So that's why I came home. I wanted to be in the US with family/friends around to yell/complain and talk to. It's been like 6 months almost which is as long as I was in SoKo for and I really miss my friends there. I can't wait to go back one day! But first things first I have to get better. That's the big purpose for this blog. The blog-o-fundraising.
Here's the deal, and I want to to run through this both without making your eyes water from reading the screen for too long, but also by providing enough resources/reasoning for my decision for those that care to read more. First things first - my initial therapy.
I had previous knowledge of a cancer treatment that has been around for a while and was introduced by a German chemist, pharmacologist, and physicist. Her name was Dr. Johanna Budwig. She came up with paper chromatography which was a test that allowed us to, in the 1950's to analyze lipid structure to a detail that was previously unattainable. She was the pioneering scientist that discovered the difference between saturated and unsaturated fats, the omega fatty acid's that we all hear about now-a-days and a cancer treatment protocol that has been used for decades to treat cancer patients with great empiric results. Her own clinic boasted around a 90% success rate for all cancers at all stages. I don't want to get into an argument of empiricism, but lets just say when you see someone first hand who has benefited from this treatment - you're more incline to try it =) Plus - the science is pretty sound, if again, unfortunately un-funded (the bane of more than just medical care).
If you want more information about the diet - I would highly recommend buying her books. Only 3 have been translated into English unfortunately, but here's a really good summary of her protocol that I found on-line. Budwig
Needless to say, while one of the best ways to get tons of really clean calories into my diet, I went in for a CT scan (that took a ton of wasted time at Shands Jacksonville, a hospital I hope that nobody has to go to, at least for the Oncology staff I've experienced [although the nurses were always AMAZING and really nice.]) and it showed that I wasn't curing myself of cancer with Buwig's protocol. Darn. There are reasons as to why it might've not been working - the big two being sunlight exposure and anti-hystamine medication which are both tied together but, who knows. So I've been researching what to do now. I know that the diet I've been eating while on the Budwig Protocol is stellar so maybe no big change there. But I still don't know if going the standard ABVD route is what would be best for me.
Consider this article - Here
Those findings are consistent with the big packet on Hodgkin's that the NCCN puts out that I received from my oncologist (the one good thing that I got out of my appointments there). They didn't really jump out and say 'i'm your best bet at 24!' The highlight of the article that really stood out for me was where it talked about how permeable the cell membrane is to the chemotherapeutic drugs used on Hodgkin's lymphomas. Bazing
"after 15 years, show a FFS of 45% to 50% and an OS rate of 65% after ABVD, results that are not satisfactory considering the fact that HD is one of the most chemosensitive tumors in adults."
To me, I read this, and paired it with the earlier statement here:
"tumor cells, if not killed by the first therapeutic attack, progress, expand, and recur clonally, but mostly with additional multiple somatic mutations, leading to genetic diversity and phenotypic heterogeneity or even to a secondary non-Hodgkin’s lymphoma"
And suddenly I had more than just my previous dislike of the chemotherapeutic paradigm used to treat cancer - but I had something that was jumping out at me telling me how the first shot is the most important! Some people might see that and say how important then, the shotgun type drench your entire body in chemo method would be your best bet. However in my mind it makes it seem less effective because you have drugs that cannot differentiate between my hair and the tumor (not that hair loss is a big thing for me - I've always wanted to be bald and hairless... I'm serious!). All of this is brewing while in the back of my mind I have this vague understanding of what Insulin Potentiation Therapy is.
Ahem... please read
I had a general understanding of the facts (which can be very dangerous) so I did a bunch of digging and found out some more facts about IPT. I read through the site of the grandson of the empiric inventor of the treatment protocol which made me do more research on insulin and then I talked with an ND about possible effects of insulin therapy and possibly becoming dependent (something that this ND did see in one patient). It all feels very summarized in this paper by Dr. Ayre (he has many other papers and articles available for reference on that site under the 'Documentation' drop down up top).
To me it seems that I am better off taking chemotherapy's that are shown to be very effective against Hodgkin's tumors and guiding them to all of the problematic cells in my body, instead of washing my body with maybe more chemo than is necessary in hopes of getting them all. To me it makes more sense. I can fully and completely understand the other side of the coin as well. The problem is that it's all interpretation. Unfortunately there hasn't been any funding into this treatment; unfortunately because of the test methodology involved.
Imagine you're a doctor and you have been treating people diagnosed with cancer using IPT in conjunction with other natural immune building medicine. I was talking with Dr. Ayre's daughter who told me that most of the clinics she knows don't just use IPT to help their patients. They know of many other nutritional therapies and oxygen therapies and medications that can and have been used in conjunction with IPT to give their patient the best possible response to treatment and prognosis. This therapy has been used for decades now and there are a number of these therapies that are commonly used in conjunction with IPT that would have to be done away with in order to test *only* the effectiveness of IPT. It seems cruel to deny the people involved in a clinical trial medicine that you know is going to help their prognosis just to show the statistics of it's effectiveness.
That's science. I totally understand. But we're talking about people's lives not petri dishes filled with bacterium. So, who knows. Will one ever be done? I pray to God it does, but who knows.
In any event, I've made my decision and I feel very confident in it. The only thing to do now is raise money to get it! It's going to cost around $40,000-$50,000 to get the treatment done so this could all be for nought if I can't raise anything in a couple weeks here to at least get started. This is where I need all the help I can get.
I've been working with my dad over the past couple weeks trying to decide how I'm going to go about doing this and we've come up with two solutions. One was an obvious and went along with IPT. It's called the Elka Best Foundation ( http://www.elkabest.org/ ). This organization is all about IPT. They help patients in need of treatment that are in similar predicaments as me and can't afford the treatment. They help fund research (I guess this is a theoretical for the future?). And they help people that just might need to talk, which is where the angel that is Annie Brandt comes into play. She talked extensively with my dad and even more at length with me about her experiences with cancer and IPT. She works for the Elka Best Foundation and is a stage IV breast cancer survivor. Her story is really something special and she ended cured cancer in 2002 using IPT in conjunction with a whole slew of effective natural treatments. She was such a great experience for me to talk with because she could connect with pretty much everything I'd been going through and she's on the other side, so. HOPE! =)
I will have a link up to be able to donate through Elka Best, but the other way that I'm going to make it possible to donate is through bandcamp. Bandcamp.com is a website that allows artist to sell/distribute their music on the web without any attached fees (yet?). They use a real simple interface that integrates PayPal so it's real easy to use (Elka Best uses Google Checkout). On this site I'm putting together a a compliation of sorts of all the music that I've put written over the years. All the styles, from art pieces for my degree to dance tracks, to dark industrial works. It's more a way for people to donate directly to me and help me not feel like I'm just asking for hand outs =)
I will have both of those links up in a couple of days. I know there are maybe only a few of you that will read this, but I'm hoping that the viral effect of the internet might bring more people and help me get this treatment. I will definitely post up more information about what's going on with me and the funds and I'll be totally transparent with everybody about this. The way I look at it, it's a team effort - but our team is like the population of the world. When you think of it that way it's all about distribution. 1 penny from everyone in the world is like 67 million dollars (per Google's July 2008 estimate) so feel free to spread the world to everyone you know! A lot of you will end up overlapping with people I know as I'm probably going to end up barraging everyone I know on Facebook and MySpace and everywhere =)
Oi - that was long =)