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 team...no 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. 

Juggling Act

I am so incredibly frustrated. This happens lately with each reoccurring MRI, they juggle me around, calling the week prior to change things. They change up my appointments, cancel on me, or switch me to see nurses instead of my doctors, and it's incredibly frustrating! They don't even ask! We schedule my MRIs three months in advance. My parents take time off of work, travel to Seattle to be with me, and Danny takes time off of work.

This time, at the last minute (I still consider a week to be last minute in these trying times), they called to tell me that my neuro-oncologist is no longer going to make my appointment, and that I will be meeting with his "very knowledgeable nurse." I believe there are nurses that know much more than doctors, but in the past, my experience has not been good. Each MRI appointment that was held with a nurse instead of the oncologist has been riddled with bad information. I'm sick of meeting with a nurse, then having to come back to meet with the doctor to get my questions answered. I'm done paying for multiple appointments. It's unnecessary. I only want to talk to my oncologist. If I can't meet with my oncologist, I might as well just get the MRI and review it myself. The nurses always have to refer to the doctor to get my questions answered anyway, as they are very technical - or if you recall during the last MRI review, the nurse said my brain tumor was growing significantly when it actually remained the same exact size (10 x 16 x 9). I'm done with the roller coaster of misinformation. I realize that there will be errors, that medical professions are human, but I'm not going to pay hundreds of dollars to someone who may or may not know what they're talking about.

As a patient, I am a customer. I have hired my doctor to provide a service, which is to review my MRI with me and answer any questions I might have. It is irresponsible to cancel a meeting, and contract out the job to a less qualified (although surely nice) person. This cancer patient seems to get pushed around by her doctors. I hope that I'm the only one. It's overwhelmingly frustrating, right in a time when I least need more stress.

I left a message for the nurse who cancelled the appointment with my neuro-oncologist (she did it over a voicemail no less), letting her know that, "Yes, actually, I do have a problem meeting with the nurse practitioner, it's not personal, but I've hired the doctor to meet with me and review my MRI. My family is traveling from out of town, they've reserved hotels since I can't accommodate everyone. My husband has asked for time off, and in this economy, that's risky. We anticipate these appointments and take them very seriously; this brain tumor is our whole life, everything revolves around these appointments. I realize that the doctor has different priorities, but this cancer is incredibly overwhelming and I wish we would be shown a little more respect. We are willing to meet with the doctor any time throughout the day, surely there's a few moments when he can squeeze us in and honor our appointment."

If my new (yep, he's my new guy - I've only met with him once) neuro-oncologist is too booked up to meet with me, they shouldn't have allowed him to take me on as a new patient. I realize that I'm probably annoying since I'm very hands on, and that I always come with all sorts of questions, but I take my health very seriously. I mean, think about it, I've been told that this cancer is going to kill me, that I should not have children - I'm basically in a holding pattern, waiting for the next shoe to drop. I am astounded that this is how they treat someone who is fighting for their life. Although I do a lot of research about my cancer, my options, clinical trials, western, complementary and alternative treatments, etc., I also want to tap into the brain of my neuro-oncologist to answer my questions. I have a few non-negotiables: I will not over pay, or get double billed anymore (like an appointment with the nurse just to have to make another appointment with the doctor to get my questions answered), and I will not be pushed around with appointments. If they can't meet with me then I will need to find a new doctor (of course I won't tell THEM that - who knows if they'd even care).

I was so worked up just now that I had to walk into the kitchen and try a new recipe. It's was forwarded to me from a friend, and although I've tweaked it, it still has the same bones.

Turmeric Tea
1/2 Teaspoon ground turmeric (curcumin)
1/2 Lime (squeezed)
*Add agave, or stevia if you'd like
*Add milk if you'd like

If you don't appreciate Indian food, you may not enjoy this tea, but man, I swear it is scrumptious. I'm a tea fanatic, I actually have a whole drawer full of various teas, and I'm always excited to try new stuff. This drink is special since turmeric is known to kill cancer cells. It's pretty hard to ingest enough to actually kill cancer, but if you start sticking the root or the powder in everything, it sure makes it more likely! I also took two BioPerine pills (black pepper extract). Black pepper aids in the absorption of turmeric. Some people add milk to the tea, but I don't think it needs it. Another note, you'll want to continuously stir it, as the powder settles.

Sorry, for complaining throughout this entire post. I'm frustrated that I get so worked up about this stuff. I wish I didn't care, that I wouldn't have so many questions, that I didn't need to be integrally involved in my care. I wish I could just do whatever the doctors say, and be satisfied. It certainly would be much easier. The thing is, I just absolutely can not do it. I always need it to add up, I need reasons, and I need individualized care. Each cancer fighter is dealing with a unique situation. Patients react differently to mirrored treatments. Each tumor even in the same category is different. They grow differently, the characteristics may be similar, but they manifest in their own way. It is ingrained into my being that I will not survive if I am pooped through the medical system on a one-size-fits-all conveyor belt.

I believe that someday I won't need to take these MRIs so seriously. Someday my MRIs will be an afterthought, or non-existent. Unfortunately, in the meantime, I'm probably going to continue to be the friendly, yet annoying, cancer patient.

Time To Work

Started playing with my pills this morning. Not exactly the beer can towers of college days. Yesterday, at the gym, I weighed myself. YIKES. In January at my last MRI I weighed 144. Now, I weigh 150. I guess I need to take this a little bit more seriously. It was quite the wake up call. Dan and I talked about it for quite a bit last night. We are very strict right now, this whole week I'm on a plant based diet (other than a glass of milk each morning and evening for pills). We're going to take Saturday off to celebrate Saint Patty's day with friends, but come Sunday we will be back on the whole foods diet of months past. We will not be cheating again until after the MRI. It's been a lot of fun, but it's time to get back to business. I have to say, when I stepped on the scale and had to move the little black weight over further and further to the right, my stomach pulled into knots and my sweat pores started tingling. I was in shock.

Oh well, I can get this back on track. I love taking a week or so of only eating plants. You can eat whatever you want, as much as you want. It's actually a lot of fun. That probably sounds crazy, but it's fun to change it up. Damn. 150? Ugh. Jessica Lynn. I'm not so upset about the numbers necessarily, it's more the fact that any extra weight feeds Herm. That's always the kicker. But, each day, each meal, I decide what I'm going to put in my mouth and each step is a choice. I'm ready to conquer this next month and see what's going on in my brain at the MRI. I have to relax and play a little, but now it's time to work.

Not Mutually Exclusive

Good morning world. I'm feeling wonderful after two consecutive days of napping. Yesterday I even napped twice. Today, apparently, I was still pretty pooped, I slept in until 10:00 am. That is a straight up miracle since I had been waking up in the six o'clock hour all week.

Danny and I have been hitting the weights pretty hard, keeping up with the running, and it's causing a delicious exhaustion of my body. It's a great feeling. It makes me feel so alive! Last Wednesday I did 90 squats with the weight bar bearing 5 lbs on each side. I don't know exactly how heavy that is, but it felt punishing. I probably sound weird, but it's thrilling to push my body. While exercising, I often flash back to the days in the ICU, and then the weeks, and months when I couldn't run or lift weights.

At the time when you're unable to push yourself for fears of seizures, or just flat out pressure on your brain, you feel like you may never get better, that you might not recover. Each time I get to push myself, each time I sprint in the final strides around Green Lake, I end up panting with deep breaths, elated, almost giddy at my abilities. I tell myself, as I wind down into a slow walk, "You just kicked ass!" There's something about really pushing your limits, and I think it's okay to fluff you own feathers. When you get off your butt and challenge your body, you should be proud! There's no shame in that.

It's Monday, so I'm back on my high doses of pills. Today, I thought I'd share exactly the brands that I use, and exactly the what the doses look like. It's 4 pills from each bottle, taken with a cup of whole organic milk. It's important to take the pills with whole milk because the pills are fat soluble.

I am writing this blog to share my experiences throughout my brain cancer journey, including my various treatments. My hope is to have step by step information to share with others who may find themselves in a similar position. I hope my new friend won't mind, but I'm very excited to share that I was contacted by the brother of a gentleman fighting a glioblastoma. He found my blog while trying to exhaust alternative treatments as he has already endured a brain surgery, radiation, chemotherapy, a second brain surgery and the placement of chemo wafers in the tumor cavity. His brother is a total badass cancer fighter. I shared with him more information about the past several months and what I've been doing. I realize that my blog isn't exactly easy to navigate, so I was ecstatic that he emailed with questions! I am so hopeful that my information might be helpful. This is my dream, to be contacted and help share what I've learned. It's FANTASTIC. I truly believe that we can beat these cancers, it's just a matter of varying the doses as we find what works best, and each body is different.

This treatment directly targets cancer cells while leaving healthy cells intact and unharmed. It's amazing! It's everything we've ever looked for, it's everything we've been dreaming of. To anyone out there, please, never hesitate to contact me with questions. I want to help. I want to share everything that I know. Yes, diet is very important, as is with exercise, and reducing stress. But, diet and life changes alone will not cure you of brain cancer. That's what I believe anyway, and statistics seem to concur. We have to be proactive in our treatment. I mean, think about it, if this treatment of mine doesn't cause any damage to healthy cells, why not try it? What do you have to lose? We've already shown that it worked from Oct - Jan between my MRI scans. No. New. Growth. None. Zero. On slides from the two MRI scans, comparing the exact slices, little Hermie appears to maybe even have shrunk just a tid. He definitely lessened in intensity. It's scary to go outside the bounds of our doctor's advice, but it's already been stated by the same doctors that they can't cure brain cancer. So, essentially, they don't have a solution for me. I'm on my own, except for my teammates in the artemisinin cancer fighting world. Thank God for them. I've always been a sucker for answers, and I have never been good at following statements like, "Because I said so." That just doesn't work for me. Sorry, doctors, you'll have to give me a better reason not to try other options.

I realize the doctors are just trying to be cautious and they don't want me to have any other complications, but when there are so few (effectively none) treatments that cure brain cancer, I would be a fool to follow their advice and avoid alternative options. Just because there isn't a clinical trial proving the validity of artemisinin, doesn't mean it isn't effective. The two are not mutually exclusive.

Partners In Crime

This morning started with our pills. Mine included 12,000 mg of bioavailable curcumin and 6 bioperine (black pepper for absorption), Jess's included 1,500 mg of biovailable curcumin and 1 bioperine. Jess is doing the baby version of mine so that she can understand what I've been going through. She's great! And obviously crazy :) 

Next, twenty minutes after the pills we took our first big gulps...