Stanford, Remove Primary, Treatment Options

Haven't posted in a while. Blogger's been messed up for a few days, but I've been messed up for a much longer time. Went to a week long trade show the first week of November, came back from there and on the anniversary of my original biopsy went to Stanford to the Head and Neck clinic for consultation. They scheduled another biopsy for the 21st, so did that. They took out some bits including right tonsil and found the primary in there, so completely removed that tonsil. I was on liquid hydrocodone with a massive sore throat for about ten days. Throat is still sore 16 or 17 days later.

Went back 10 days later to explore treatment options. Of course it's chemo/rad vs. a suicide in their minds. I wrestled so hard with all of that and finally opted for a combination of faith and my organic methods. They were surprised that I was 'doing as well as I was' two years after dx. It's been a very tough decision, but conv. treatment... well, I'm tired of talking about it. It's horrendous and would probably involve things like bankruptcy and dentures and being really really sick for quite a while.

Massive interpersonal relationship issues on top of that. Ah, life. I've been in a state of shock. Just coming out. See previous post.

Sometimes I want to speak without the censor

There are times when I just want to be able to say whatever it is that’s on my mind without having to censor it, ya’ know? It is a big thing to pack around, there’s no denying that. I know that you probably understand the feelings you get. I just never know if today is the first day of the last six months on earth or if that symptom, whatever it is, is the beginning of some unknown something that means ‘it’s happening’. The story with aggressive cancer is supposed to be that if you let it begin, then it quickly takes over. That’s why the docs are so aggressive with treatment. You should hear them talk to me (when I used to go to them). The whole ‘Oh my god, we have to go in like yesterday” and “I can’t believe that you’ve waited this long.” And the feeling that this will probably be an attribute that I carry around for the rest of my life. God has blessed me with that. :-)

Sometimes I want to dwell on the Cancer (there, I said the word), think about it; try to foresee the potential unraveling of my life force. I think it’s a control issue. I want to be in control and ‘ready’ for whatever may come. All of that stuff about ‘how would I deal with it if it looked like this or that?’ Hell, I’ve beaten the odds so far, probably by 6 or 8 months. For how much longer? Maybe till I’m 80?

Other times I want to ignore it and just go about my life. Somewhere in between denial and not lending it any credibility.

I know that I can make it better by taking extreme care of myself. Sometimes I feel like it doesn’t leave a lot of energy left to support anyone else or to have much left over to give to the world. I need to be able to pretty much do exactly what I want exactly when I want to do it. Whether that’s running wheelbarrows full of dirt from here to there in the garden, taking a nap or doing some emotional ‘homework’.

I’m working on feeling like I’m worth the time and energy to take care of myself.

Sometimes I’m just tired of the whole thing, the work and the struggle and the emotions and I think how easy it would be to just let it come and take me away, rather than do all the work. I’m aware that all I have to do is ‘allow’ it in. I work on that one often enough that it’s for real. I can’t beat this through ‘will power’. I can only beat it through self love, which is also that crap about climbing down into the ‘dark night of the soul’ shit and uncovering all that is ‘not love’ and exposing it to the light of day, even if that makes me sad, or cry or whateverthefuck.

I like the fact that I'm living sort of alone and I can just BE who I want to be in the moment without having to consider somebody else’s needs.

“These days I'm learning that it's also a privilege to sit with someone in life. Really sit. Really be. In life, in breath. I know that you know what I'm talking about here.”

I totally grok this. I’m learning also to accept and be totally aware of and in myself. It brings up the ‘not love’.

We all have our dharma, our soul’s work to do and mine is no more important or particularly harder than anyone else’s. I can think of a LOT of life situations I wouldn’t trade including mindlessness, lack of awareness like those who can sit in front of the TV and cover up their pain with cheap beer (or expensive single malt scotch), not to mention being in Ethiopia and suffering on so many levels. I GLADLY ACCEPT THE CANCER DIAGNOSIS AS MY EMOTIONAL WORK! I also know how it has driven me (and is driving me) to do my soul’s work and for that I am grateful.



We’re all exactly where we’re supposed to be doing exactly what we’re supposed to be doing.

I have to beat this because everyone expects me to

Some days it seems like a lot to ask. Somebody defined a nightmare as
1. Bad things are happening and worse things are threatened.
2. you are powerless to do anything about it
3. There is no end, no time limit, no 'only two more days or years' and it'll be over.

The difference between a nightmare and a bad dream is if you change any one of these. So there will never be a time when I am 'cured'. I'll always be under the threat of anything can happen at any time. There's no denying that number 1 is true. There's not much 'bad' happening at the moment other than relatively subtle daily warnings of tenderness, fatigue and some swelling. The symptoms kinda feel like a 'tease' ongoing, always there. So number 2. I'm not powerless if I choose not to be. Let's turn this from a nightmare into a bad dream. Problem is that I don't want to be strong EVERY Flickin' day! It's tiring, its boring and its not real.

Nietzsche said "When things are really bad, being sane is an insane response".

So back to the beginning. I feel like I need to beat this because everyone wants and expects me to. That's a heavy burden in itself. Here's the list:
"Take your pills every day"
"Only eat healthy"
"Exercise a lot"
"Do your spiritual work" Hey, If I die, I wasn't spiritual enough. Now there's a big responsibility.
"Do your emotional work" Hey, if I die, I wasn't emotionally mature enough (to suit everyone else.)

I might die. If you have a problem with it, "YOU TRY PULLING THIS OFF!!!"

It's constant it seems

We're all on fire here in North Cal. Weird people are telling us its because we let gays get married now. God's punishment. People are strange, so insulated from reality, out to lunch. I stay away from that part of the population, I guess. Anyway, we're breathing a ton of smoke up here and that just doesn't help much. I take a nap and wake up tired. I know I can't just keep going. That won't work. I did go get some organic vegetables so i could start juicing again and fasting, but I also got a bunch of other organic stuff that I like to eat! Hard to start a fast when the fridge is full of good stuff, huh? Part of my life has felt like 'there's never enough time'. That belief system needs to change. I have to go back to 'just say f*** it'. I'm trying. The cancer will make me if I don't do it on my own. I know that.