Saturday, June 30, 2012

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 ingest the amounts that are necessary for killing doses like my friends did. We think that we're winning the fight, that the smaller amounts that I take might be holding Hermie at bay, or perhaps even reversing some of his growth, but the MRIs have not been definitive. In fact, my oncologists, and the radiologists, believe that Herman has continued to grow progressively. In order for me to be comfortable, I need to see more serious results.

At this point I take 29 pills in the morning, 24 pills in the afternoon, 48 pills in the early evening, 8 pills shortly after that, and finally before bed I take 6 pills. Most of them must be taken with whole milk so I'm tethered to a refrigerator. It's exhausting to keep up on the schedule, and I'm sick from swallowing all the pills - not to mention the fact that I feel like a cow. Literally. I find that on most days I don't even leave the house. The supplements may take years to heal me, and I need to keep on them in order to stay in front of Hermie's growth, to hold him back. It's a lot of work. If I go through with this clinical trial I might be able to aide my immune system to fight Hermie on my own. My body might be able to clean up the tumor, and heal itself. I could still take the majority of supplements, or all of them if I so chose, as my immune system also went to work. It would be an arsenal against Mr Herm. What's better than that?!?!

I'm scared to do another brain surgery, I think I've made that blatantly clear, yet I'm excited for the possibility of a personalized tumor vaccine. The freshest tumor has the best chance for success, so the surgery truly is necessary to be the most effective. Bad things can happen during surgery, I'm proof of that, and I'm actually very fortunate because I recovered from most of the ill effects of my brain surgeries. Some are not as lucky. But, this treatment could also heal me. It's a gamble, and we won't know if I'm a winner unless I go through with it and see what happens.

Thursday, June 28, 2012

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!

Wednesday, June 27, 2012

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!

Tuesday, June 26, 2012

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 radiation or chemotherapy is very exciting. The surgery is scary, but I will not make my decision until I know what I'm really looking at. I need to make sure that they would review a new MRI scan to make sure that my supplements haven't shrunk Hermie. Would the brain surgery be another awake crainiotomy? An awake is preferable since my tumor is so integrated. It's creepy to be awake while they're digging around in your brain, figuring out which is tumor and which is healthy brain tissue, but theoretically, it is supposed to ensure that they won't take very much (if any - which is impossible) of the good stuff. It's a pretty big deal. If they fail they can leave me severely impared. For the surgery, would they use the same incision location? What are the possible complications? Once the surgery has completed, how many dendritic cells are in each shot? They tend to do 1 million, 5 million or 10 million according to the other clinical trials by Dr. Liau, and I want the most dendritic cells possible. How many shots and over how long of a time period would I be recieving shots? What have been the results from Dr Liau's other clinical trials, including phase I of my possible trial? When they do the brain surgery, do they debulk the entire tumor or do they only take out what they need to create the vaccine? Would I have to shave my head again? How do they handle seizures if they occur during surgery?

I'm sure Dan and I will come up with a few other questions. If you think of any, please let me know. We can't have too much information when dealing with such a serious decision.

The wonderful thing about flying down to LA is that it keeps our options open. Just because we meet with Dr. Liau does not mean that we have to enter into the clinical trial.

If I do choose to participate in the clinical trial, I will have to cover the cost of travel, the brain surgery, hospital stay, tests, MRIs, blood work, perscriptions, etc. My insurance covers a portion of those costs (obviously not travel or any possible neccessary lodging), and yes, those costs are significant, BUT the dendritic cell therapy, which is the personalized vaccine to fight my specific brain tumor, is free!! Pretty cool!! This is a therapy that Danny and I were considering in Germany. We go back and forth, constantly balancing over the tightrope of, "Shall we spend the money on the treatment? It's incredibly expensive, but it does have great success..." If we can get the dendritic cell therapy for free, just paying for the standard care at the hospital, it will still be cheaper than going to Germany.

Now, all Danny and I need to do is figure out if the risk of another brain surgery is worth the benefit of the personal vaccine. The answer to that question is going to be revealed in time, once we have more information.

It's a great oportunity, regardless of whether or not we end up in the trial. It's just nice to have the door open, the option to be treated if I so choose. I feel nervous, yet empowered.

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 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! :)

Monday, June 25, 2012

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.

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 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.

Sunday, June 24, 2012

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 amazing are my parents? Pretty flipping amazing.

Thursday, June 21, 2012

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...

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.

Tuesday, June 19, 2012

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 I could be cured with a brain surgery and a few dendritic cell shots, heck, it sounds promising.

It costs $500 to be reviewed by the team at UCLA for the dendritic cell therapy, and in order to keep the door open, I decided to just go for it, and pay out of pocket. Luckily, this morning my mom reminded me that my insurance provides the right to get a second opinion from a new oncologist/surgeon etc. So, a few hours ago, I emailed my oncologist's nurse to get a referral to Dr Linda Liau at UCLA. I was hoping that this way my insurance would help cover a portion of the $500. Unexpectedly, my oncologist said that he wanted to read the clinical trial before he would refer me. What the hell! Are you serious? He should just refer me - it's my business. I feel like my oncologist always wants to be the one to make the decisions. I emailed his nurse back and told her the details of the trial and then gave her Dr Liau's email address. I told her that the Dr is very prompt, and that I would be contacting them again tomorrow.

It's my humble, uneducated, opinion that if I want a referral for ANY reason, my doctor should just refer me. Period. I mean, seriously, there's a chance that Dr Liau's team might reject me after reviewing my MRIs. I might not have enough tumor tissue, or my brain tumor might be too integrated into healthy tissue to safely resect. My oncologist has no right to delay my progress. This is not his clinical trial, he needs to step back. He'd better not get in my's making me fact, I'm mentally toilet papering his house as we speak! No one, no thing, is going to get in the way of my healing.

I still don't know if I even want to do the trial, but at least, I want the option to be accepted. Why close a door on any treatment? I think it would be foolish of me.

Sunday, June 17, 2012

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, blood tests, etc. Whatever the cost, it should still be cheaper than going to Germany, and with the fresh tumor tissue the treatment would be more effective. I double checked and since this is a phase IIa clinical trial, there will be no control group, no placebo, all patients would receive treatment, a dendritic cell vaccine personally created with their own tumor tissue. This is HUGE!! I still don't know if I'll get accepted into the clinical trial, but I'm very hopeful. Instead of heading to Germany, I might be headed to LA. Either way, we're headed somewhere, whether it be Germany or LA, something is happening.

I had been reading about the clinical trials in the USA, there's one currently being conducted at Swedish, here in Seattle, but it's for glioblastomas. I knew that Dr Liau was conducting a clinical trial at UCLA for low grade gliomas, but foolishly, I had assumed that I would have to do radiation or chemotherapy first, and I assumed that there would be a control group with placebos. This is fantastic, and exciting. The only reason I contacted Dr Liau is because my friend Jessica, who is also fighting a glioma, emailed me with correspondence. I figured I might as well email the good doctor in charge. I'm always interested in getting my questions answered, and thank goodness I did. I could have missed out on an amazing opportunity. Of course, I have not been accepted into the trial yet, but I'm hopeful. And if it doesn't work out, then, well, I'll just head to Germany. I have wonderful sulforaphane pills, curcumin, and all sorts of fantastic things that on their own could cure me in their own right, but truth is, Dan and I feel like we should attack everything from all directions....because....why not?!? Let's do this. Anyone interested in another head shaving........

Thursday, June 14, 2012

Innately Healthy

I saw the most random sight today, my happy little turtles were hanging out with a heron. Pretty cute! I'm lucky to have such an amazing wildlife refuge right here in the city. It keeps me connected to the freshness of nature.

I took today off of my IV treatments. It's just so much money, and it exhausts me. So, instead, I started doing laundry, and fiddled around the house. I even went for a jog along green lake, stopping at a bench to rest and enjoy the outdoors. That's a first. Usually, I run from doorstep to doorstep. I always enjoy the view, but I never take the time to just sit. Just breathe. Just live.

I've been wondering lately, if maybe I'm in denial. Although I do a crazy amount of research, take a lot of pills, and focus so much on treating myself, I have to admit that in my heart of hearts I don't feel sick. I feel alive, and believe that my exhaustion is due to my treatments, not from my innate body.

Sometimes I wonder if I'm already cured. Is that weird? Is there a way that I'm supposed to handle a situation like this? How do you handle a silent monster growing in your brain?

Tuesday, June 12, 2012

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.

The Trick About Treatments

Hi Friends,

Good morning. Although I didn't sleep well, tossing and turning, trying not to vomit, I feel refreshed and excited to start the day. It's all because I have such wonderful friends who help me research my protocols, awesome neighbors who print up research for me and take me to my IV clinic, genius brain tumor fighters who help contact experts for more information, and my loving parents who find the best German clinics. I feel so connected, fighting amongst warriors who are battling by my side.

This morning, when I woke at 5:00 am, I was frustrated and exhausted. I'm only at 1,500 mg of the homemade sulforaphane pills and I'm barely keeping it down. The target dose is double that. I'm worried that I'm not getting enough to pack a wallop against Hermie. Dan keeps telling me that I'm doing the best that I can, and that I can only do so much. If I throw up it will ruin everything. I just don't know how I'm going to get the dose up. I always thought that I had a steel stomach, but now I realize that I'm nothing compared to my buddy who killed her astrocytoma. She is a crazy, amazing, insane warrior.

It makes me wonder, more and more, if I should seriously consider the dendritic cell therapy in Germany. It's expensive, and logistically tricky, but if I had endless funds I would absolutely hop on a plane and make it happen. The only reason that I haven't already started the treatment is because I'm trying to beat Hermie with more affordable tactics. The sulforaphane works, it has been proven by my friends, but dear God it is incredibly tough on your body. The plan has been for me to get up to the target dose of 3,000 mg per evening, and then sustain that for two months, then get an MRI to check results. If somehow Hermie continues to grow, we would adjust the protocol, and probably head on a plane and add dendritic cell therapy and hyperthermia to my treatment plan. Dendritic cell therapy is incredibly effective for brain cancer, and since I found the tumor specimen from my brain surgery, I know that they can target the vaccine to my specific cancer DNA.

The whole thing is tricky. I'm not sure how long I can go without sleep, and still keep healthy. Without sleep, constantly fighting painful intestines and discomfort, a person might go crazy. It's not much of a quality of life. Very tricky. But......not to works. It comes down to one simple fact, "What are you willing to put up with to save your life?" Well, actually, it's not that simple, it's not just what would you do to save your life, it's also, "What are you willing to do to try and save money?" You don't want to go into debt $100,000 if you don't have to. If we were loaded, and $100,000 was just a drop in the bucket, I wouldn't worry about it. But since we don't have that kind of money, we have to be smart about the treatments that we choose. It's sad that tons of people die of cancer every single day because they can't afford the best treatments. It's sad, but it's just a ruthless fact.

When you have cancer you're playing a tightrope of deciding when to do the right treatments, can you push out the expensive options? If you push it too long you might die. You're constantly evaluating the risks (death), and benefits (saving money).

And, for the record, this past weekend I did get to do something fun! A group of girlfriends headed to Lake Chelan for a girl trip. It was very low key. The weather was cool, which was perfect for the hot tub. It was nice to get out of town. After vomiting (and such) on Thursday night, I took two nights off from the sulforaphane pills. It was glorious. It's fun to be one of the girls, goofing around, talking girl talk. I enjoyed pretending that things aren't so difficult. I loved not having to plan my days around pills & breakfast, pills & research, run around the lake, pills & lunch, pills, research & pills, pills, pills, pills, nausea & pain & fitful sleep. It's important to have some time to just be. Just exist.

Monday, June 11, 2012

Just The Facts

Sorry I've been MIA (I love you SoCal - I'll call soon!). Between the IVs, the homemade sulforaphane pills 6-8 times a day, researching the top experts on high dose IVs and dendritic cell therapy clinics, trying to keep up with exercise, corresponding with clinicians, and experts - like my friends who have beaten their brain cancer, etc., my head ends up spinning, and by the end of the day I fall into bed late at night, exhausted. Some days, like Thursday, I'll lose the fight with discomfort after hours of restless sleep, run to the bathroom and lose the homemade sulforaphane pills from both orifices. Yep, I know, it's disgusting, but sometimes it happens. The amount of pills that I'm ingesting, are very tough on my body.

I have a lot to say, and wish I had the energy and time to do a post every day, but I keep finding myself needing to research my current protocols to verify that I'm getting the proper treatment. I have to double check the reputations of my doctors, and the validity of their recommendations. I don't trust other people to have my best interest at heart - medical professionals anyway. I've been burned already, and I have to make sure that I'm getting the treatments that I'm paying for. Long story.

I am completely overwhelmed trying to verify things that I'm using in my protocol. For example, there is an internet article stating that high dose vitamin C can spread astrocytomas. I can't find the research to back it up though. In fact, I've found a researcher from Kansas University Medical Center who seems to be the leading expert on the subject and has the complete opposite opinion - with facts to back it up. She uses high dose vitamin C on all of her cancer patients, even when they're going through chemo or radiation. She has the research and facts to prove that it causes hydrogen peroxide, a pro-oxidant as apposed to an antioxidant which occurs in a low dose of vitamin C. Hydrogen peroxide in the brain alkalizes the tissues making the environment inhospitable - cancer hates oxygen, that's why exercise, meditation, and deep breathing are so beneficial). Anyway, everything is incredibly complicated, and I've learned quite a lot, but I still have so much to learn. The more that I find, the more that I have to research. For example, it's not good enough to just take 75 grams of high dose vitamin C, you also have to figure out what's being mixed in the solution, you need to know how long it takes to administer (you want it to take a certain amount of time, the faster it goes in the higher the dose it becomes or something like that - it's all about the number of drips per second). Anyway, it's incredibly over my head and I need to figure it out to make sure that I'm following the protocol that Dr Drisko uses. She's the KU genius curing cancers with this stuff. I want what the genius recommends. Duh :)

As for my curcumin IV, according to some friends who understand how to calculate body weight, and the amount in my IV bag, my brain is only getting 1 micromole. For this therapy to be effective I need to be getting much more than that, like ideally, 25 micromoles. So, now I need to talk to my doctor and see what the deal is. Are they trying to administer enough to get a good kill rate (as in, killing the cancer)? Are they being scientific or are they going by trial and error. It's frustrating. I have to double check all of their work. Sorry if I sound like a brat. I don't want to be a brat. I don't want to be difficult, and truthfully, I'm always nice to the doctors, but behind their backs I get exhausted and frustrated. I realize that they're all human and that they're doing what they think is best, but the problem is that they don't seem to be following proven science. They're going more by intuition, which I realize has a place in medicine, but I need facts. I want to copy people who have already beaten their cancer. If it takes 25 micromoles to effectively kill astrocytomas in my brain, I want 25 micromoles. It would be horrible if I was paying an arm and a leg, and then my knees and teeth, thinking that my treatment is killing little Hermie, when actually he is thriving. We have to be relentless about every aspect of these treatments, and research the crap out of them.

On a much more fun note, check out the card that my blog buddy Ann sent. Totally awesome!! Thank you Ann, for the card, thank you for purchasing Hope, and for giving ME hope. I appreciate it so very much!!

Fighting cancer is incredibly exhausting, mentally, emotionally, physically and spiritually. Although I'm pretty pooped, I believe that the energy that I'm expending is giving me great results. I have to pick between various things, it's a balance, because I can't do everything. I can't accomplish it all, but I know I'm headed in the right direction.

Tuesday, June 5, 2012

No More Volunteering

Well, I did it. After another night of fitful bouts of jactitation, with less than enough sleep, I trudged through the pouring rain to resign my post as volunteer at the retirement home. I realized finally, after fighting it, that I need to focus on various pills that I take 8 times a day, extra sleep, the 2 hour bus/running commute each direction to each doctor appointment, and all of the other crazy things in our lives. I need to rest. I need to focus on taking these acidic homemade sulforaphane pills, which kill cancer but also my sleep.

Although I was taking a leave, I still went to Margaret's room for one final manicure. I feel like I'm letting her and everyone else down. They look forward to getting, and deserve to be, pampered, and it breaks my heart that I can't give that to them. While I was massaging her hands, Margaret reminded me that she had beaten cancer three times; renal, melanoma, and breast cancers. She's now 101, 102 in November. I thought she was 103, but she corrected me. Either way, she's an adorably colorful, broach wearing, mascara blinking, enhanced eyebrow sporting firecracker. I just love her. I love them all. After talking to the wonderful employees at the Hearthstone, the deal is that I can stop by any time.

I'm not going to lie, I cried three different times during my time at the Hearthstone this morning. I just love seeing everyone, the residents and the employees. They are always laughing, and joking. I'm just going to keep reminding myself that this is only temporary.

Final thought of the day, on my walk to volunteer this morning, I saw the most amazing little outfit. At first I noticed the ladybug umbrella, but as I drew near I saw that she was wearing her undies over her leggings. Awesome. I love her spunk! What a great mother to encourage her independence. I love it!

Monday, June 4, 2012

Synergising Treatments

How awesome is my friend Sara? She's THAT awesome! Remember my self promoting t-shirt from my very first race? How embarrassing. You guys are so nice to put up with me! Thank you for cheering me back to normal; for sending me ass-kicking energy. Thank you!! I have such a killer pun intended. I can not wait for the big wake for Hermie, a massive party when we can dance and get goofy. There WILL be a day when the cancer is gone. He just doesn't know who he is messing with, not just me, but my rallying troops. We are a force!

In a few minutes I'm headed for my 1.5 mile run to the bus stop, then a 40 minute bus ride to get my high dose vitamin C IV. I have a new system, it's important to hone my schedule of pills, making each dose work with the other supplements or IVs so that they're working synergistically, multiplying the effectiveness. On IV days, I take 10 bioavailable curcumin & 6 piperine, then thirty minutes later, I take 18 homemade sulforaphane pills. One hour after that I am hooked up to my IV. I'm out of my high dose sprout smoothie (gotta wait until my parents grow some more), but when I have more of that, I'll add that in to the mix. The isothiocyanates work with the IV's, especially the curcumin and resveratrol. This whole protocol is intricate and takes serious scheduling - but it's incredibly exciting! 

I have to focus on increasing the efficacy of the IVs, that's why I'm working my supplements around the IV days. At this point, the IVs are $735 per week, and the chemo drink - which we're rolling into pills - cost $40 per drink. So, just with these two treatments, we're pushing $1015 per week. Fighting cancer the natural way is incredibly expensive, but it's effective. Every treatment that we're exhausting has been proven through scientific experiments. They all fight brain cancer or I wouldn't be doing it. The creme de la creme, though, in alternative treatments for brain cancer is dendritic cell therapy which costs, when completed (all three rounds), around $45,000 and lasts for about 14 months. We're meeting with my doctor on Wednesday after my last IV for the day, to get more information. They take some tissue from my tumor specimen (I called around to various departments at the UW last week and found my tumor,  a complete miracle since my surgery was over two years ago), and they create a personal vaccine. Pretty impressive stuff which has about a 50% success rate, and can be combined with all of my current treatments and supplements. 

The expense of all these supplements, IVs, and treatments are obviously mind-boggling, but if we're smart, we will only include the most effective choices and they should work together to get me healthy. I keep hearing from friends, and family, that money should not be a reason to avoid a treatment. Get the treatment and then money will come later. Danny and I figure that we will be paying off my medical bills, happily, well into our golden years. The expense of treatments used to completely freak me out, but lately I don't care as much. I need to get healthy, and once Hermie has left the building, I will write my monthly checks for payment with a big glossy smile. The money thing IS scary, let's face it. Money is important in order to afford life's necessities, and then above that, it's important in order to have luxuries like children. But, Danny and I realize that as long as we're healthy and alive, we will be happy under any circumstance, as long as we're together. 

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