Day to Day

Good morning! I've got the venom routine down, now I'm fiddling with the diet. I emailed the clinic too see if their "low fat" instructions have to do with an interaction with the venom or if they are purely giving nutritional advice. If there's some sort of interaction with the venom then I'll be all about the green drinks again (Yesss!!)), but if it's just a suggestion for general health I'll stay with the restricted keto (or a version of). I have the restricted keto ingrained in me, I still check my blood glucose, and I get a visceral reaction when my glucose is above the 70's. I become very fearful that I'm feeding the tumor, and that's not good. In a way I kind of wish I never would have purchased a blood glucose monitor. It's weird to be afraid of eating a whole apple. On the RKD you can have apple, but just a little bit and you have to eat it with some fat to keep the ratio.  It's complicated. I love the benefits that are shown with the RKD but I dislike the reality of the lifestyle.

On a very positive note, Dan sold our truck! We now have October's immunotherapy shot paid for. Yay! You know what ISN'T fun? You get penalized by your insurance when you only have one car. It's a good business model for the insurance companies because they want families to have all of their cars with the same company, but if you are a one car family you get zero discounts (unless you guys know of any companies that support single car families...please let me know), and you pay much more for the same service. Ugh.

Man. Dang it. Just got interrupted by a phone call from my health insurance. Somehow they think they need to call me every few weeks to ensure that I have end of life directives, and they want to assess if I will need hospice soon. If that's not depressing, and terrifying, I don't know what is. I got a little upset and told them that I would call THEM if things got worse, or maybe they would notice from my claims that I was clearly having problems when that time comes. I don't need an effing reminder of what I'm going through, or what they're expecting to have happen. It makes it hard to stay positive. I've had a few conversations with friends about my confusion over the term "cancer", or the concept of being "sick". It's weird because I feel pretty great, but clearly I'm not normal, or technically healthy either. That's why I'm doing all of these treatments. That's why my life revolves around research, supplements, immunotherapy shots, diet, and now the venom. I'm healthy, but at the same time I'm stuck in this fog of responsibility, always oscillating between fear, hope, reality, and dreams.

As I have MRIs every three months, and shots in NYC every two months, and supplements four times a day, and now eight applications of venom a day, it can be very overwhelming, and although I feel physically well, my life does not feel "normal" by any means. I'm stuck in these tiny bubbles, always one moment to the next, one day at a time, and don't get me wrong, I love it. I LOVE being alive! But we can't ever plan for a trip, for an actual wedding or wedding celebration, or a holiday, or anything long term like having children. That fact doesn't normally bother me because I'm literally living in the moment, but when I'm slapped with a phone call from the nurses of my insurance company, it all comes crashing back to my consciousness. One day leads into another day, and before you know it it's been over three years of a diagnosis, of doctor's appointments, of MRIs, of brain surgeries, of traveling for new and better care, researching and researching and researching. I love my life, and I'm very happy, but it is also scary sometimes to think that this could be my life up until the end, just day to day. Each three month span brings with it the fear of recurrence and thus more significant treatments like chemo or radiation. I've already dodged the radiation bullet once by saying no thank you, but there is always a lingering fear of a time when I may be so desperate that I'll acquiesce.

On days like today, all I can do is find something that makes me laugh, and this is it, a picture of Jules and I a few days ago being ladies who lunch. Keeping it classy...

Chlorotoxin

It's been a busy several days. Rested for a bit, then headed up to Friday Harbor to attend a memorial for one of my classmates. Tough stuff. I made it home Saturday night, just in time for the arrival of my newest additional treatment.

My parents arrived in Seattle at around midnight this Saturday. They had traveled to procure a treatment called chlorotoxin. They got it from a clinic, and I know some of you will think we're crazy because there's only anecdotal reports, but who cares. Why not try it! The worst thing that could happen would be a lowering of the inflammation in my body and at best it could cure me.

There's an actual protocol to follow, and please know that the clinic that they went to was incredibly thorough, wanting all of my pathology, radiation reports, blood work, among other stuff. Before my parents even flew out on their journey, the clinic in had reviewed all of my medical history. In fact, this clinic had the most thorough evaluation of my medical situation out of all my dealings with doctors.

So yesterday morning I began my treatment journey with the chlorotoxin. It will last for three months. I have four times a day that I measure out 25 ml of my dilution (it's suspended in distilled water), I hold the amount in my mouth, swishing it around under my tongue for one minute, then I swallow it. Also, four times a day I use a different dilution (much more concentrated). I lay on my back and suspend my head over the edge of the couch, using the camera app on my cell phone to direct the dropper, I release two drops of the diluted chlorotoxin liquid into each nostril.

The first time I did the nasal drops, we had used the same syringe to extract the pure cholorotoxin and put it in the distilled water. Not remembering that, when I had the first drops I'm pretty sure the entire green lake area heard a guttural scream. My eyes instantly released streams of tears, and I barely kept myself from sneezing. The burning sensation eventually lessened and I was fine. About 10 minutes later my right arm and hand started acting very, very weird. Not like a seizure aura feeling (which I also feel in my right hand), but just a very, very odd sensation. Then, there was a rushing, like waves ebbing and flowing between my fingers, my hand, and my elbow. Then, like a fog lifting, I could feel my hand again! My hand was healed! It felt magnificent. I couldn't believe it!! We looked at my two hands and on my right hand we noticed the pads of my palm, along with my pinkie and ring fingers, were bright red. Lot's of blood flow happening. We reminisced about how I couldn't feel my right hand after the first surgery, back in 2010, and it felt so weird that I never wanted my hands to touch, or hold Dan's hand - or really use my right hand at all. A real tricky situation for a right-hander. It got better before the second surgery, but again in October of last year, after the third surgery, my hand was funky again. My right hand, arm, leg, and foot are all off, and as far as I can tell it has not been getting better. Anyway, for a brief few moments, perhaps even five minutes, I felt normal again. But, as things go, the sensation faded, and as it did, my arm, hand, leg, and foot became exhausted. It was as if I had just finished a full marathon without ever having trained.

I haven't had a repeat of the healing episode during any of my other applications, but we believe that's because I accidentally had a stronger dose at the onset. All of the other times that I've ingested the drink, or used the nasal drops, have been innocuous, but since I already know from the inception dose, that this is not just a random treatment. At times it feels like it's just distilled water, because there's really no taste, but there's definitely something about this stuff. Even if it was just working on lowing inflammation, I'm happy with that. And if it was cleaning out tumor cells, then Hell Yes!!

So, I'm adding this treatment to my newcastle disease virus treatments. (The clinic says that the chlorotoxin does not interfere with immunotherapies, chemotherapies, or radiation. In fact, they work synergistically.) I have a three month supply, and although I have 8 applications a day, it is already getting me into a fabulous routine. I can do the drink, and the nasal drops at the same time so I only have to get to the kitchen at 8, 12, 4, and 8. They want me to eat a low fat diet (the exact opposite of the keto - isn't that how it always works), and vast amounts of raw vegetables and fruits. No alcohol and no smoking are the directives which will not be a problem. I'm very excited for this phase of my cancer life. I thrive on routine, and I love a good challenge.

A HUGE thank you to my parents for doing incredible amounts of research, corresponding with the clinic, and then of course for traveling all the way to procure the chlorotoxin.

Here's a photo of my first shot of venom. Delicious :)

You know, this chlorotoxin thing sounds crazy. We first learned of it back in 2010, but it seemed outrageous. However, the real turning point was when family friends who were dealing with their cancer at University of Washington had a conversation with their oncologist, and he mentioned that clinical trials with the chlorotoxin are underway at the university. It's not to drink it (of course, that would be too simple), instead they are working with a form of synthetic chlorotoxin (gotta do synthetic so that they can patent it), to paint tumor cells to increase accuracy during surgeries. Anyway, I don't know the whole story on that, but when we connected those dots we immediately decided we needed to go to the source, and give this stuff a shot. We refuse to wait for years, and years, perhaps decades for clinical trials to become standard of care.

Hopefully this chlorotoxin is cleaning out the inflammation, and cleaning out the tumor cells. I'm very impressed by my accidental overdose with the nasal drops, the reaction was nothing less than a miracle. If my parents and Dan hadn't been there to witness, I think I would have ended up over time discrediting my own account. It's just too wild. But it did happen, and I'm pretty excited about it.

Below is an interesting article about the chlorotoxin. The more you research it, the more anecdotal articles that you find. There's not a lot of empirical data out there, but that doesn't mean that it doesn't work.