be a few rainless cloudy days too.

Little Bad Mole

About a month ago I had an appointment with a dermatologist to check all of my moles. Unfortunately, two moles were removed and one of them came back with precancerous cells. Although it's not a very big deal, the pathology showed that there is still some precancerous cells in the area around what was previously the mole. I was supposed to have a one hour procedure tomorrow to remove the rest of the dangerous area, but this morning I panicked.

You see, the area in question is on my breast. The doctor already removed a big chunk and she wants to go back in. I'm antsy, nervous, apprehensive, and all around sick about the thought of going back in. A woman's breast is a very private area, and is such a symbol of femininity. The first procedure took three weeks to heal, and now it's a big ole' lump of scar tissue.

I might not be able to avoid another procedure, but I cancelled the one for tomorrow which was supposed to take place in Wenatchee. Instead, I called Virgina Mason in Seattle which is a leading medical center for dermatology. I have an appointment for Friday to have an initial meeting, at which point I will have a referral for the surgery.

It's odd, I have been more upset about this silly little procedure than my brain tumor surgery. At least I now know that I will be in the hands of the best at Virginia Mason. I've learned a lot about medical things in the past year and a half, one of them being, go to the best whenever you can. It's your body, and anything less than the best is less than you deserve. Follow your gut and don't feel bad. It's your body and you are your best advocate.

I know that this goofy little mole thing that I'm cleaning up on my breast is absolutely NOTHING like breast cancer, but it makes me feel for all of the women that have (or have had) breast cancer. That is some scary, scary stuff and for me it has been incredibly violating. I have a whole new respect for breast cancer fighters, survivors, and victims. I admire you. Truly.

Crab Apple Kitty

Stella is in kitty cat heaven. At the vet's office, she was gently given a sedative and she walked into my lap. She relaxed, and when it was time, I laid her down onto a blanket. They injected her rear leg so that I could pet her head. I laid my face onto the table, and looked into her eyes. I told her how wonderful she was and what a good girl she was being. I watched the light go out of her eyes, and although I was sobbing, it was a relief to know that she wasn't in pain any longer.

It's amazing how quickly health can deteriorate. Yesterday was the first time I've watched life go out of a body. It was not easy. All I can hope is that when I die, I will have someone petting my head, looking me in the eyes and telling me kind things.

It wasn't just me with Stella yesterday, it was also my mom and dad. We all cried. We all loved her. I couldn't help them, I didn't have it in me, but they buried her underneath their crab apple tree. It's a befitting location since she was also known as a big B to so many. My mom always laughed that I would call her Pretty Pretty Princess. Stella was a tough, sassy, sharp clawed time bomb that was not safe around children or most adults. But to me, she was my tame little kitten.

Good-Bye Old Girl

Breakfast Soup/Smoothie

It looks gross, but I'm telling you it's delicious. Here's how you make it. Chop up one nectarine (make sure it's super ripe - very fragrant) and toss it in a blender. Once it's blended fill the blender full of spinach (stuff it in there). Add water to the thickness you desire. Add 1-2 tablespoons of flax seed oil. Blend it all together until it's thick and kind of frothy. Aaaaand, serve. It's delicious. You can't even taste the spinach. In fact, it tastes like a nutty nectarine drink. It is wonderful!

That is how I started my day. I'm trying to be good to myself because today is the day that my baby princess Stella the cat will be leaving this world. I slept on the floor with her last night in a sleeping bag. She has trouble getting onto the bed these days. I've cried and cried, and cried and then cried some more and I know that I still have hours of crying in the future.

As I told a friend in an email today, since I don't have children, this cat has been my baby for the past eight years. She was a stray that needed love, and I was fresh off of a disastrous breakup. My fiance called it off less than two months before the wedding by using the words, "I'm not attracted to you anymore." If that doesn't hurt, I don't know what does. Mark that down as possibly the worst breakup line in history. My parents helped me move from Texas to Wenatchee, Washington and that is where a sassy, headstrong cat came into my life.

Ever since we tamed her, she has followed me around like a shadow. She has been a rock in my life, a confidant, a snuggle buddy, and entertainment. She makes me laugh so hard.

The other day, while I was packing up for the big move, I found a journal. It was from several years ago. I had started writing to an unborn child, a child that I hoped I would someday have. In it, as I was writing, Stella came up and curled up on my lap. She always had a sense for when I needed love. You see, I was married before Danny (it was a few years after the bad breakup - my twenties were quite eventful). On the day after the wedding, my husband told me he no longer wanted children. We had talked about having children the whole time we were dating, and then all of a sudden, in one day, a very important after the fact disclosure happened. I should have just annulled it then, but I thought that I had a responsibility to my husband, and the ideal of marriage. Three years later, the inevitable happened. It wasn't just the child issue, it was everything, everything was wrong. My main point is that I had several very sad, very hard years. I felt isolated, unloved, and trapped. Through it all, I had Stella. She never left my side. We gardened together. We went on walks. We cleaned the house while I cursed her in jest for being so hairy. She was my baby. Even when I would go on trips, she was always waiting for me, excited to be with me, always happy or ready for a nap.

Sometimes a pet is just a pet, a fun little buddy to make you laugh or enjoy for entertainment purposes. Stella was a friend. One of my best friends. 

I know it's time to let her go. She just threw up again last night even though she has been on two different types of medicine, one of them twice a day. It's so hard to play "God" and put her to sleep. It feels wrong, but it feels even worse to make her suffer. She's in a lot of pain, and it hurts me to look in her eyes and see the sadness.

Enjoying Life's Pulse

We should have the keys to our new place in Greenlake in two weeks. Fun! This move signifies freedom for me. I will be able to walk all over the place running errands. It's literally thrilling. My heart starts going crazy just thinking I'll be able to take care of myself, and the daily things for Danny and I. It has been painful to be stuck in our Wenatchee home, isolated from humans (other than my parents and the friends that stop by). I can entertain myself, I like to listen to music or do things around the house, but there's something about being around people in public, looking at life as it goes by. It's fun. It's therapeutic and magnificent. Life has such an amazing pulse, it's in humans, in pets, in the animals in nature, trees, plants, bugs, even the wind - and when it's all combined, when you look around, it's a lifeblood.

Breakfast On The Patio

I've already been packing for a few hours this morning, but it's time for a breakfast break. I toasted a piece of Dave's Killer Bread, sprinkled an egg with loads of turmeric, and chopped a clove of garlic for the top, and I've got my broccoli tea. I would have added sprouts on top of the toast, but I'm fresh out. It might sound like a crazy meal, but it's delicious and full of cancer fighting elements. Turmeric is insanely important to fight cancer, it's right up there with the brassica family.

I think the hardest part about dealing with cancers and tumors is the diet. There are so many different voices from specialists and they definitely don't all agree. Each illness varies, with the exception of sugar. Sugar feeds cancers and tumors. Sugar is incredibly bad for you. The dispute falls between the doctors that believe that all sugar is the same, and others who still recommend fruit in the diet. (The doctors who recommend removing fruit from the diet exchange the fruit for supplements to get the essential antioxidants and other benefits from the fruits without the sugar.) Some strongly believe that not only breads, pastas, and rice need to be avoided, they also want whole grains out of the diet. I just know that I can't live without some whole grains, so I'm still including healthy whole grains, but keeping the carbs as a small portion of my overall diet.

The brain tumor suggestions for diet is a complete mind game. It's tricky, it's frustrating, and if you over analyze each piece of food, every meal, looking for failure, it will make you crazy. It's impossible to overlook diet, it's the number one way to try and slow the tumor growth but I still have days when I eat poorly. In fact, for the first time, Danny and I went camping. I hung out with our friends eating Cheetos, and Polish sausages, but I'm still sick from all of the bad food. That's the thing that's crazy. If you eat really healthily, if you take a day or weekend off, you will pay for it. When I woke up on Sunday, all I wanted was a cabbage salad. Sounds weird, but my body was craving the crunch and the way I feel after I eat it. 

Our First Camping Trip

Tapering Off

Today is the first day that I'm not taking an anti-seizure pill (although I have to take one tomorrow). YAY!

Let me explain. Originally, I was prescribed 1000mg of Divalproex a day. Last week, I only took 500mg per day and now, I'm down to a pill every other day for the final week. By next Monday I should be done. I'm FREE! Hopefully, not only prescription free, but also seizure free.

I want to thank my friend Nancy who is a pharmacist. I was adamant to get off of the medication, and my nurse at the UW, as soon as I told her I was not going to follow her standard of care, never again responded to my emails for a taper down schedule. So, Nancy helped me plan a tapering of the drugs and I really, really appreciate it.

I have been incredibly fortunate to have so many people helping me throughout this journey. At each turn, I get great support.

I'm still scared to have a seizure, but each time the fear creeps into my mind I take a nice deep breath, and exhale slowly. I will not live in fear. I will not take drugs that wreak havoc on my body and mind. I will not give up. I will not just do what the doctors tell me to do. I will make my own decisions. I will research my options. I will try to keep my care natural. If my health deteriorates, I will reevaluate.

A final email from Walt (sent to all of Dee Dee's friends), Dee Dee's husband, which I received this morning:

Hello all, 

This note is to let you know that Dee Dee passed away in her sleep early this morning. It was a long journey for her and we trust she is now at peace. I know how much your love and support meant to Dee Dee over this last year. Thank you for that. 

We plan to have a gathering at the Senior Center next week and will send out a notice once arrangements have been made.
 
Walt

May Dee Dee rest in peace, and Walt know that he's loved. 

Prayers For Dee Dee

I received a very sad email this morning. You may remember Dee Dee Pearce from the comments on my blog. Dee Dee has always shared kind words of inspiration, always lifting me up. When I started my struggle, she was dealing with some abnormal breathing issues. The doctors ended up finding a large tumor behind her lungs (which they believed was benign) and as things progressed, it turned out it was lymphoma. (I'm simplifying her journey here - it is long and arduous, although you wouldn't know it by her attitude.) I'm very, very sad to share that her condition has greatly diminished. For islanders, you may also remember her as Diane Pearce. She gave many children (including myself) piano lessons. Here is the email, please read it below and send your love, your positive thoughts and prayers her direction.

Hello all – It has been quite a while since Dee Dee’s last update, so I will fill in with a current status report. A little over three weeks ago, Dee Dee’s health started into a steep decline. Her strength has eroded daily, her appetite has diminished, and now she sleeps most of the time. A hospital bed was brought in for two weeks ago which has made her far more comfortable. She is frustrated because she has lost her ability to speak, for the most part. A few of Dee Dee’s closest friends and I are providing 24/7 care. Dee Dee enjoyed several home concerts provided by our musical friends. These were a real joy for her. Though she is too tired now to receive visitors, I know she cherishes the memories of those visits as well as the many notes, calls, and cards from you. Thank you very much for your support during this time. 

Walt

It breaks my heart to think about Dee Dee in pain, unable to do the things that she loves so dearly. She loves her horses and music; her joy is in the beauty of nature and those around her. Dee Dee has been a rock in my support system, and I am so grateful for her. Please help me send love waves her direction so that she can have a full warm heart, no pain, and more energy so that she can visit with her husband and friends.

On another disappointing note today, my cat is very sick. The vet thinks it's bone cancer. I know it sounds crazy to love a cat so much, but I've been crying all day. I pictured her, Stella the Pretty Pretty Princess (a nickname that I always took seriously, but everyone thought was a joke because she used to attack people), on my lap until the end. In fact, I was more worried that Danny might get stuck with too many pets if I die. It didn't occur to me that she might die first. How selfish of me. So, in the meantime, by the recommendation of the vet, we're going to pump Stella full of oral pain killers, vitamins, steroids and antibiotics, hoping that it makes her better. It's not lost on me that I'm doing to my cat what I won't even do to myself. At least I have a few weeks before I have to make a decision about Stella. I can't even think about it without sobbing.

The bright side of this tough day, has been the decrease of my medicine. Instead of just becoming despondent with all the bad news, I took a 2 hour nap then got back up. I did a load of laundry and started a new batch of sprouts. Just but cutting back to one 500mg pill a day of the Divalproex gives me more energy. The energy helps me conquer more, and put things in perspective. It helps me keep a positive spin. Although I've been crying off and on all day, I'm still functioning. That's big news for me. It makes me feel strong and capable. Capable of anything, even kicking this tumor's butt. I'm just sad that we can't all kick cancer's ass together.   

Good-Bye Anticonvulsant.

Sorry, I've been off my computer for a few days. My mind is mud. I can't think. I have had nothing to write because my brain is a slug. I have feelings and thoughts, somewhere in my gray hazy matter, but I can't connect to them. I can't even do more than basic sentences without needing a break.

Doctors don't even know what exactly causes seizures. They think it's an overactive brain (I'm simplifying here), therefore they prescribed me a drug that blocks or slows specific neurotransmitters. Now, I'm running on a portion of the firing that I usually have. My brain is half asleep. Think lobotomy.

Yesterday, it got so bad that I emailed my nurse and told her I want off the Dekopate. I asked for a schedule to decrease the medicine. It's too much. Also, over the weekend, I noticed a small rash on my right shoulder. In the Patient Advisory Leaflet (pharmacy info) under the Side Effects portion, it says, "Symptoms of a serious allergic reaction include: rash..." It continues to mention that the rash is a sign of severe liver problems. That sounds fun. All in all, I'm exhausted, mentally slow, my vision is blurry, my moods are horrible, my heart palpitates and I'm just a fraction of myself. I can't even write. I can't think.

So, today I did not take my morning anti-seizure pill. I emailed my nurse and reminded her that I want a schedule to decrease the dosage, and I mentioned the rash. 

I refuse to live like this. I might not be able to control some of the biggest things in my life; I can't drive to get to the grocery store or even a doctor's appointment. I also can't change the fact that I have the tumor nugget growing in my brain. But I can limit the bad drugs that ruin the quality of my life. It's one small step that can help me be happier.

On this pill I feel like I'm slipping away. I just want to get back to being me, even if that means a seizure here or there.

Sprouts Days 2 & 3

Day 2

Day 3

The babies are growing! Each morning and evening I fill the jar 2/3 full of water and swish it around. I drain it and leave the jar propped so that any excess water will drip out. I keep the jar in a dark area, nice and cool. The only problem, so far, is that I want to eat them now. I can't wait to be able to eat them every single day!

Sprouts X2

I'm starting a new round of broccoli sprouts. Hopefully, this time, with all of the helpful suggestions I will be successful. I feel like the instructions in the pamphlet were lacking detail. It was confusing. Either way, I'm trying again. I'm starting with three tablespoons of seeds and about a cup and a half of fresh water. They're going to soak overnight in a dark place and rinse them in the morning. I'll let you know how it goes :)

Minutes Into Soaking

 

I'm Becoming A Mossback

Well. Things changed again. I never started taking the new pill. When we picked up the new prescription the woman behind the counter said, "That will be $192 please." I looked at her wide eyed, and quickly asked her if I HAD to buy it. Fortunately, she was incredibly kind, and said absolutely not. She recommended that I contact my doctor and ask for a different, more affordable drug (for the record $192 was just the portion that I had to pay out of pocket, the full price tag for the drugs for those without insurance was almost five hundred dollars. Yuck).

I have yet to contact Dr Graham. I'm so over this stupid anti-seizure debacle. It's never ending. Right now our lives crazy anyway. I'm sorry to drop this news over the blog instead of talking to everyone in person, but it's too hard to contact everyone. Danny got a job back in the elevator/escalator trade so we're moving back to Seattle! It's a fantastic job, and I'm excited to watch this next phase of our lives unfold.

Within the past five days Dan got a job, started safety training, we researched places to live (we already knew the areas we wanted to live), found the perfect place, and signed a lease. We move in on October 1st. It is a 6 minute walk from our new home to a PCC Natural Market. It's also a fifteen minute walk to the library. To save the best part for last, we will be living one block from Greenlake where we can walk on the trail. We get to have our dog Emma, and cat Stella. It's very exciting! Obviously, it's going to be incredibly hard to move away from my parents, and all of my amazing Wenatchee friends, but we will come back to Wenatchee often, and our friends will always be welcome in our guestroom.

It's going to be a healthy lifestyle change for us, this new move. I'm trilled that we have the opportunity to walk for groceries, and books. I can't wait to link my hand in Danny's, grab Emma and walk on the lake path. Our new little home has a communal garden which I can weed and eventually contribute to, and I'm thrilled to learn about the plants living on the wet side of the mountains, it's a whole new zone. This home is such a gift! What an amazing opportunity! Now I will be able to walk everywhere. I will have foot freedom!! WOO HOO!!! I had been very isolated since I could no longer drive. I feel a huge weight off my heart. I'm ready to explore and test my limits. Maybe, eventually, I'll even find a way to get from our place to my oncologist's office through the bus routes. I've only ridden a city bus once (thank you Auten, that was fun!), but I want to become independent again. As long as I don't have a stinking seizure in public. That would be embarrassing.

As for the anti-seizure medication challenge, I'm taking a break. I'll still keep taking my current drug to appease my oncologist, but if things worsen I'll contact her and try again. It's tough. Danny and I talked about the whole medication issue again last night and he strongly feels like my current drug is not a viable solution. But what do you do when things are so busy, life is changing quickly, there's packing to do and a move across the mountains. We still need to maintain daily life, and I feel like on this medicine alone I'm barely keeping my head above water. Additional medication might cause me to sink. Sometimes it's simply a fact of bad timing and if we do too much at once, at this point, I might explode. I guess Divalproex is going to have to be a stop-gap. We will revisit the anti-seizure medication next month. In the meantime I think I'll try to do some extra meditation. It couldn't hurt.

Meds Meds Meds

Sorry it's been so long. Our lives have been nuts. We've traveled from Wenatchee over to Seattle, then back to Wenatchee and then within 24 hours we headed back over to Seattle where we've been for the past several days. We're trying to get my anti-seizure medicine dialed in. Our first appointment was with a neuro-oncologist, and she seems to be incredibly kind (we had never met her before). We talked about the different side effects from the medicines and they all have very similar problems. Mainly depression, suicidal thoughts, suicide attempts, irritability, anger, panic attacks, violent attacks, frustration, exhaustion and weight gain. Of course, not all of the side effects occur in all patients, but I hate that I see several of them in my current drug and feel them in my daily life. It makes me feel trapped in my body. In the appointment we talked about the other anti-seizure medicine that I took before and after the brain surgeries, Keppra. I had forgotten the name, but I was quickly reminded by Danny that the drug had the same side affects as my current drug.

Anyway, Dr Graham (my new neuro-oncologist) prescribed a new drug and we went to fill it. After having read all of the paperwork I started freaking out. The drugs are so strong, and I would have to stay on my current drug for two months while slowly increasing the new drug. Double medicine? Seriously? I can't even handle my current drug! After the two months I could decrease the amount of the old drug.

The worst part though, is that the new drug carried an even more severe side effect on top of my current pills...if I was to notice any type of rash on my body, or sores in my mouth, I had to stop taking the drug immediately. The irritation showing the fact that it was causing my immune system to fail which could kill me. This drug literally can lead to death. What is more stressful than that?!? It's the whole thing I'm trying to avoid! Why in the world would I risk my health just to stop a seizure or two? I don't care if I never drive again, I don't want to take these stupid drugs! The neuro-oncologist took this side effect quite seriously, in fact one of her other patients called it "The Death Rash." She was teasing, but I believe there's always a percentage of truth in each joke. When we were leaving our appointment, Dr Graham gave her personal pager (for use day or night) for immediate contact in case the [death] rash occurred. Exactly what you want to hear when starting a new drug.

Later that night, Danny emailed Dr Graham, and we decided that this is the wrong drug. I told the doctor that I hate taking medicine already, I don't do well with extra hormones or medications of any type. I feel crazy from these stupid anti-seizure pills. Anyway, I told her I would be willing to try one more different type if we can get started within a week, but I'm not willing to wait for two months with progressively negative side effects. I feel like I need the benefit of the pills to out weigh the cost and at this point they certainly do not.

So, today I will start taking a different, newer pill on top of my current pills. It will be bad for a week and a half where there's an overlap of drugs at which point the old drug will be weaned off. I will be doubled up with side effects so I'll probably be a raving lunatic that wants to snap puppies necks. This is the last chance cafe for my neuro-oncologist to trick me into ingesting these poisons, after that, if this doesn't go well, I'm just going to risk it. Forget the anti-seizure medication. I don't need to drive, I can swim in the kiddie pool, etc. I'm happy that Danny and my family give me full support to make my own decision. They've seen the side effects and they are completely on board. In all of this craziness, their support puts a smile on my face, and with this drug that is definitely a difficult task to accomplish.

Ok. I'm over myself. I hate complaining and yet I still do it. Here I am, I'm annoyed by myself. I'm alive. I have a kind, thoughtful man, a patient family and amazing friends that know when to distract me with laughter and when to just give a hug. Sometimes I have to remind myself that nothing is that bad in life until there is no life to live. It really snaps me back into reality.

Divalproex Is The Devil

The past few days have been tough. The family has been researching different alternative medicine, different unusual treatments that are being used in other countries. We're lead to them by other brain tumor patients who have had success. It's wonderful, and yet at the same time I feel overwhelmed.

In the meantime, we're trying to get appointments with a neuro-oncologist to deal with my anti-seizure medicine. The side effects are too extreme for me. I'm grumpy almost all of the time, depressed for no reason. I'm trying to keep a happy face, but I'm just having such a hard time functioning. There are lots of other anti-seizure medicine out there, so I'm hoping that we can find a better fit. If I can't find a good fit, I might just get off the medicine and elect to avoid driving and other activities that would be dangerous for a seizure ridden person. I feel crazy. I'm definitely not myself. My radiation oncologist already told me that anti-seizure medicine (for a person with my diagnosis) may not even change a thing to avoid an episode. With that lingering in my head, I'm not going to lose myself in medication at this cost.

One more thing. I'm sure it's nothing, but I had an atypical mole removed on my chest and the pathology came back positive. I now have to go back in for more digging to remove the areas around the mole and have it sent for even further testing. I'm feeling fine about the results, especially after having friends share some scary stories about precancerous mole episodes, it's just not fun.

Normally I could shake things off, but right now I'm just in a funk. I'm funky. My vision is blurry, I can't shake my head quickly, I'm groggy, I sleep over 15 hours a day/night, and my eyes are watering, but I'm not crying about anything. I'm not sad, I'm just emotional. I HATE PILLS. Specifically, divalproex (depakote).

Friday Harbor Photos

My Brother (Kaal), Matt, Me, AJ & Larry

While I was in Friday Harbor, I had a chance for a quick visit with friends. Friends have been such a lifeline on this crazy ride. I can't say enough how much the love is appreciated. By the way, AJ is preggers! With TWINS!! A boy and a girl. I'm thinking the perfect names would be Jess & Danny. Or maybe they could use our middle names, Lynn and Wesly. Just a thought :)

Day 3: Broccoli Sprouts

Things are not looking very good on the sprout front. I'm actually afraid to take a photo to share...I'm going to suck it up though, and go take one. Cringe. Ugh. I don't know what I'm doing wrong. My mom said this was going to be, and I quote, "Sooo (very exaggerated) easy."

I'm so disappointed with my sprouts. Good grief. I'm capable of growing things outside! I swear! Here's some proof. It's not quite the garden from last year, but there's still a bunch of delicious and beautiful things in there.

Apparently, my wild bunny has hankering for the spicy stuff!

Last night, Danny and I were sitting on our patio when we heard a hummingbird swing through. Dan grabbed the camera, and took the follow photos. As you can see, the little guy wasn't exactly the hummingbird we were expecting...

Click To See A Larger Photo

See what you think. I'm on Team Moth. He's pretty when he's looking away, but jeez, that mug is a face only a mother could love.

This is what I do to distract myself from the unknown. I'm scared about the seizures. The other night I woke up at 3:30am and I had a sort of panic attack, or crazy headache, I'm not sure exactly what it was. I don't know how to explain it. Anyway, my mind was going a million miles per hour with thoughts, then everything went blank. I felt like I was about to have a seizure. It was very scary. I ran to take my pre-seizure pill and then laid on my back in bed, trying to practice my meditation breathing technique.

I don't know what else to do. I take my seizure medicine and I sleep as much as I can. I exercise regularly, I'm only running 10-11 minute miles for 30-40 minutes every other day, but I'm working toward going faster again. The only other key, that I can think of, is a healthy diet. I'm not sure what else I can do. I'm reading a book about meditation and trying to practice stress management. I honestly am at a loss. I think I seem completely normal to people, but I sleep so much, and I'm exhausted constantly. I try to put on a happy face, and usually that's a true feeling not a facade, because I don't want to focus on the scary stuff, but jeez. I feel like I'm continuing to deteriorate. Specifically since the seizures.

Thankfully, my parents noticed my difficulties and talked to Danny. We had all been feeling like we were sitting, waiting, for doctors to radiate my brain. They aren't proactive, their specialty is radiation. Anyway, now we're trying to take another avenue. My parents contacted John Hopkins University for an appointment. We're hoping that they'll review my medical records and they can help us figure out another step in my care. We want to do more preventative stuff. I don't want to waste a moment. It's better to stop the growth than to try and resect again, or radiate.

I know it's pointless to stress about my health, in fact it's detrimental, but those who are around me all the time (my mom, dad and Danny) can see changes in my capabilities. That scares me. And, it scares me that it scares them. I wish this whole tumor debacle would just evaporate, just *POOF* be gone. My parents should be hosting BBQs with friends, laughing and living their lives. Danny should be dreaming about having a life with babies, the family he has always wanted. Kaal shouldn't be worried about his little sister. The rest of my wonderful family, Danny's amazing family, my beautiful friends, everyone - people shouldn't have to worry about this stupid tumor. I don't want to cause stress, but I can see it in people's eyes, and I can see it in their tears. Sometimes the tears are happy ones, other times they come from heartbreak. I'm sorry that this tumor is growing. I honestly thought I would be an exception. As Susea likes to say, "Shoot. Some lucky dog has to win." It's tough to be in that 1%. There's a lot of competition.