Monthly Archives

June 2012

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To Knife or Not To Knife

Yesterday, I walked a couple of loops around Green Lake with my friend Lauren. On the way to meet her (she lives in Green Lake like me so we meet half way), I saw this gorgeous dahlia. I mean, I think it’s a dahlia. It was misting, and every plant had mother nature’s glitter. It was a beautiful morning, a great day to be alive, to be healthy, to be able to walk and explore and laugh and talk. The possibility of another brain surgery reminds me of all the trials I worked through before. The first two brain surgeries were incredibly hard on me, and the recovery for months and months and months were horribly trying. But, I got through it. At times I didn’t know if I’d get better. I didn’t know if I would ever get my speech back together, find the words that I wanted to communicate with, my phonetics and word finding were in pieces. I didn’t know if I would ever read again, or once I was able to slowly read aloud, like a child just beginning, I didn’t know if I would ever be able to understand those words. Any fears I might have about undergoing another brain surgery are definitely founded, but it still shouldn’t hinder me from moving forward with a successful treatment. I used this analogy with a friend yesterday when she was picking up her cherries (thank you!), I want to hit Herman with a firing range. I want an arsenal to beat this tumor, hit him from all angles, give him no reprieve. Technically, according to the research, it’s possible to cure my type of tumor in rats with various high dose supplements, and of course, our friends have already stopped theirs. But, I haven’t been able to…

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Thank You!

My parents swung by our place at Green Lake a few hours ago, and they were beaming! They were blown away by the generosity. People not only bought cherries, but also donated. Above the money that they raised in West Seattle, they were moved deeply by all of the hugs and kisses they were given. If you haven’t met my parents, they’re incredibly loving and affectionate. I grew up with hugs and kisses all the time, especially before bed. My parents are loving and kind, ridiculous and funny, thoughtful and generous. I appreciate everyone giving them so much love and for making this fundraiser such a wonderful success! So thank you everyone, not only for purchasing cherries or for the donations, but also for giving them so much love!! Since I’m just their child at the epicenter of the cancer without of the privilege of understanding what it means to be a parent, I can not imagine what they’re going through. So, thank you! Thank you so much!! We had no idea how much love we would be given, it’s been a beautiful example of love and human kindness. Thank you! To thank you for buying cherries and donating, AND for hugging my parents and giving them kiss after kiss, I am drinking two pints of my disgusting sprout drink. I figure that, if you guys can support me emotionally and financially, I can give all of my energy to my health, even when it’s incredibly tough. Truthfully, I wish you could smell how horrible this drink is, it’s created from benzyl and phenyl sprouts. Misery loves company! 

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Cherry Changes

EEEK. Ok, problems with weather (rain) in Wenatchee has changed the game on us. Here’s what we’re looking at…we now have two different types of cherries. We will have organic rainier cherries and non-organic bing cherries. As you might expect, there are two different prices. The organic rainier cherries are $9.00 for a 1.25 lb bag. The non-organic bing cherries are $7.00 per 1.5 lb bag. To put it bluntly: Organic Rainier Cherries$9.00 per 1.25 lb bag Non-organic Bing Cherries$7.00 per 1.5 lb bag I’m so sorry for the changes!

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I’m Headed to UCLA!

Yesterday my medical files were sent to UCLA (at least the writen ones – the MRI scans are somwhere between Seattle and LA on a USPS truck I imagine), and this morning I missed a call from Dr Linda Liau’s office. I thought they were calling because I had yet to pay the $500 to get my records reviewed for the low grade glioma clinical trial with dendritic cell therapy, but when I finally got ahold of the department it turns out they were wanting to schedule an appointment for first thing Tuesday morning. Em, like THIS Tuesday, July 2nd. Dr Liau only holds office appointments on one day a week, so an appointment at 8:00 am this Tuesday is the soonest appointment available. Since I’m traveling from out of state, I asked for a later appointment, and was able to push it back ’til 10:00 am. The stress alone from traveling is going to be tremendous, and I haven’t been sleeping well anyway – I need to rest whenever I can. Also, interestingly, they told me that they wanted to schedule me in for immediate brain surgery for either Wednesday or Thursday. I started giggling and said, “Oh my god, I’m panicking. I’m not ready!!” The nice girl responded, “Oh, no problem, no pressure! For out of town, or out of state patients, we try and schedule surgeries immediately so that they don’t have to endure any extra expense or stress. But, just so you know this isn’t a rush.” So, on Tuesday at 10:00 am I will sitting in Dr Linda Liau’s office at UCLA, in the neurosurgery department. We will discuss the various details of the clinical trial and Danny and I will review the risks and benefits of another brain surgery. The idea of getting dendritic cell therapy here in the United States with fresh brain tumor and no forced…

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North Seattle Cherry Sales

Thank you Kelly for the awesome idea! New plan…after my parents finish selling cherries at Emma Schmitz Memorial Overlook Park in West Seattle from 11:00 am – 1:00 pm, they will drop off any pre-sold bags to my house in Green Lake for our North Seattle friends. You can pick them up Thursday evening (actually, any time after 3:00 pm), or anytime Friday throughout the day or evening. The cherries are $4.66/lb and the bags are 1.5 lbs each but we rounded up the penny for a final price of $7.00. So, if you’re interested, please email me jessoldwyn@hotmail.com and we can set up a time for you to pick up the goodies whenever you’re available. Otherwise, if you’re up in the San Juan Islands, you can pick up cherries in front of the Roche Harbor Grocery Store on Friday or Saturday from 11:00 am – 4:00 pm. On another note, the photo below, and all of the other cherry shots on the blog have been “borrowed” from the internet. Our cherries are just now starting to be picked. Talk about fresh! 🙂

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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. ThursdayWest Seattle11:00 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…

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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…

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Green Lake Gump

Great news. It looks like my oncologist’s nurse is going to send over the necessary medical records to UCLA next week for application into the clinical trial. Wooo hoo! Somehow I feel like I’ll need to follow up on that, but that’s fine. As long as it gets done. On another note, I would like to share an amazing herb that fights malignant gliomas (and ulcerative colitis, inflammatory bowel disease, asthma, arthritic, crohn’s disease, breast cancer, and leukemia). I probably sound like a crazy advertisement, but I love sharing things that help! It’s incredibly exciting because it’s non-toxic, even in crazy high doses like 1,000 mg/kg. I’ve even found a study where rats were implanted with gliomas, then they fed them the boswellic acid at 120 mg/kg three times a day at eight hour increments. By day 14 the glioma had shrunk by 60%. SERIOUSLY. This boswellic acid lowers inflammation which is the environment that cancers thrive in. It’s amazing! I’m very hopeful that I can get the same results. Here are a few links for my brain tumor fighters… Boswellic acids and malignant glioma: induction of apoptosis but no modulation of drug sensitivity. Boswellic acids inhibit glioma growth: a new treatment option?   The best part about the whole thing is that the company that makes the best quality is just a mile and a half from my house. I just jogged over there to pick up another bottle. AWESOME. This little Green Lake Gump runs all over her neighborhood to literally run her errands. It’s so much fun. Choosing to avoid driving (by now it’s legal for me to drive again after my seizure) has forced me to get out, get sweaty, get stinky, and gain perspective. I feel empowered.

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Keeping The Door Open

I’ve been researching, trying to decide whether or not I want to pursue this clinical trial. Can I handle another brain surgery? Danny would kill me if he knew I told, but tears started running down his face at the idea. He remembers how much pain I was in, and it took months and months for it to subside. I had so many complications, and now I’ve had a massive seizure and a few auras, albeit it was almost a year ago. Brain surgery is not a simple procedure, and the brain is a delicate beast. Also, my type of brain tumor is not like the others – most have clearly defined borders, mine is diffuse, it’s infiltrated, it’s intertwined with healthy brain tissue, it’s messy, complicated, and dangerous. With a brain surgery, I could die – anyone in my position could. Due to the location of my tumor, I could become paralyzed. I could lose the ability to process speech. Is it worth it? Here’s a video with Dr Linda Liau the neurosurgeon at UCLA who is conducting my prospective clinical trial. This dendritic cell therapy is the most effective and promising treatment to ever exist for brain cancer patients. It’s a pretty big deal. This dendritic cell therapy treatment could cure me. That concept is very appealing. According to the research that we’ve conducted, there are several supplements that could also cure me, however it’s exhausting trying to juggle the various combinations, playing trial and error until we get the results we want. I’m just getting started with the supplements, I’m taking a gazillion pills each day, and the dosing is all dependent upon my previous pill set since they’re time dependent. I constantly have to keep on my game, up on my schedule, and it’s exhausting. If…

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Clinical Trial?!?

A random artichoke plant along the road off Green Lake. Beautiful! I have big news, but I have to start at the beginning……. I’ve been exhausted trying to navigate supplements, treatments, etc. It has gotten so bad that I haven’t been sleeping well, and I’m constantly tired. After my most recent IV treatment, Danny and I realized that if we’re going to fight to get healthy, we need to exercise every avenue. And yet, we don’t have unlimited funds, so we have to be smart about the treatment choices. Instead of paying for IV treatments, which are good, we need to head for the hills for something great. So…….I contacted Dr Germany’s clinic in Duderstadt. I’ve been gathering information about the various treatments available, including dendritic cell therapy, immunotherapy, and hyperthermia – all three treatments are very effective against brain cancer, especially when used in combination. After talking with Dr M, at the clinic, Danny and I were all in – incredibly excited and hopeful. We vetted the clinic and with no ill information around, we were convinced. We even started talks with family friends about acquiring personal private loans to help cover the costs. As you can probably read, things changed. There’s nothing wrong with Dr Germany’s clinic, in fact we may still end up heading there, but guess what…..this is huge…..I might be accepted into a clinical trial. Let me tell you about it….. There is a clinical trial at UCLA for low grade gliomas using dendritic cell therapy, headed by Dr Linda Liau. I would need to get another brain surgery to harvest more tumor tissue, it’s important to use the most fresh tissue available. I would not have to do radiation or chemotherapy. The only cost would be whatever my insurance would not cover from the brain surgery, MRIs,…

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