Tuesday, May 29, 2012

Love, True Love

My girlfriend Meghan just emailed this photo to both Danny and I. How fun! I had never seen it before. I can't believe how short my hair was, and how far I've come. I'm so fortunate to have such a wonderful man who loves me so deeply. I'm incredibly grateful to have such wonderful friends, and an amazing family. I am not defeated.

Last Thursday was a turning point for me. I had breakfast with Jude, and Seanene, and after I jogged home, I called So Cal Patti. I had been living on a 25% belief that I could beat my cancer, but then, throughout the day, something shifted. When he came home from work, I told Danny I was at a solid 75% which is great news because I had been tearful at the drop of a hat before Thursday. And, I'm incredibly happy to report that after this past weekend, I realized I'm back at 100% again - just like the old days. I can't explain it, it's just a gut feeling. That's not to say that I'm not fearful for my journey, but I'm more excited about the future success of my treatments.

Somehow I realized, truly absorbed the notion, that I am incredibly healthy. That no one would ever expect me to be ill. That I'm shockingly healthy, and capable, and fortunate. I have been surrounded by a loving and selfless man who continuously makes me laugh uncontrollably, and I have mounds of friends who endlessly hug me, and give me their love, constantly filling up my soul. I have family who will stop at nothing to help me beat this. I have new friends who have found me from this blog, and continue to support and love me even though they have their own challenges in their lives. I am alive, I am thriving, I am quite possibly the luckiest girl in the world.

I want to say that "cancer" is just a word, but that would downplay the reality. Cancer is serious, it's scary, terrifying actually, but life is full of beautiful relationships, of love, laughter, and kindness. Somehow, I no longer really feel like I have "cancer". I feel like I am a whole person, completely healthy, incredibly capable, and that my choice to do this chemo drink, to take all of my supplements, to exercise, to partake in the IV treatments, and to practice my deep breathing, are all to keep me healthy. I feel like I'm more in the maintenance phase than a deeply stressful fight to save my life. It's an amazing evolution, one that was necessary for my survival. People can not function in survival mode for long, not without enduring serious consequences.

Chemo Concoction

Danny and I took off for the Memorial Day weekend. We packed up Emma and Bingie; Emma in her crate in the back of the truck, and Bingie wandering the cab, finally settling onto my lap. We braved the crazy traffic, and headed east over the mountains. My parents gave us their house so that we could get out of town, knowing that we need a kitchen in order to function with our crazy chemo phase. It was so much fun getting away from the routine of our life. We needed a break, a change of pace, a different view, new scenery, and a mild adventure. 

Above are photos of the chemo process. On Saturday night, Danny and I made two batches. These new little gadgets are making things so easy! After the drink had cooked for three hours at 100 degrees, I hunkered down. It took me an hour to ingest an entire glass, five large sips every 20 minutes, which is pretty typical. I can't drink it fast or it causes almost instant projectile vomiting. After my last sip, I was able to hold the drink down for one hour, then, after gently pacing, and doing some deep breathing, I had a wave of nausea so severe that there was nothing I could do. Neither my desire nor thinking of warm beaches, butterflies and bunnies did it either, I went to say something and vomit shot out of my mouth. It was seriously like something you'd see in a horror movie. The worst part about vomiting, other than the fact that I need my body to absorb the sulforaphane, is that one drink costs about $40. So, it's practically liquid gold. I don't care about the cost, as long as it gets into my body. I'd pay anything to heal myself, but if the money is going down the drain, quite literally, it's frustrating.

Danny cleaned up all of the mess, which was incredibly sweet. I wish that there was something I could do - I feel like I'm literally allergic to this stuff. The worst part is that this chemo drink that we created on Saturday night was half the dose of the normal drink. I honestly don't think I can drink it, not even a little bit. It always causes me to be sick.

Fortunately, there's a way to slow cook the drink, and as it dries up, you can roll the film into pills. Since we recognized my issue with the chemo drink in the past, as a precaution, we had already enlisted my parent's help in creating chemo pills. So, thankfully, when we saw my parents, after the long weekend, they handed me a bag of their homemade pills. Not wanting to waste any time, last night, I started with five pills which is 245.5 mg. I'm starting slow, trying to find my tolerance. Five pills caused heartburn, and some discomfort, but that's fine - no big deal. I can handle pain, and discomfort. In fact, I can handle all of the horrible side effects, but somehow I can't manage to keep it down for good. There has to be a point, though, the threshold where I can get the maximum effect and not vomit. The way that my body rids itself of the chemo drink is shocking. It's like I'm possessed - it's unreal. I just need to keep this stuff in my system long enough to get the effects. And happily, at least now, I have a few pills to slowly assess things. The pills are lot of work, but with my parents and Danny and I, all working like two sweatshop factories, we should be able to keep a good amount in production. I have to do whatever I can to heal my body. This treatment works, we already know that, but, first things first, I have to find a way to keep it in my system.

Tuesday, May 22, 2012

Hard Work & Healthy Distractions

Danny is going to kill me. I was supposed to tell my friends at the retirement home that I need to take a couple of weeks off from volunteering. Dan's worried that I'm overdoing it, and he wants me to focus on getting healthy. He believes that I need to focus solely on my new protocol, but while I was painting Margaret, Elizabeth, and Ruth's nails, I realized I just can't walk away. These wonderful women are so fun to be around. They keep me laughing, or at other times, we're just quiet. Volunteering feels like the only time that I'm not focusing on just me. It's wonderful helping someone with their walker, or opening a door. I love serving them juice, or painting their nails. They give me a reason to get out of the house every Tuesday morning, whether it's sunny or pouring rain. I'm afraid, that if I can't volunteer, I'll get depressed. I'm pretty terrified these days, and I need distractions. I need to help others. I need my life to not be just about me.

Yesterday was my first high dose vitamin C treatment. On Thursday, I'll return for IV curcumin and resveratrol. I'm going to be alternating those two IVs twice a week for quite some time. Unfortunately, the treatments are not covered by insurance. So, thank you to everyone who has donated money to help heal me! Thank you to Matt & AJ for Movember For Jess, and to those who have donated to the Islanders Bank account in Friday Harbor. Of course, thank you for the girls who created, and maintained the Hope for Jess website of my art work. Thank you to everyone who donated to any of the above fundraisers. You guys are AWESOME!! When it comes to medical care, hospitals are wonderful about payment plans, if need be, but when it comes to "alternative" medicine, you have to pay upfront. So, the money that has been donated to me in the past, has been incredibly helpful. I've used some to pay current medical bills, but then I got smart, and realized I needed to bank the donations for any kind of uncovered care. Because of your amazing donations, I'm getting full body, synergistic care that is not only healing my body, but also, directly targeting my cancer cells with a barrage of weapons. So, truly, thank you from the bottom of my heart!

Apparently, the high dose vitamin C, curcumin, and resveratrol IVs are synergistic with my low doses of artemisinin. They should all work together, along with my diet and supplements which have grown exponentially (shark liver oil, borage seed oil, fish oil, maitake, shiitake, lions mane, aloe vera jelly, boswellia, CoQ10, EGCG, D3 - I'm probably forgetting a couple) - and last but not least, it should all work with the sulforaphane chemo drink. I haven't been able to get started on the chemo drink, yet, unfortunately. I've ordered a yogurt maker, which should cook my chemo drink at exactly 100-110 degrees for several hours. It even has little cups, that sit on a tray. I'm pretty excited about it - the little cups on the tray will make it so that I can do a week's worth of drinks in one batch. Woop woop!! The shipment should arrive by the end of the week. Once that arrives, Hermie is going to FREAK. I'm pumped!!

Well.....I, mean, I'm pumped, and completely terrified. It's tough to keep my chin up and plow through everything, but I know that giving up would be ridiculous. I need to stay calm, ignore statistics about my cancer and effectiveness of the various treatments (30% success rate for one, 20% for another, etc.). I have to believe that these things that I'm doing are going to work together and heal my body. To put this much effort into living is risky because I would hate to be disappointed, but, of course, that's a horrible attitude to have. It's just not acceptable. That's not a winner's attitude. Maybe I need to do more deep breathing or something. Part of it could be that I feel disjointed from Hermie lately, I can't quite tell what's happening up there. I worry that he's morphing, which does tend to happen. Cancer cells don't like to die, and when they come into contact with things that threaten their livelihood, they like to adjust, change their dynamics and progress, so that the treatments are rendered ineffective. To outsmart the Hermies of this world, we have to keep the full frontal attack. It's exhausting, but it's the only way to win.

Monday, May 21, 2012

Navigating, Always Navigating

On Friday, I was walking between doctor appointments and passed a bush of wild-ish roses. The smell was intoxicating. I find that since I don't drive, I notice so many beautiful things each day, things that I wouldn't have noticed if I was whizzing by in my car. It's a much slower pace of life, and it's a gift. 

I'm completely overwhelmed lately. I have a wonderful new primary care doctor, and a fabulous naturopath, but I'm still reeling from all of the information and reality of my new treatments. Suddenly, my cancer seems painfully undeniable. I've been galevanting around Green Lake, taking care of myself with the low doses of artemisinin and diet, and I thought that I was really fighting Herman, but compared to the other cancer patients that I'm meeting, there's so much more that I could do. That I have to do, and, all of a sudden I feel catipulted into the cancer world. Before, I realize, I had one foot in and one foot out.

There are so many treatment options, and I need to exhaust them all, all at the same time. In about an hour I'll jog to a bus stop. By jogging a couple of miles, I'll avoid having to take two more busses. I'll head to my naturopath's office to start the first high dose vitamin C IV. On Friday they had to draw blood to make sure that my body could handle all the things that they'll be injecting. I'm currently downing an intense sprout smoothie which should work synergistically with the IV treatment. It's all about timing and combining, so I'm adding various things to increase the effectiveness. It's enough to make a person crazy.

I've just finished ordering some various equipment to create our amazing chemo drink, and now I'm just trying to figure out what to do next. We have to start growing a sprout farm, literally, in our house because it takes several trays to create just one morning drink, and I'm supposed to drink it every day. And that's just the sprout drink, in the evening it's time for the chemo drink. Between those two creations, I'll be going back and fourth with the IVs (curcumin, vitamin C, resveratrol), supplements, and possibly the artemisinin (it should be synergistic according to my naturopath). Oh ya, and the fun part, I need to get a port surgically implanted into my chest for all of the IV treatments.

I'm trying to be cool, but I don't even know how to organize all of my treatments, the growing of the sprouts, the ordering of pills, the busses to treatments, the management of our household, aaaaaaaahhhhh, I'm going to spontaneously combust before I've even begun. 

Thursday, May 17, 2012

Poor Little Hermie

Jules and I walked the lake last night. I'm so lucky to have all these girls (Erin, Meagan, Meghan & Jules) that take different shifts to help keep me in the game :)

Today, I'm headed to a new internist appointment, trying to find a better go-to doctor for all over health. Then, this afternoon, I'm headed for my first high dose IV of vitamin C! Lets hope they can find my vein easily!!! I'm excited and nervous. I'm seriously traversing the metro today...can't wait for my new adventures.

As for the vitamin C, if you try and ingest it, your body excretes most of it, to get the massive levels, you have to get it injected. By injecting it, you bypass the stomach, the lower intestine, and liver, and the vitamin goes directly into your blood stream allowing it to travel all throughout your body. So, the IV helps bioavailability. This whole treatment is amazing. It's a great addition to any radiation, or chemotherapy. Vitamin C is a molecule off of glucose, which is what cancer and tumors live off. So, the tumors suck up the vitamin C, thinking it's delicious sugar, but in truth it's an antioxidant. In the high doses, vitamin C generates large amounts of hydrogen peroxide which is a potent free radical. A normal cell has catalase to neutralize the free radicals and protect them, but cancers DON'T. So, the high levels of vitamin C weaken the cancer cells. Also, the hydrogen peroxide aids in the artemisinin. That's why I'm supposed to walk for two hours before I take my pills every night, exercise and deep breathing help oxygenate my brain generating more hydrogen peroxide. So, literally, today with my IV, and my walking, and then the artemisinin, poor little Hermie is going to get quite a beating. It's exciting, and yet somehow I feel a little bad for him. He's done so much for me, allowed me to learn so much, but I guess I can just remember him fondly and take his lessons with me wherever I go. I guess, that's a nice compromise.

Hope all that vitamin C stuff makes sense, I'm in a bit of a hurry. If it's confusing, I can explain more later!

Wednesday, May 16, 2012

Armouring UP

This photo makes me laugh. I was trying to hand over my phone to Danny so that he could take a photo of Mount Rainier. It sums up my life at this point, completely sideways.

I have been exhausted, spinning around in circles, trying to take care of my body, rallying the troops against Hermie. I'm in a regrouping mode. Last week, I realized through further research, that I've been incorrectly doing the whole artemisinin protocol. Apparently, cancer cells do most of their reproduction during the night. The highest cell division between midnight and 1:00 am. My researcher who told me to stop eating after dinner, and walk in the evenings for a few hours before pills, never said a time to stop eating. He just said, refrain from eating for 3-4 hours after dinner, then take your pills and go to bed. So, being the old soul that I am. I decided to stop eating by 4:30 at the latest so that I could get to bed early. I like to be tucked into bed by 8:30 pm. Well, guess what, I've been sabotaging myself. The point of this low dose is to ingest the pills between 10:00 - 11:00 pm so that the artemisinin is at its most effective state during the replication of the cells (12:00-1:00 pm) - that's when the cancer cells are most vulnerable. The artemisinin has a half life of about 3-4 hours, so there was still SOME artemisinin getting through, but the doses would be incredibly low and quickly tapering off. Damn it! I'm always effing up things. Usually, when it's not life threatening stuff (like when I put my foot in my mouth), it's hilarious. But in times like this, I just have to roll my eyes, and cringe. I guess it's fitting that my mother's nickname for me is, our little Miss Brooks, from the old TV show. Miss Brooks was always "accidentally" getting into trouble, biting off more than she could chew - or trying to get one outcome and instead having it backfire.

So, my life is upside down ever since last Thursday when we realized that my early-to-bed routine was completely killing the successfulness of the artemisinin. It's nice to know that we can tweak things to make it more effective, but now, I'm completely exhausted. I've been walking for two hours from 8:00 - 10:00 pm every night with Danny, or with girl friends, and then I take my pills and head to bed, finally tucking in at about 11:00 pm.

My plan is to continue this schedule until next week when I can start the chemo drink. I want to keep fighting every single day, giving Hermie no breaks. My sleep is definitely hurting, but I know that I can push through for one more week. Once I get off my sleep pattern it's even harder to get rested, I can't seem to nap or sleep in, but I think this is worth it. I'm giving him a full frontal attack! Down with Hermie!!

I'm still on my whole foods diet, and I've been supplementing with borage seed oil (proven to attack astrocytomas), shark liver oil (immune stimulant), fish oil (helps heal the myelin sheath of healthy cells, increasing neurotransmission), maitake mushroom (proven to attack astrocytomas), shiitake mushroom (immune stimulant), lions mane (immune stimulant), vitamin C 500mg (antioxidant), and Vitamin E 400 IU (antioxidant). All supplements are taken in the morning, and then I'm taking the low doses of artemisinin late at night. On a side note, did you know that tumors can not use fat for fuel? That doesn't mean that I should go out and eat a chunk of lard, but it does make me happy to think about my fat supplements (borage seed, shark liver, fish, flax seed, etc.), all of those healthy fats are helping my body regenerate healthy cells, stimulate my immune system, and rejuvenating my body. That's exciting!!

All in all, the diet is working just fine. I'm happy with what I'm eating. It's lots of veggies, some lean meats like seafood, and then little bits of fruits, nuts, healthy fats and some whole grains. When I have a sweet tooth, I slice up a fuji and powder it with obscene amounts of cinnamon (which helps stabilize blood glucose levels). I'm enjoying my time before the chemo drink because I know that it's going to effect my taste buds and appetite. For now, I just get to enjoy my happy, healthy state. I'm mentally preparing for serious battle, putting on all of the armour (exercise, diet, artemisinin, supplements, breathing, etc.), so that I can come out a victorious warrior during the MRI on July 19th.

Saturday, May 12, 2012

I'm ready...

...to fight. Okay, I know, the photo is cheesy, but I'm finally, deep down in my soul, ready to kick Hermie's ass. I don't know if it's the vitamin D or all of the inspiring research we've been doing, but truly, who cares. The only thing that matters is that I've got my ferocious spirit back!

Thursday, May 10, 2012

Building Confidence

This is the view from the house we rented in Kauai. The trip was fantastic, hilarious, refreshing, and unbelievably memorable. But, now I'm back, and I need to figure out what I'm going to do next. Sometimes it feels impossible to sift through the different random treatments (high dose IV vitamin C, IV curcumin, hypertermia, oxygen therapy, dendritic cell therapy - need to see if UW has stored tissue from my tumor, etc.), and it's overwhelming to evaluate clinics to make sure that they're full of honest, trustworthy people. Cancer is a billion dollar a year monster, and there are many a snake oil salesmen. At times, I feel like I'm spinning in circles, engulfed by people with all of the newest cancer cures, telling me to drink $32 dollar per 36 ounce salt water that has been ionized (or something like that), drink 6 ounces four times a day and I should be cured within 6-9 months. Seriously, a guy told me to do that. He didn't even know the type of tumor I'm fighting. I'd bet that most people honestly want to help, but still, it's just too much information. I can understand why people decide to just do the standard of care.

Just as a side note, at the appointment with the radiologist on Thursday, when we went to thank him, the guy said, "No problem. I'll gladly help my colleagues to clarify and aide further treatment." So, at that appointment, Dr F (the radiologist) had an agenda to get me on board to do radiation. His job was to convince me. I feel like I can't trust these people. He also said that the other radiologists haven't been accurately reading my last few MRI scans. What the hell?!? Who do I speak to about that? I have to pay these fools. Do they know that they're playing with my life? This isn't a salad recipe, you can't just do whatever you want. This is more like a souffle - I could completely implode. Do they have no humanity? Or - is Dr F just saying that to get me on board? Who do I believe? And if they have been half-assing my reports, I think I should get a refund! I pay these people just under a couple of thousand dollars a year. I just received a bill, so I know what I pay out of pocket. After insurance, a reading of my MRI is $438. Now, I get four of those a year....so.....that's a lot of dough. And that's just the bill for the radiology reading.

My doctors sure are pulling out all of the stops to get me under radiation beams - even though for my specific tumor it will not extend my life. I've been confused about the whole agenda. It has never made sense, until yesterday while I was researching alternative options. I then confirmed with my mother, and radiation, depending on the type (whole brain, gamma knife, beam, how many beams, how many weeks, etc.) is between $200,000 - $400,000. The co-pay is $20,000-$40,000. Are you kidding me?!?!? If I'm going to spend $20,000-$40,000, I'm going to spend it on treatments that will give me more time. It's ridiculous.

I still don't understand what's happening with my artemisinin treatment. I can't seem to figure out why the two smaller areas are shrinking, yet Hermie grows. There is a chance that the artemisinin is shrinking the tumor in the way that it grew out, reversing it back to the beginning, but it's scary to risk my life on the unknown. Danny and I have gone over and over, trying to figure out what we're going to do. There are some pretty amazing clinics in Germany, and a couple in Mexico. But, it's a huge commitment to research these clinics, and it's scary. It's a big leap. But, as a friend said, "Time is life." So, instead of continuing the low doses, we've decided to start the chemo drink. My friends who eradicated their tumor, used the chemo drink, ingesting it every evening for about a year and a half, then they switched to the artemisinin. At which point most of the tumor was gone.

The drink is incredibly labor intensive. It takes about three hours to create, you have to blend things together, then cook it at 100 degrees perfectly for a long time. It's going to be incredibly tough, but it's worth a shot. This isn't something I wanted to have to do, but I have to take major steps. I can feel the tumor in my brain growing. Even Danny has been continuously noticing my deficits. I've become more frustrated too, while trying to communicate. It reminds us of when I was trying to get better after the surgeries. The worst is when I'm incredibly exhausted. I've started stuttering some, and I can feel a disconnect between my thoughts and my mouth. There's an odd delay. I'm sure that others wouldn't notice the difference since they're not around me day and night, but it's something that Dan and I notice, and we're both scared.

I feel like I need to take drastic measures to stop the growth before I start to lose my reasoning skills. I don't want to have to step aside in my active roll of care.

For now, I'm sorry for the lack of email responses, or contact with friends, but I'm completely overwhelmed. I have a serious job to do and social stuff is going to be put on hold. Thank you understanding and sending the love, support, and the prayers - I appreciate it so much, and I truly need it. After Thursday's appointment with the radiologist, my sleep has been full of fitful bouts of jactitation (learned that while reading the dictionary with Katie Jarman). I wake up in the middle of the night with my heart racing, my body breaking out in cold sweats, even in Hawaii. Last night was the first time I finally calmed myself down, and managed to slow my fear. There had been a visceral reaction to the radiologist's dictation about my scans. It filled me with fear, and for the first time, I truly realized that I might actually die. I knew that this brain cancer could kill me, but I had never absorbed the concept. I now, truly understand and it's a horrible, horrible feeling. I don't think I was in denial, I think I was just hopeful and optimistic. Now, I struggle to keep positive. Last night, laying in bed, all I could to was continue my mantra, "I'm healthy and I am strong." But, I'm definitely trying to convince myself, and build my confidence, and I'll tell you what, it's incredibly hard. This is scary.

Thursday, May 3, 2012

Hermie is Winning

The appointment went in the worst scenario possible. They proved to us that the tumor has been consistently growing. The artemisinin does not appear to be working. We all feel completely deflated. There was crying from each of us. I don't even know how to process this information. I am not winning the battle against Hermie. The radiology reports that had been showing the same measurements at each MRI, had been haphazard and the doctor apologized. He said that he's seen that before, even to one of his family members who has a low grade glioma like me. He said that there are MRI reading specialists all in a room, going case by case, and that they're overworked and they can get sloppy. That they don't always review all the way back a few MRIs to truly compare. So, basically, those reports, which we had been banking on, were bogus. 

The worst part is that the way the specialist reviewed all of the MRIs in front of us, showed that the artemisinin does not appear to be working. It should have been causing Hermie to shrink, which he hasn't. I need to regroup and think about what we're going to do next. 

Perfect timing, my Wenatchee girls planned a long weekend, gifting me with a trip to Kaui. So, tomorrow morning I'll be flying out with Kristin, Michelle, Jessaca and Jenny. These girls always cheer me up and fill me with hope. They're exceedingly intelligent, too, so I'm sure they can help me figure out what to do. 

I am so deflated, and scared. And now I am beginning to understand why so few people survive this cancer. It's vicious, tenacious, persistent, and effing strong. I just have to figure out how to outsmart it - and apparently, it's not going to be easy. 

Thank God for the baby ducks.
There's always something beautiful to find, even when you're down.

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