Surprise Wedding

I can't believe we pulled this off!! We just threw a "Surprise Wedding" for the most amazing and deserving couple. #tears #bucketlist #mylastdays2 #braincancer #livelikeyouredying #ittakesavilage (literally)

A photo posted by Justin Baldoni (@justinbaldoni) on Aug 15, 2015 at 5:48pm PDT

So Justin Baldoni, and Wayfarer Entertainment just helped me surprise Danny, and my family with a wedding. Everyone thought they were coming for my 35th birthday party, but when they arrived the film crew informed them to please take a seat for our wedding. It's a very long story and it has been incredibly hard for me to keep the secret. It was absolutely unbelievable with all kinds of surprises. Our episode won't air until January or so, and I don't know how much I can divulge, but in the meantime let me just give a few teasers: personalized message and invitation from Pete Carroll (PETE CARROLL!!!!), a gifted Nicole Miller dress from the upcoming 2016 line along with a hand written note, video messages, Vinny's catering, gorgeous flowers, Archie Brooks officiating. Dan and I have been legally married for awhile now but it has been impossible to do a wedding because of our financial responsibilities due to my ongoing medical treatments. The wedding was incredibly small, and I wished I could invite everyone, but Wayfarer hosted it (along with some amazing islanders donating various aspects). It was not our money, so I was just grateful for the opportunity. When people give you gifts you just say thank you, you don't ask to see if you can invite more. It was such a gift, and a beautiful dream that we had always wished for. There were beautiful toasts. There were songs sung, dancing, a little rapping, beautiful toasts, it was hilarious and heartfelt. I can't believe I was able to surprise my parents, Danny, Linda, and all of our guests. It was the most fantastic day!!

The love I have for Danny is the most special thing in my life. I can't wait for the television show to air so that people can celebrate in our love too. They took hours and hours and hours of footage, and I hope I get to see a copy of people's interviews and responses. The whole point of us sharing our story is so that other people can learn from our experience with cancer, that it could help people. 

The crew was absolutely amazing, wonderfully kind. They are kind souls with huge hearts. It was an honor to be chosen for this docu-series, and I hope it really helps people. Wayfarer Entertainment gave me the beautiful wedding, but what was even better is that they helped me keep it a secret to surprise Danny and our parents, and all of our friends. That was a gift that I got to give them. Danny was over the moon, along with our friends and family. It was the most heartfelt evening I've ever experienced. 

And the biggest thanks is to Libbey & Nige for letting us commandeer their new house which they have lived in for only two weeks. Talk about great friends! That was probably the most magical part of the entire day, that we are so loved by our friends. We are the luckiest people on earth to have such generosity and kindness. I'm still reeling from all of the excitement. In fact, it should be sung from the mountain tops how amazing Becki Day is. She is a complete rockstar wedding planner, problem solver, and connector of people. Without Becki Day navigating this event, it absolutely wouldn't have happened. Who in the world plans a wedding in Friday Harbor in early August, the busiest wedding time of the season, in only two weeks?!?! Two weeks! And it was stunning and seamless. I can't say enough about her work ethic and attention to detail. What a treat for us!!  

I'll be sleeping until Wednesday so that I can manage my flight to NYC for my immunotherapy. I'm exhausted. In fact I don't even have a voice, I literally lost it. Hopefully I can rest up and start feeling better within 72 hours. Talking in interviews, emoting and going all the way back to the beginning of this journey to review our trials, was exhausting. 

Okay time to sleep. Love and thanks to all. And I'm so sorry that we couldn't invite everyone. It hurts my heart that we had to keep it small, but sometimes that's the only option when you have such a huge network of friends, and supporters. 

Invisibly Expensive

I'm feeling so grateful to be alive today. For some unknown reason, the sentiment is stronger than usual. It's palpable. It feels good!

I feel like one of the luckiest girls in the world. To have grown up on one of the most beautiful islands on the planet, to wander down to our pond with Kaal watching tadpoles morph into frogs, to collect beach glass on sunny days walking along South Beach. To be influenced by the gracious and reprimanding adults of the community that helped mold me. To learn from teachers who watched me grow from the time I was a toddler, pushing me to always challenge myself, to never settle. To get to experience Costa Rica as an exchange student in high school; realizing how amazingly different cultures are, yet noticing the similarities of human nature. That I was able to travel to Texas for college, experiencing the unique world of Southern Charm. That in my late 20's I was able to explore Thailand with only a backpack strapped over my shoulders. That I was nurtured by Friday Harbor and West Seattle friends who happened to live there, softening the blow of fear as I traveled alone. I was able to analyze who I was, who I wanted to be, what I believed in, and I spent a lot of time questioning the purpose of life. It was a time of epiphanies, of self growth. Then came deep love. True love. The partnering with my soul's mate. Which too soon, came the headache, the demanding of a MRI, and ultimately the moment that turned our lives upside down. That I survived the first tumor resection, then almost died from the blood clot in the tumor cavity. That I learned how to speak again, and read, and write, and walk, then run. That I have survived a second brain tumor, and now I'm fortunate enough to travel for medical care. That I am here, that I'm able to fight for my health. That I currently am without a tumor mass in my brain. It's amazing!  

Last night my buddy Jess and I were laughing about my body. We laughed because Dan and I may not have fancy things, or expensive cars. We don't own a house, or have any assets. Instead, last year alone, we had just shy of $90,000 of medical deductions for our taxes. And that's only the amount that the government recognizes as tax deductable, we had more that we could not write-off. Essentially, in one year, my body cost us over $100,000. It's weird, I'm not draped in name brands, or fancy jewelry, but I probably cost more than 90% of the outfits walking around even the most expensive stores. I am invisibly expensive. Like a diamond in the rough. 

It's humorous, the expense of my body, but at the same time it's kind of sad. I wish Dan didn't have to spend every extra dollar on my health. I wish he could fix up his car, or have a vacation that wasn't centered around a medical shot, or Dopa PET scan. I wish I could give him the wedding he deserves, or shoot, just provide the honeymoon (hubba, hubba). But we will never spend the money. We can't. 

I am deeply happy to be alive, to be able to walk outside and brush my fingertips across our beautiful blue hydreangeas, or kneel down to trace the back of my had across our soft lambs ears (yes, yes I know, technically they're weeds, but the bees and butterflies love them so much). I'm am immensely grateful to be alive, and when I feel disappointed by the inevitable burden that is placed on Danny and my parents (who provide the venom and help with the cherry sales and many things during surgery times and so much of my emotional support), I try to remind myself that we can always get 'things' later. That life won't wait. That my medical care isn't an option. We work so hard to get to the place that most people take for granted. It's not their fault, it's human nature. Young people aren't supposed to get sick. We're supposed to hearty, and healthy and invincible.  

When I feel sad about the things that Dan doesn't get to do, or how his life is changed by my health, I try and picture myself on the west side of the island being whipped by the salty air, or I anticipate the sweet scent of native blackberries that will permeate the air very soon. I just change the subject, and hope that my health will continue so that burden of me, and my care, will lessen. That someday we will be more normal. To not have such financial demands. That I will be able to someday fulfill Dan and my dream of owning a home, and for me to bear him children. It's scary to dream, especially in a world like ours that is so fluid, and unstable, but if you aren't dreaming, then you aren't living. And if you aren't living, you're just not dying.

Here's a delicious drink I created yesterday on my quest to survive this Seattle heat spell. My favorite part is the froth on the top, but if you don't like that just give it a quick swirl with a spoon before you poor. This is not a smoothie, it's light, and meant to be poored over ice.

Kale Cooler

1 liter coconut water 

1/2 cucumber (with peel)

5 large kale leaves (stems removed)

1 celery heart & leaves (I eat a lot of celery as snacks so I keep the hearts and leaves for my smoothies.)

1/3-1/4 cup mint (stems removed)

1-2 inches of ginger root (peeled)

Here's the nutritional information for the whole pitcher: 

The total calories for the entire pitcher: 348. You can add extra water to dilute and the concoction will go even further. I like to drink a full, regular glass, then I keep filling the cup with water because it retains some of the green goodness as flavor.

Don't just not die. Do something that makes you feel alive today. 

Nature's Heartbeat

"Life is occupied with perpetuating itself and surpassing itself; if all it does is maintain itself, then living is only not dying."

That quote is from a random book I read over the weekend while staying at George & Diane Steed's guest house in Friday Harbor (my brother's wife's grandparents). I can't remember the name of the author, but I'm pretty sure the book is titled Voluntary Simplicity, or something similar of that nature. Reading it, as it was published before the mass of home computers and cell phones, was fascinating. In fact, the Steeds are facinating. The guest house had no TV, no radio, not even a clock, and I loved it. You could hear the crashing of waves from time to time, as they're out on the north end of the island just off the water, and it felt like a heartbeat; that I was snuggled safely in Nature's womb. Dan would still fiddle on his phone, but I completely powered down. We played Chinese checkers over decaf coffee in the morning, and listened the birds outside our window before bed. It was glorious. 

I visited mostly with Diane. She is so interesting, very well read, and curious, and happy, and kind. Dan and I noticed, as we were laying down for a nap one of the afternoons, how much of a treat it was to visit with people of the Steed's generation. We don't get to visit and hear stories from octogenarians very often. The stories we get are from books, or movies, or TV shows. They're often fabricated, or embellished, or extreme, or third party accounts. To hear from real people about their experiences, is a special treat. If I lived in Friday Harbor I would want to visit them all the time. Listening to their stories is like being told unique secrets. Secrets that so few get to hear. 

Life happens in the blink of the eye and each moment I get to spend hearing other people's life stories, the things they've seen, the lessons they've learned, the views they have formed - especially those with some experience under their belt - helps mold me into a more compassionate and open minded person. And it helps me grasp the enormity and the subtleties of the human journey. 

While we were there, we had another rainbow sighting, again with no rain. She popped up while we had been watching the 4rth of July parade, and had to sneak off to do venom. Dan's mom drove the venom down from her fridge and as I laid in the back seat of the car, and Dan dropped the drips into my nose, with my head hanging out the door, I looked up and saw my friend the rainbow. If I had not been upside down, I would never have seen her. Sometimes, even when you don't know it's there, you're being protected, watched over. 

And finally a picture of one of my best buddies, my niece Isla. 

If you look to the back, between Isla and my head, you can see Dan in the background. 

Happy 4th!

1st Cherry Delivery (this year)

Thank you thank you thank you for buying cherries at Kings Market & Market Place!! You guys are so wonderful!! I love it when you comment about buying cherries, and the emails, and the text messages!! It's like you're sending me hugs, and it makes me feel incredibly special. If you take any photos, I'd love to add them to the blog!

We delivered on Saturday, and the whole trip was a blast. Hanging out with Dan is my favorite thing to do. He appreciates my rediculousness. We were stressed about missing the ferry (which we didn't) but spent the entire trip laughing. And a road trip to deliver cherries might be the best thing ever. It was so much fun! The best part was getting to thank everyone at both grocery stores. This is our third year of selling cherries, and it's a wonderful fundraiser. More than that, though, it's really fun to have something to provide, to not just ask for help. Usually my dad does the deliveries, since I can't drive, and it was nice for us to take over and accomplish what he normally does since he's away getting venom. 

I can't thank you guys enough for all of the support. I love doing the cherry sales, and I feel really fortunate that Kings and Market Place partnered with us to make this a reality. 

Thank you thank you thank you thank you!! :))))))....(that's my smiley face with a bunch of extra chins because I'm so happy).

Cherries Are A Superfood!

I'm home, and although I tried getting back to bed this morning (at Dan's request) I can't help it but hit the ground running. My parents will be here in a few hours to spend the night, as they're flying out to get more venom tomorrow morning (man three months goes by so quickly!). My dad brought us his truck (thanks Aaron for the canopy!) so that on Friday after work, Dan and I will drive over to Wenatchee and spend the night at my parent's house. Because - for the first time - I get to pick up cherries from Stemilt and deliver a batch to Kings and Market Place in Friday Harbor. I am so excited to put faces to names, and say thank you, and give some hugs. Usually my dad, or my dad and his buddy Ron deliver cherries. The whole delivery is really quick, picking up at 7:00 am, driving to the ferry in Anacortes, taking the first ferry we can and then unloading at both grocery stores and then we're back on the next ferry off the island so that we can make it home and rest. Isn't it crazy how everything always bottlenecks? NYC, venom, cherries.

Cherry season is my favorite. They're so delicious! And really fun to eat. I mean, maybe not if you're really proper, but I'm more of a goofy tomboy who enjoys spitting the seeds. My mom has always called me G.I. Joe Barbie because I want to do what the boys do, but I like to do it with a dress, or a skirt, and now that I'm a little older, makeup. I like to be in the competition, in the mix. Now cherry season has gained even more significance. I get so excited for this fundraiser (which sneaked up on me). This year, instead of one big drop, we've divided it into three deliveries to Kings and Market Place in Friday Harbor. So to all of our Friday Harbor friends, when you're walking through the produce isle next week, and you have a hankering for cherries please know that I appreciate your support so very much!

Just yesterday I had to write the check for my shot and with the Euro so strong against the dollar it was over $5700. The treatments are stupid expensive, but surviving seems pretty smart, so whatever it takes I'm willing to do it. Also while at the doctor in NYC I discussed the sodium phenylbutyrate again. He said that it not only helps reduce glutamine/glutamate absorbtion which would slow tumor feeding, but also, the drug is a gene modifier. The problem? The market price is currently over $6000 a month. That's the actual cost of the product used in clinical trials. There is also a chemist's reproduction (you have to find a chemist pharmacy) which is not exactly the same as the drug, but very similar, essentially it's a knockoff. And it comes in at around $1200 a month. The third option is the supplement Butyrex which I own and have taken from time to time. But it's degradingly weak in comparison to the drug. So much so that it's probably a joke for what we're drying to do. There is one health insurance in the United States that will cover sodium phenylbutyrate for malignant gliomas, Aetna (technically it's an off label drug for urea cycle disorders). I do not have Aetna, but since I lost my insurance due to the Obama health care act (long story) and they bounced me down to Medicare, there could be a way when I renew in December to opt into Aetna for prescriptions. It will take until December to find out, but at least there might be a chance. As an aside, a while ago I spoke to the mother of a young woman who has taken sodium phenylbutyrate for around a year (or maybe it's two years by now) and she didn't have any real symptoms. Now, you might think I'm crazy that I'm talking about adding more treatments, but these tumors are invasive, and they morph and outsmart even the best cocktails. I mean, when you get a promotion, you don't just sit on your ass, it sparks you to keep the momentum going! This tumor is my career; I get paid in time. I don't want Hermie to come back. I refuse to be complacent. And if the additional treatment has a low risk profile, I don't see why not. Especially when we already know that IDH1 tumors, like mine, love them some glutamine/glutamate.

This brings me to a another fun rabbit hole I fell into while traveling. Are you guys familiar with methionine? I wasn't until I read THIS STUDY on the airplane last night. For those who don't want to read through the article, it's about dietary changes that you can make to prevent, and mitigate gliomas. One of the points was to focus on methionine restriction, which is an amino acid that is found in the heaviest doses in animal products.



Of course, then this morning, I had to know more. I started searching "methionine glioma", "methionine seizures", "low methionine foods", "methionine longevity". Each search result gave me more information, and more avenues to explore. Again I see that a vegan diet is best, but if you can't go strictly vegan, it would behoove all of us - especially cancer fighters - to cut back on animal products. Even the research with the ketogenic diet shows that it's not healthy unless it's restricted. A purely ketogenic diet is horrible for you. It irks me when I see articles and news reports touting the benefits of the ketogenic diet because they're missing the key point which is the restriction. The diet is actually mostly fat. Like 80% fat. So, of course you're eliminating a lot of glutamate/glutamine, glucose, methionine, etc. Heck, the restricted ketogenic diet is actually more like an elimination diet. You remove a lot of allergens. Anyway, not my point. The reading from last night and this morning reaffirms my choice to go heavy veggies, with an emphasis on superfoods (it really should be a one word term).

See - I can't help it, I start doing tumor research even when I'm supposed to be focusing on my seizure issues. The seizure issues are incredibly complex, almost too complicated to figure out. And the research about seizures is either very inconclusive or correlative but not necessarily causal. There's just so little we know about what causes seizures, or how to prevent them. Another horribly complicated riddle. I actually enjoyed researching methionine since there was clear information I could absorb and use. But for now, I'd better give my brain a break before it short circuits again. Also, thanks for all of the recent comments lately, I'll go through them soon!

My Inner Coward

My favorite photo of Chicago. Matt and my gummy bear race in his, Miriam and Nate's room. It's fun to laugh with friends that we've known since we were little. Matt & Nate lived next door since the time I was in middle school. I remember, from time to time - when I was lucky - getting rides home from school from the neighbor boys, saving me from the one mile walk along the dirt road. The Wight brothers. They were always down for a little basketball at their place, or mine, you would hear a ball bouncing and it was on. I have so many amazing memories in Friday Harbor. Sometimes I wish I could go back in time and relive it all over again. Back to a time when my biggest concern was earning my driver's license.

I'm writing another post because I can't sleep. I feel like I have adrenaline bursting through my veins and nausea, along with dread, fear, and some sadness. I am one of those girls that is walking with the weight of the world on her shoulders. One of my favorite TV shows is called Parenthood. Dan can't stand it because it seems too realistic, but for me that's exactly what draws me in. One of my favorite things in life is watching human dynamics, and relationships, ebb and evolve. I'm in a vulnerable place right now, inching toward the knife, again attending appointment after appointment, MRI after MRI, reality into reality, deeper I go. In my show one of the characters has been diagnosed with breast cancer and the storyline stirs up so many emotions. It makes me confused, and reminds me of so many things. I find myself watching with tears running down my face. It feels cathartic and yet masochistic.

I am terrified of undergoing another brain surgery. I am scared for my head, all my little happily rebellious hair follicles, the scalp, the skin, the scar, the skull, the dura mater, the meninges, my brain tissue, oh wow, my poor body. Last time I went under the knife it was not an option. This time, I worry that I might regret walking into this. It could cure me but it could also kill me. That is a heavy burden and it's mine to bear. There are craniotomies performed all the time, hundreds perhaps thousands, I'm sure, most days of the week all over the country. I love hearing success stories, but unfortunately, I hear mostly those of horror. And with my history of complications, I feel as if I have plenty of reason to be concerned. I feel as if I am in my weakest point, that my warrior spirit is at an all time low. I'm still happy and enjoying my life, I'm laughing a lot, but deep in my soul it's stormy.

I don't need anyone to fluff me up and build my confidence if it isn't genuine, but if you could be strong for me, I would greatly appreciate it. I am unable to bear more than my load, and I'm sorry for that. I wish I could be stronger.

On Our Way

**************WRITTEN 6/2/12*****************

Thank you for all of the cherry sales, and donations! Thank you Susea & Sandy for helping Dan and I find a room to stay in LA!! Thank you Big Wave Dave & Sally for letting us stay in your home!! Thank you Auntie Lynn for using your air miles for our flights!! We are completely taken care of, all we need to worry about is making the correct medical decision, and I know that very soon, we will have the information to do that.

At 4:55 pm today, Dan and I fly to California to get answers. Who knows what will happen. We will keep you posted.

Thank you for all of the support, both financially and emotionally. It's crazy to think about another brain surgery. I'm finally understanding that it's not just a brain surgery, it would be MY brain surgery. They would shave my head, put me under, saw open my skull, dig around in my tissue, screw the skull back together, staple my skin back together, and then wake me back up. It's pretty intense. And that's if they don't wake me up, it's a whole new ball game if it's another awake craniotomy. But, we don't need to worry about that quite yet. We still don't know if we're going to join into the trial. First things first we'll meet with Dr Linda Liau.

If you're in Friday Harbor for the Fourth of July, please go watch the parade for me. Best. Parade. Evah!! Seriously, it is the best in the nation.

If you're interested in reading an article about a different clinical trial given by Dr Liau, please scroll down.

Personalized vaccine doubles survival time in patients with deadly brain cancer

By Kim Irwin March 21, 2011

Dr. Linda Liau

A dendritic cell vaccine personalized for each individual based on the patient's own tumor may increase median survival time in those with a deadly form of brain cancer called glioblastoma, an early-phase study at UCLA's Jonsson Comprehensive Cancer Center has found.    

Published last week in the peer-reviewed journal Clinical Cancer Research, the study also identified a subset of patients more likely to respond to the vaccine — those with a subtype of glioblastoma known as mesenchymal, which accounts for about one-third of all cases. This is the first time in brain cancer research that a subset of patients more likely to respond to an immunotherapy has been identified, said the study's senior author, Dr. Linda Liau, a Jonsson Cancer Center researcher and a professor of neurosurgery.

The study found that the vaccine, administered after conventional surgery and radio-chemotherapy, was associated with a median survival of 31.4 months, double the 15 months of historical controls in the published literature. In all, 23 patients were enrolled in the Phase I study, which was launched in 2003. Of those, about one-third are still alive, some more than eight years after their diagnosis.

The study also found that the vaccine was safe and that side effects were minimal, limited mostly to flu-like symptoms and rashes near the vaccine injection site.

"This is quite an encouraging result, especially in an early-phase study like this," Liau said. "It's promising to see patients with this type of brain cancer experience such long survivals."

However, Liau cautioned that the findings need to be confirmed in larger, randomized studies. She currently is leading a Phase II, randomized study at UCLA testing the vaccine in newly diagnosed glioblastoma patients. The patients will receive either the standard of care (surgery, radiation and chemotherapy) or the standard of care plus the vaccine. The study is a multi-center trial, and UCLA is the only site in California.

How the vaccine works

The vaccine preparation is personalized for each individual. After the tumor is removed, Liau and her team extract the proteins, which provide the antigens for the vaccine to target. After radiation and chemotherapy, the white blood cells are taken from the patient and grown into dendritic cells, a type of white blood cell that is an antigen-presenting cell.

The vaccine preparation from this point takes about two weeks, as the dendritic cells are grown together with the patient's own tumor antigens. The tumor-pulsed dendritic cells are then injected back in to the body, prompting the T cells to go after the tumor proteins and fight the malignant cells.

"The body may have trouble fighting cancer because the immune system doesn't recognize it as a foreign invader," Liau said. "The dendritic cells activate the patient's T cells to attack the tumor, basically teaching the immune system to respond to the tumor."

The individualized vaccine is injected into the patient in three shots given every two weeks for a total of six weeks. Booster shots are given once every three months until the cancer recurs. Patients are scanned every two months to monitor for disease recurrence, Liau said.

Success with mesenchymal glioblastoma

It has recently been discovered that there are at least three subtypes of glioblastoma: proneural, proliferative and mesenchymal. During the course of her study, Liau and her colleagues saw that one group of patients seemed to be responding very well to the vaccine. The researchers examined their tumors using a microarray analysis of their DNA and found that those with a gene expression profile identifying their cancers as mesenchymal responded better to the vaccine.

The finding was surprising, Liau said, because patients with the mesenchymal subtype generally have more aggressive disease and shorter survival times than those with the other subtypes. In patients with this type of glioblastoma, several genes that modulate the immune system are dysregulated, meaning they don't work properly. Liau speculates that the vaccine helped replenish the immune system, allowing that subset of patients to more easily fight the brain cancer.

"Glioblastoma remains one of the diseases for which there is no curative therapy ... and the prognosis for patients with primary malignant brain tumors remains dismal," the study states. "Our results suggest that the mesenchymal gene expression profile may identify an immunogenic sub-group of glioblastoma that may be more responsive to immune-based therapies."

Eight years of survival

Brad Silver, 41, who grew up in Southern California and now lives in a Cleveland suburb, was diagnosed with glioblastoma in 2003 and was told that he had, at best, two months to live. He was stunned.

"I was 33 years old, and my wife was seven months pregnant with my son," said Silver, a college water polo instructor. "I didn't think I was going to live to see my son born, let alone grow up."

Silver sought a second opinion at UCLA, and the golf-ball sized tumor in his left lateral lobe was removed. He underwent radiation and chemotherapy and enrolled in the vaccine clinical trial. Today, eight years later, he remains cancer free. His son, named Brad Silver II, will celebrate his eighth birthday in April.

"If I had listened to that first doctor, I would not be here today. If not for Dr. Liau, I would not be here today," Silver said. "I'm 100 percent back to being me because of this vaccine and that clinical trial. It's almost unbelievable."

This study was funded in part by the National Institutes of Health, the Philip R. and Kenneth A. Jonsson Foundation, the Neidorf Family Foundation, STOP Cancer, the Ben & Catherine Ivy Foundation and Northwest Biotherapeutics Inc.

UCLA's Jonsson Comprehensive Cancer Center has more than 240 researchers and clinicians engaged in disease research, prevention, detection, control, treatment and education. One of the nation's largest comprehensive cancer centers, the Jonsson Center is dedicated to promoting research and translating basic science into leading-edge clinical studies. In July 2010, the center was named among the top 10 cancer centers nationwide by U.S. News & World Report, a ranking it has held for 10 of the last 11 years.

Organic Bing Cherry Fundraiser

Hi friends! This is awkward. I feel weird even talking about this fundraiser, and yet I'm incredibly grateful for it. It's tricky. I'm uncomfortable talking about money, then it's double-y awkward discussing a fundraiser to help me pay for my medical treatments. The silver lining is that I'm not asking for your money. Actually, that's not true - I AM asking for your money, technically, but you get something in return! You get delicious fresh organic bing cherries at an incredibly low price. So there you go, if you love cherries like I do, it's a win-win situation. Unless you eat too many at once...

This Thursday, June 28th, from 11:00-1:00 pm my parents will be selling organic bing cherries at Emma Schmitz Memorial Overlook (also known as Mee-Kwa-Mooks Park) in West Seattle. Just look for the maroon dodge truck with the maroon trailer. You will probably notice the large ORGANIC sign (Thank you Oehlerich family at the Copy Shop in Ellensbug!). After that, they're headed to Friday Harbor. On Friday and Saturday they will be selling right in front of the Roche Harbor Grocery Store from 11:00-4:00 pm. The organic cherries are priced at $4.66/lb and they're packaged in 1.5 lb bags for $7.00 apiece.


Thursday
West Seattle
11:00 am - 1:00 pm
Emma Schmitz Memorial Overlook (Mee-Kwa-Mooks Park)
4503 Beach Dr Sw, Seattle, WA 98116


Click on the map for directions





Friday & Saturday

Roche Harbor

11:00 am - 4:00 pm

In front of Roche Harbor Grocery Store

(Just added the map for giggles...you islanders know where to go!)

The plan is to sell as many cherries as soon as possible. Way to state the obivious Jess, jeez. Anyway, if for some crazy reason we sell out we will close shop. Yep. I did it again. Obvious. Sorry, I'm just being awkward.

Thank you to anyone, in advance, for buying delicious cherries or for letting us set up shop. You are literally helping me stay alive and healthy. Both Danny and I, and of course my family, really appreciate it! I can not say enough how grateful I am.

Also, a massive thank you to Debbie Sandwith for letting us post up in front of the Roche Harbor Grocery Store this weekend!! Aaaaand, thank you to my buddy Libbey who connected us with the produce manager at Kings Market & Market Place for purchasing some fresh juicy organic bing cherries. So, whether you purchase your cherries out at Roche Harbor, or in town at Kings Market or Market Place you can feel great while satisfying your sweet tooth knowing that you've helped us tremendously.

Hood Canal

I'm so happy to be alive. Literally. I think about it all the time, several times a day. Life is so much fun, there's so much to do and experience. This weekend, Dan and I headed to our buddy Burke's cabin to do some clam digging, oyster shucking and mussel grilling. It was amazing! I'm so fortunate to do so many wonderful things. I might be fighting a serious cancer, but I'm also just a girl that wants to hang with her friends, BBQ seafood, play with her dog, and laugh hysterically. It rained a bit, then the sun came out. It was gorgeous. That's the thing about the northwest, the weather shifts often, and it's all beautiful. I love it here. 

On another note, my parents have been struggling to find a way to help me. Of course, I had no idea how terrified they are, or how helpless they sometimes feel. They're incredibly good at hiding their feelings, sheltering me from the worry. So, anyway, they got to thinking, and they figured that the biggest stressor in my life is money. I'm constantly having to avoid expensive treatments (like extra IVs), and I'm always weighing treatment options by cost. To try and alleviate the stress in my life, my parents are doing a fundraiser. They have purchased a truckload of organic cherries and they're going to be selling them in West Seattle this Thursday morning (the 28th), and then they're headed to the Green Lake area in the afternoon. Next, they'll be headed to Friday Harbor for the weekend.

I don't have all of the information, in fact, I don't even know what type of organic cherries they're selling, but I'll get all of the information and create a post soon. One thing that I DO know is that they're selling them for $4.99 a pound which is much cheaper than PCC (they sell them for $6.99/lb). It's a great deal, and it would be helping me fund my medical bills - including possible dendritic cell therapy - if we raise the money, I would have no reason not to get this amazing treatment. Anyway, just wanted to throw the basics out there. I'll put more information again soon. Hope you all had a wonderful weekend!

One more thing...how amazing are my parents? Pretty flipping amazing.

You're In My Heart

I have a sweet, sweet friend named Libbey who is going to kill me for calling her out on the blog, but I absolutely have to share because she's so kind. Libs was shopping in Friday Harbor at Daisy Bloom and happened upon this sweatshirt. She loved it so much, she bought one. But while she looked at it, and felt how soft it is, she thought to herself, "I think Jess would like this. I'm going to get her one. This way, whenever she's tired, or sad, she will be enveloped in softness, and when she sees the heart she'll be reminded of all the people that love her." Wow. So, here I am, absolutely drained, completely exhausted, worn down from the usual, and the effects of the afternoon IV, and I'm snuggled up in love. My body is warm, my heart is bursting, and I am ready to cuddle the snot out of my Mr Bingie cat. I don't know how I got so lucky to have such amazing friends. Seriously.

Photos Of The Day

Green Lake 

Fish That Remind Me Of My Brother Kaal

We're headed out to the hospital, but I needed to upload yesterday's photos. The bottom one reminds me of my brother whom I love so much. He can never make the MRIs since he lives back in Friday Harbor, but he's always with me in spirit.

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