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.

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.