The News. An Addendum.

Well somehow in my crafting that last piece over 3 computers and 2 devices, in a few word processing programs, etc etc, I seemed to l have left out a few things I had wanted to add, and a few things I at one time did add, or at least am sure I did, no I swear….. (even if i can not find it anywhere). So, this will be a repository for those thoughts, though arranged a bit more haphazardly than I enjoy.

One.
At no point do I want to discount the immunotherapy in my success. I am not so arrogant that I refuse to see that while it did not work long term for me, it did not start me out on a road to recovery, a return to health.
And while I have my suspicions, I will never truly know if my nutritional/meditative/intentional treatment plan would work for me all on its own. And to be perfectly honest; also, I am MOST unwilling to go back and try all over again….

Two.
This worked today for me. And frankly it worked not just through intention and diet, it worked because I was supported by friends in the most awesome ways.

I dedicate this song to all my friends. I love you all. a lot lot lot.

I say this because I am 100% sure that without this support I would not have been successful. When you are doubted, it influences you. You can feel it, just like when someone stares at you from across the room and you feel them peering into your soul. To me this is the energy of doubt, and it vibrates at a frequency that dissolves intention.

What exactly am I getting at, you ask? I go back to saying, this worked for me today. I have no idea if it would work for anyone else or even if I could replicate it again. But I would certainly tell someone what I did and how I got from A to B, if, and this is a big IF, they asked me.

I do not want to wear this like testimony. I will not proselytize this, outside of telling my story. I will surely never tell someone deep into a treatment that it did not work for me. (For some reason when people hear you are ill, and specifically if you have a type of cancer, they want to tell their story/experience with it. Even if it is second hand. Even if it is unhelpful. Even if… Actually especially then. At least for me, 95% of the time this does not help.)

This is what I am really getting at. If you ever take anything away from me, please make it this: When someone is deciding on a treatment option for anything, if they ask you specifically, that is the time to express concern for choices and why you may favor one over another. But once someone you know has chosen a path, your job as a friend/support/wtfever is to leave the energy of doubt outside and believe they will get better, especially if they have opted for a type of treatment you would not have.

Medicine is personal.
Absolutely personal.

Anytime someone is forced with making a choice that will affect their health it is a defining, life altering choice. And if my experience is anything like others, it is nothing one decides on lightly.

And again, once one has made their choice it demands respect. Doubt destabilizes, support nurtures. And trust me, when mending, support is vitally important, even if just a digital hand to hold via skype. I simply CANNOT emphasize this enough.

Boiled down: every person needs the space to heal, and in that space they will decide what is right for them, and again, i cannot state this emphatically enough: support that choice like it is your job, the air you breathe, etc etc.

Three.

The day I did my lab work after the 150 day experiment, I treated myself to pad see ew, large fried rice noodles sort of like pad thai. I had not had them for well over the 150 days, and since they have been a very regular staple of my Thailand diet (well minus the past 150+ days…), it was a treat I was allowing myself (as ingesting them would no longer influence the results). I actually started anticipating it a month or so before. And during that time, lets just say my mouth watered quite a bit just thinking about it, knowing in a few short days a plateful would be mine (yes, i guess avarice really is a thing, huh?).

And yet, when I put the first warm, wide rice noodle in my mouth, well lets just say the presumed fireworks did not go off. In the proverbial way, it was misfire, a complete and utter dud, just like those unpopped firecrackers my friends and I would search out ever so early in the morning on July fifth, hoping against all expectations that the holiday could be extended a little longer, even if just for one pop. So yeah… it was not love at first taste all over again. It was major effing disappointment.

After this I did not wind up planning any sort of ‘treat’ after I got the results back. I did plan on celebrating, but as I stated before, I was unsure just how much I would be celebrating. And when I did go out to that celebratory dinner, though I had not planned on it, I ordered what came natural to me: lemongrass tea and an avocado salad (or you know, pretty much what I had consumed by the kilo over the course of my experiment). It was not till sometime the next day that I realized this. And frankly, I see this as nothing less than my total immersion into the healing/mending process.

I had wondered how much I would change these healthy habits, this regime of mending, rebuilding, etc etc, “if i healed myself.” And this just really brings it home. Sometime early last year I was emailing with someone (forgive me if it was you, I do not remember exactly who) back and forth about how I had spent so many years as a vegetarian (it will be 3 decades next year) and thought that was doing enough to ensure my health. Oh how wrong I was….

I have read many times that it takes 10, 15, 21, or whatever number to change a behavior into a habit. And well, after this 150 day experiment (this really needs a name, as writing 150 day experiment over and over again makes me feel a bit too much like a lab animal, anyone have something better?), I can honestly say, I have established a new way. My diet has dramatically changed, well insofar as it is anti-acid foods, cancer and other diseases grow in acidified cellular environments. And while I have reduced my daily meditation time to 2ish hours rather than 3, this is really my only major modification of my aforementioned plan. While I am not following the diet with absolute religious devotion — I’m letting myself have noodles or bread, in very short quantities, every so often — I am using the target of eating only alkaline foods 95% of my diet. And still drinking green juices in volume enough to occasionally make my pee turn Kermit the Frog green.

In all, this 150 day effort has been transformative in so many ways, and I certainly feel like a better person all around. And weller.

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The News.

January eighth. A tuesday. The day I got the results from my 150 day experiment.

It started with me sleeping in a bit longer than normal, two hours of meditation and then my new weekly Qi Gong class, a class where I purposefully opted to stand rather than sit. I reasoned on my walk home the night before that for me sitting was a type of defeat, and since I knew I would hear good news later in the day, I needed to stay away from anything akin to defeat. I needed a win, and while this was a bit hard, it was one i could manage.

So I stood as I moved through the positions radiating and intaking healing energies. And when it came time to close the class, I was still standing. And smiling (though, i am pretty sure it is impossible to not smile after qi gong). And awash in vibrant energy (my skin felt a bit like I had bathed in tiger balm molecules).

As the day went on, that feeling never went away, in fact a nervous energy also swept over me, making me feel like I was generating and/or receiving something like stereophonic energy, pumping on multiple channels to the beat of my heart.

And with that much energy surging through me, I was a bit more antsy than usual. And frankly, ever since I had my tests on the 2nd, my sense of surety on being cancer free felt less buoyant. Struggling to tread water as the weight of doubt multiplied, the antsy felt far more like flailing. So while I focused on controlling my breath, I also found myself looking at the clock, almost like I was gasping for air, right before an undertow dipped me beneath the waves.

I guess you could say I was a bit nervous.

I had been so sure for 150 days. But once the coming test results were out of my hands, well out of my body, it became harder to know, as if my physical connection to those pieces/parts of me removed sank farther underwater each day. So I spent the day helping out at my favorite cafe, just waiting for three o’clock to roll around, so I could jet off to the hospital to collect the results. The results I was now only half sure were going to tell me what I wanted to hear.

Even with trying to stay busy, the waiting was quite time consuming. I swear I could hear the seconds ever so slowly tick away, at something close to 1/5th the normal speed. Tick, tick, tick… I could hear each long second tick, even from the digital clock on my phone. I told myself that I must be really present to feel each moment take so long to switch to the next…

At least I was able to keep my good humor about it, right?

Three o’clock rolled by and even though I was being magnetically pulled toward the hospital, I kept looking for an exit strategy. “If I was so sure, if I knew from my basest particle that I would be successful, and then if I am not, will I ever be able to trust myself again?”, “Do I really need to know?”, “Just how loud will the ‘I told you so’s be?”, etc, etc. But I refused to let the inertia of doubt derail me. Even if what I heard was not the all clear I wanted to hear, I knew the dedication I had shown, the rigor at which I followed my plan would get me where I wanted to go, even if it took longer than I wanted. I would not let myself give up or be defeated.
So I fidgeted my entire ride there, wavering back and forth on if I was going to get good or bad news, just like the crashing of the waves, and the rising of the tides. And then when I got there, it felt like an eternity to sit and wait. As trite as it may seem, Tom Petty’s refrain, “the waiting is the hardest part,” kept channeling through my head. But, without a doubt, as I have mentioned before, he is correct. Absolutely correct.

And then it was time. To make this tie in with the rest of this, it would be nice to say time shifted to slow motion as I got up and walked to hear the news, but it simply did not. It more shifted into warp drive. The only thing that slowed down was my breathing. And then when I heard the news, I stopped breathing entirely, as I was not prepared to hear what was said.

I wish this part of the conversation was recorded, as everything was moving so fast and my lack of breathing only exacerbated that. But the gist of what was said, was: ‘we can find no trace of cancer in you, but we need you to come back in for more tests, as it does not make sense.’ So yes, contrary to all the intentional thinking, the visualization, the diet, the music, the everything I did, I was not prepared to hear this. How crazy is that?

Some more things were said, but I had a hard time hearing them. I was unable to focus. The single thing that I can most vividly remember is that I was smiling like an imbecile. Smiling so big, that my ears acted as the strangest dimples. Go ahead, try and visualize that without laughing….

So I scheduled more tests and shot over to tell my friend Keiko the news. She beat breast cancer a few years ago, and the amount of times we have chatted about how awful the big C is, I knew she needed be the first person I told. And when I told her, we did a bit of hopping and something akin to a jig in the kitchen. “Cancer free, cancer free, cancer free….” our refrain went.

I had about 40 minutes till I was supposed to met a friend for a celebratory dinner, so I told one of my furry cat friends the news and he curled up on my lap and began to purr in a way that I had never heard before. It was fairly easy to see he was as pleased as I was with the news. We had had many a chat about what was happening, so his comfort and pleasure at my news of success was beyond welcome.

Then I headed over to meet my friend for dinner, where there was an absolute glow to our conversation. It felt like our many words took on a physical quality, like bricks, or even tetris bricks, and as we said them they would fall, building up around us, a healthy protective barrier to any ill will, thought, etc out there. And in fact, this just further strengthened the protective cocoon I had created earlier in the day during Qigong. It was a an utterly magical conversation. That said, I don’t remember much of the exact words that were said, just the glow we emanated. What I do remember is the question my friend asked: “are you concerned about these next tests?”, to which I replied: “No. These tests are for the doctors, not for me.”

Apparently the doubt that had been hanging onto me like a fringe of lint, had been expelled from my person entirely, for as i sang out with my friend Keiko, “cancer free, cancer free….”.

January 8th: I feel like this needs a star date or something to make it official.

I wrote the above two weeks ago. But the whole doubt thing crept back in and I began to worry about posting it, as having to backtrack such good news would have been more than just a bit demoralizing. So I opted to only reveal this after getting the second round of results. I honestly expected to receive them on this past Monday. But heard nothing. And then the doubt shifted into overdrive. I sadly started to assume the bloom of “cancer free” was wilting. Clearly, my strength of conviction/intention is not as strong waiting as when doing.

But… My doubt was for naught. January 24th, three weeks after I first went in to see how successful my ‘150 day to being cancer free experiment’ went I got the news I have been desperately waiting for. Cancer free status: confirmed! Living with intent and purpose, focused on healing and mending, feeding myself only nourishing anti-cancer thoughts and foods, shelving – as much as possible – doubt, negativity, outrage, etc…, lead me to where I wanted to go.

As my friend reminded me when I told her the good news for a second time, the universe is a pretty sweet and magical place and being able to stick around in it a bit longer is a treat of massive proportions.

After I got the news, I wrote a song and belted it out as I rode my bike. It went like this: “dancing, dancing, dancing…” repeated about 45K times. And as you sing it, you have to be smiling, and if possible veering from side to side of the street, radiating joy so brashly and vibrantly that you can not fail to infect any and all others you encounter with it.

And while I have five more months till I get the all clear “in remission” status I hoped to have right now, from here on out I am committed to do so without doubt, and just the assuredness that success brings. In the meantime I am gonna just bask in the amazingness of this sweet and magical universe.

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You are What you Hear Too

One more avenue I walked down in preparing a cancer free zone throughout my body was though music. I started listening to the first three of these songs every morning after meditation to psyche myself up with positive thoughts spurred on by positive music. As this went on for sometime, I started combing my music library for uplifting gems, which sadly I do not have too many of (one could write an impressively sized thesis on depressive/melancholic collections of music and how it effects illness and disease I’m afraid). I weeded out the ones that while uplifting were strictly in the “if it were not for you, I’d be miserable” camp. Then focused on one hour as a time frame, and arrived at these 15 songs as an orchestrated mantra to getting better, to mending, to achieving health. (And note those verbs, they are about improving, not normal battle/war like words that so often seem to describe one’s relation to illness; and really, just how useful is it to discuss the inner workings of your body with military actions?)

Obviously this is a very subjective list of songs, but when ever I felt the winds of disillusionment about my healing project (and as much as I want to say I never felt them, that I excelled over them as the days progressed, etc etc… I felt them, I surely did — they came singing through, but I never opted to carry their tunes), this was the perfect spring board to push me back into reaping all the benefits of healthy intention and the concentrated power of super healthy eating.

You are what you eat, you are what you think, and likewise, you are also what you hear.

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One Hundred and Sixty One

So I wrote this at the beginning of August of last year, or you know, 161 days before today. (In my mind, this was going to be published on Jan 1, which was exactly 150 days from when I wrote this, but I got a bit too excited and forgot a few things, like having to wait a week for tests results, etc…)

Why you ask, did I wait so long to publish it?

Well… I made a huge decision on my treatment — rejecting western treatment options  to opt strictly for a nutrition based treatment with an extra load of meditation to rid my body of cancer — and I made the decision to avoid talking about this, as I was concerned about being polluted with doubt that I may have received from taking what some may view as a “drastic” or “unwarranted” step.

So what brought about this change? In July, I had what is easily one of the scariest episodes of my life. Due to the meds I was taking, I started to lose my ability to remember things, both short term and long term memories, Poof! In fact, I lost at least one entire day where I have absolutely no idea what happened, where I went, what I did, or even if I woke up at all (though the people at my guesthouse assured me that I did get up and leave.)

I started to worry that my family’s history with dementia and Alzheimer’s fell on me with the weight of the loudest “TIMBER!” bellowed in a logging camp. This was especially hard for me because up till then, my body seemed intent on only reject my body, leaving my mind alone. I worried that something was turning my brain to Swiss cheese or a set of damp, limp, unkempt, stained, frayed doilies. They even had to check if I had a brain eating virus, well they thankfully said “rule out” rather than check, but still those are three words you never want to hear while in a examination room. And with that worry came an un-swayable decision that if my brain was going, I was going to give up on any and all treatments, and just give it my all to do as much, be as much as possible before I lost whatever remained. I was far more than worried, I was TERRIFIED!

Thankfully, it turned out to be just nutritional and mineral deficiencies, in B vitamins, iron, magnesium, Vitamin D, and whatnot. But this relief that my brain was not a well honed ant farm did not also extend to my faith in western treatment options. As, once again, the side effects, the after effects really, bit me quite hard on the ass. Memory loss was not the first time I felt failed by the allopathic techniques of western medicine. But like some codependent/addict, I always went back to the till, grasping for my next fix, even as my body further deteriorated.

I walk with a cane because of Prednisone and the after effects of steroid use, err… overuse. My reliance on this drug ate away a huge portion of bone in my leg, where now I can not stand unaided without the distinct possibility of my bone snapping and physically can not walk without my brace/cane as my bone is not strong enough to support even my feeble weight. Then as Lupus kept ravaging my system and I was unable to take more Prednisone, I opted to due the nuclear option and went all in with chemo. And while I know I would most likely not be alive today without this treatment, I also now know that one of the drugs from my chemo cocktail has been linked to future cases of Lymphoma.

I read that in late June, in the amazing book The Emperor of all Maladies: A Biography of Cancer. And the foundation of faith I had in western medicine absolutely crumbled. I also, stopped breathing, trembled and wept: “could I have done this to myself?” Then, “why did I do this to myself?”

It was not a good evening. To say the least.

Thankfully, I am out of this self-pitying spiral. But it was a hard journey to make. The most ironic part, that without the chemo, I know I never could have made it, as the person I used to be would have sabotaged any other healing efforts. I may or may not have laughed uncontrollably upon this realization. And as perverse as that may be, it is totally true.

And for that alone, I can appreciate what has happened to me post chemo. I am a much better me. I exist in the present tense. I exist without a corrosive venom coursing though my veins. I exist.

But, and this is a huge BUT… there is a very strong likelihood that my adventures in chemo spurred on this cancer, incubating it. The healing of one bout against my eventual mortality quite probably only prolonged that bout. And while I intrinsically know death is an inevitable end to being alive, I am not thrilled with the idea I most likely invited its minion, cancer, into my body.

And now I am taking responsibility for this action here. I could easily blame my doctors for conjuring up a chemo cocktail in a way that made me more susceptible for growing Lymphoma within me. And trust me the desire is there, to look outward for blame. But I am taking responsibility for this. As well as taking responsibility for anything that occurs health wise in my future. And really, that is one of the reasons I think I stayed with a tradition that ruined my leg, ravaged my kidneys, and most probably prompted the lymphoma: not only did I want someone else to blame if things did not go well, I needed someone else.

That need is over.

This is the part I tell you what my plan to heal myself is/was. First, this is my 150 day plan, because I have decided to be cancer free by January 1st 2013 (which in an moment of perfect kismet was exactly 150 days away from making this decision, which I took as a harbinger of excellence, an omen that could not be denied). And while that may sound audacious, arrogant, delusional, naive, or any other adjective to you, I see it as intentional. Without intent I will never achieve anything. But intent takes action too. As appealing as the idea might be, I do not believe that I can just will away cancer. My will needs help (and for me just admitting this is such a huge step).

And that help is coming from a multitude of sources. I begin my day with two to three hours a day of meditation. Here I will work on freeing my body from any contaminants, both physical and emotional, that could assist cancer growth. This also helps me hone my mind to be far more positive and less unbalanced; thus, healthier in spades. Say what you like, but I am more than convinced a negative, unbalanced mind promotes disease and illness. I only have to look at where I have been, the inner energies I cultivated, etc, etc… to see this as fact.

With each mouthful I consume, I am also intently thinking, concentrating, actualizing, that what I am ingesting is ridding my body of cancer cells. To do this I am opting to restrict my diet to only the absolutely healthiest foods. I am going mad with juice consumption. As in, liters of mostly green juice a day. I am also drinking at least two liters of lemongrass tea a day. I read of a scientist who dropped lemongrass extract in test tubes with cancer cells in them. The lemongrass completely eradicated them. I also am totally and completely jumping on the spirulina bandwagon with triple the daily recommended dose. And avocados, which to my happy surprise contain every nutrient and mineral the meds stripped from me. So it has been nearly a Kilo of avocados a day as well. And 90% of everything I consume is raw, bursting with nutrients and enzymes to assist me on eradicating tainted, malformed cells from my person.

And each time I take a sip, chew, and generally consume anything, that is what I am doing. I am not reading, watching TV, replaying my day in my head, wondering what I will do tomorrow, playing around on the computer, or anything else. I am eating/drinking and focused on every benefit each mouthful holds, nothing else. One could say I am being ever so scientific about this, as I am approaching this along the lines of the law of conservation of matter, where nothing is created or destroyed, only its form changes. And with that I am consuming abundantly nutritious food bathed in cancer fighting attributes, and as I take these in they overtake and replace the maligned cells with cells glowing with radiant health — glowing so brightly, I envision just the light cascading throughout my body blinds the cancer cells, further stunting their growth. And with each bite, and each breath I take I am healing myself, for I am healthy.

And that is what I wrote 150 days ago. To this regimen above I added daily mixed of some of the most noxious Chinese medical herbs vetted by three herbalists. Upon discovering that the hours between 10pm and 2am are the most prime hours for healing based on circadian rhythms  I also opted to do everything in my power to assist those that by being asleep during those times. And most recently, I have integrated practicing Qi Gong and absorbing the healing effects it provides on a near daily basis. And tomorrow, Jan 2nd I will have my vital tested to see the successes of my endeavors.

Results: forthcoming.

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On Cynicism, Sarcasam, and Sincerity

So it occurred to me recently that this blog is near absent the sarcasm/cynicism which I am fairly well known for. I would be lying if I said this was intentional. I would also be lying if I said it did not bring quite the smile to my face — something I most certainly am not known for (well more of i used to not be known for, as smiling comes far easier these days and is no longer a reflex, and far more just a natural state).

As pretty much all my long-term friends can demonstrate, I am quite drawn to those with an urbane wit and who can dish out the sarcastic barb like a Pez dispenser upchucks rectangular, chalky, not very good candy. And, well I can sling it right back in spades. So much so, many people began to think, or perhaps always thought, I was incapable of being sincere. I would say something, in total earnestness, and people would have no idea if I was telling the truth. I would discuss why I loved something and people would think I was lying, rolling my eyes at them, snickering at their naivety, etc. I have long heard “I have no idea if you are telling the truth or taking the piss,” or some such response.

Once upon a time, this was very funny, and lead to many contorted looking faces and much eye rolling from me. But as it built to people always being sure I was being my typical ass self and never taking what I said seriously, well I realized I had a problem. One night, a few years ago, out with friends, I even remember having a long conversation about “what if my sarcasm is sincere?” Much to my dismay at the time, they rightly were having none of it.

It was about then when I realized I really was unsure how not to be my snide, snarky, sarcastic self. I also equally realized it was a total coping mechanism. It was far easier to be the detached cynic with nothing to root for/on than admit what I wanted was hard, difficult, or impossible. It made me sad. But, I did not set out to change this. It was the foundation for the self I created, and I know that by uprooting it, I would change myself irrevocably. And at that time, I was not ready for such an undertaking. I was not ready to have to change the sense of who I was.

Apparently, that has changed, at least in my writing.

In fact, this newly found sincerity is not entirely new, it was there when I wrote only for myself (well most of the time). When I did not color my words to disguise my failings, as I did not worry if others saw them, because they would not. And in fact it would sometimes come out to the world too (that 25 things list I did on FB years ago for instance), but never in such a concentrated manner that has occurred here..

So I wonder, what is it about the written word that allows me to embrace sincerity when for the most part my spoken word is still laced with, if not tethered to, cynicism and sarcasm? Is it that I do not have to look in another’s eyes while I am communicating? Is it that I know sarcasm’s power is fleeting and is only entertaining as it splashes over things abruptly? Is it simply the difficulty of conveying sarcasm though writing? Is it something far more complex or even just something outside of my knowledge base?

Recently, a newer friend of mine was looking through the pictures on my FB and told me later that she saw in many of my old pictures a person she would not much like to meet. It took me by surprise, as I thought, “who would not want to meet me?”, only to think of how I used to behave and how quick I was to rant and dismiss. Hell… I thought, I would not much like to meet that person either. And this got me thinking… sarcasm and cynicism as a default option is nothing more than toxicity. And not the kind with a quick half-life, as my friend could see it reverberating, radiating, from the past in my pictures.

And while I have been working on disentangling myself from the the lure of this default response for sometime, this prompted me to do so with even more urgency. I also realized that since I can do so here, I should have no difficulty doing so elsewhere, as in I know how to be sincere as the default option, so I do not need to learn a new skill. I just need to make it reality.

And that is what I am committed to doing. Making the sincerity from the blog, from most of my writing in general, leap from page/screen/etc into the real world. I will not say I am smothering the sarcasm/cynicism in me entirely, it will just live on in quick bursts, at proper times, and never strangle me with its toxicity again.

I will not erase these responses from my person entirely, there are still times that they will come out, but they will be rarer and brief. To do this, I will need to contemplate what and how I respond to things more slowly. This picture pretty much sums up what ideally will be how I respond to people:
THINK-before-you-speak

If these are not at the root of sincerity….

And don’t you feel good when other’s communicate to you in this way?
I know I do – good and respected. So how can I justify not respecting others the way I want to be? Simply put, I can not.

Now be honest people, who finds my embarking on this journey humorous and/or incredulous? Or something else of equal disbelief? Don’t worry, at times, I too find it strange and baffling, but also equal, if not more so, parts empowering.

But really other than a few short term laughs what positive results has this ever so detached sense of self brought me? Is it really in my best interest to veil up my sincere self? Is it in the world’s best interest for me to do this? Is not the lack of connection to others one of the major psychological issues of our age?

In my desire to keep evolving into the person I want to be, this is not an optional step. This is a necessary step. So this is where I ask for you to hold me true to this, so if you ever hear/see me slipping, let me know. Help keep me honest.

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Writer’s block, the Immobility of Illness, and Where to go from Here

Ever since my surgery last October, I have been fairly silent here. Not totally, but enough to have made me wonder: will I ever update my blog again? This was by no means for lack of want or even effort. I lost count of the number of posts I have started and then abandoned, failed to finish. (Just for the record, having just counted the ones I did not just toss outright, the total is 76 posts started.)

Thinking about this now, I am reminded of what now must be hours of me staring at a blinking cursor, not having the slightest idea of what else to say. This has never, ever, ever ever, been a problem before. As those that know me well can attest to, I am not often at a lack for words.

It goes without saying, this is/was beyond frustrating.

So I started to investigate: what was swallowing my words, my voice. I first wanted to understand my muted state of being and then figure out a way to position it differently, use what was keeping my words and thoughts inside as a fulcrum to expel them, write again. Writers block had always seemed like just an excuse to me. No longer.  I get it.

Or perhaps, I am just looking at discovering my own excuses for feeling that I have had a total lack in the department of things to say.  Perhaps the process of treatment and recovery is so boring and so utterly stationary that it just does not compare to before. Perhaps there is an overriding shame of being snared by yet another malady that the pounding echo of a mostly blank computer screen sounds far better than all the gasps of air it takes me to obliterate yet another disease from my blood.

Perhaps, perhaps, perhaps….

As I am one with multiple advanced degrees in over thinking things, I can not tell you of all the possibilities I conjured to explain my silence. Mainly because I certainly can no longer remember them all, nor would I have the time nor database space to chronicle them all. That, and it really would not matter as I believe I have fished out the main reason: my outward behavior is echoing the most throbbing worry in my mind — I have no effing clue what I am doing nor what comes next.

I have spent so much of the past year floating, drifting, floundering, that even the grounding power of words, allowed me to establish no roots. Which is the height of irony, as I have basically established myself as a full time resident of Chiang Mai. Oh universe, you are such a kidder. You really are….

Awhile back I was messaging back and forth with my friend Slander (fairly certain this was his birth name, but you never know…) and I told him that the worst part of this whole thing – and by whole thing I mean stretching back to when I was first diagnosed with Lupus – is that I constantly feel like I am drifting in a deep sea of limbo, one where I get very wet, so wet that not only my fingertips prune up from constant contact with water, but all my appendages turn to flesh colored raisins. This limbo does not even allow me to guess what my next move/s should be. I know deep down this is an issue that everyone faces and has faced since time immemorial, as each choice flows before them, but  I can not escape from the idea that these choices seem to occur on something akin to freeway interchanges, where my current state seems to resemble living within an amorphous amoeba that is constantly shifting shape and structure. An amoeba fully uninitiated in freeway construction, let alone driving techniques.

Frankly, I feel tied to a fated outcome. And rather than grasp choices of free will, I find that I spend my time looking for oracles, even as I know damn well the likelihood of them not existing, yet choosing not to look for them even seems too like too much of a choice.

I feel forced, plunged into this ever lingering sense of limbo, like I am sitting in a dunk tank and after an constant barrage of balls lobbed from all directions, one finally hits the plunger and I splash! right into that watery existence, soaking head to toe, just to remind me that at any time, any sense of relief, when I think I have escaped the stasis of being kept in amber like a bug,  I have not even escaped the confines of the cage where this pool of despair looms below. Yep, there is that whole waiting game again, the fogged over horizon of having no clue when or where this path ends. The total absence of knowing. I know full well that this is my own manufactured hell, but all the same: I am snared.

I feel this coursing through my veins as much as the cancer cells that still remain. And that I first wrote that as cursing gives you a better idea of just how much this is effecting me mentally.

The other day I was speaking to a friend who knows someone very young, far too young (not even 30) suffering from breast cancer. My friend relayed her wish that it would either just kill her quickly or that she could just defeat it entirely. The idea of fighting a slow losing battle for the next decade or so just feels far too consuming. I understand this thinking. I COMPLETELY understand this thought process. It makes more than perfect sense to me. In fact, nothing makes more sense. The lack of knowing often seems harder than the actual fight to rid ourselves of an unwanted invader.

We are all equipped to deal with the illnesses in/of our bodies. Our immune systems will or will not be effective. What we are not as equally equipped to deal with is the mental side effects of this. We have a choice, deal or break. I have faced that for over six years now, and I have pushed on, refusing to break, even when that was seemingly the only option. But currently I feel far too amassed in this congealed limbo that feels far too much like quicksand.

This quicksand swallows words much like a pillow often consumes so many screams of teenaged angst and frustration. Getting words and thoughts down seems quite secondary when every bit of time and effort could be better used locating a way out, avoiding being swallowed alive, completely, by the limbo you so dearly want out of. And just treading water is beyond exhausting.

I started this in late march of last year. I kept wanting to update my blog, but there would be days when the most i could do was exchange a word or two. And I would celebrate completing just one new sentence. And then by May, I got to the point where I accepted that my words were hopefully going through a process of gestation, and stopped opening this and other semi-formed posts, waiting for them to be born. I have opted to leave most of this as I found it — though I cut out a good bit to be another post entirely. I also added a bit here and there to make it flow and make sense.

I know many people have complained to me about the silence here. And I really am sorry for the abrupt cessation of writing. But as you can see, it apparently was just not in me. And while I have no idea how often I will post here (my general sense is once or twice a week), I am now back in business. I have been writing, have found my words since sometime in the beginning of December (which would be nine months from when I first started gestating this piece. hmmm…..). At first I was sure it was a fluke, as I had just about given up on ever coming back here. But they keep coming.

And I welcome this with a huge sense of relief. And by huge I mean huge on a galactic level.

The next few days, I will post a few posts about this past year, and how i have been dealing with the limbo I describe above. For those still with me, please stay tuned. 

 

 

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Things I’ve Learned in my One Year as an Expat

Last week marked my first year as an Expat. And while I am still working on a far greater, more important post about this, I wanted to list some of the things I have learned in the past year.

Writing things down on paper and then transcribing them in my computer has been far more of a boon than I could have ever imagined.

While homesickness burrows deep under the skin, causing me to itch much like one with scabies, and often cores out my inner workings, even the smallest communication from friends is an amazing ballast.

After four months in India I was forced to ditch my oft held claim that I could easily only eat Indian food for the rest of my days. While I clearly still love Indian food, I crave variety far more.  Also, 5.5 months in India really makes you appreciate the joys of a simple salad — which are non existent in India.

Saying hello and smiling to others/strangers is a natural thing. My refusal to do so for 30+ years was pretty much insanity.

Bus rides in India often result in disaster. Examples: whiplash, a broken axle and sparks, lots and lots of sparks, running off the road coming down a nausea inducing winding incline, etc….

Every person you meet touches you. And if you can not learn something positive from each of them, I dare say you are clearly doing it wrong. (Yes, I know, who am I anymore????)

Ten days of meditation and silence will shift your being like nothing else. I highly suggest doing this post haste.

While I have long held that my life would make far more sense if I had been born French, I now amend that to say it would make even more sense if I had been born Tibetan.

That said, French pop > Tibetan pop. Lets not get crazy…..

The US health care system is even more fucked up that I have previously understood. In fact, I am fairly certain I will never understand how effed it truly is. I am VERY VERY VERY glad I have opted out of it, as only outside of it do I feel I can exist.

As much as this really, really pains me to admit, I often find comfort in those big huge Hollywood action movies that are played all the time in Asia. I always said I was above them and would never fall for this Expat trap. But…. damn it if I am not snared.

That said, an hour listening to my music grounds me just as well and I feel far far far less dirty doing so.

The only time I have ever been sure I was right and/or correct on anything is when I honestly admitted that I did not know something.

The way we use language is often far more important that what we actually say.

Skype is often as good as holding a friend’s hand.

I think when People look back on the 21st century they will see that the largest, most pressing issue we as a civilization had to deal with was creating meaningful solutions/outcomes for refugees. Currently we are acting like ostriches to this now, but it will be larger than anything else as the world slips into far more challenging climate issues causing untold displacement. AND SO MUCH WILL DEPEND ON HOW WE DEAL WITH THIS!

Living somewhere where I can not get fresh dragonfruit is no longer going to be an option.

Durian fruit is as putrid and disgusting fresh as it is imported. Still waiting for someone to create an odor based super villain named durian.

Watermelon in Asia is at least 379 times better than it is in the States.

Still more than AMAZED that one of the best falafel sandwiches I have ever had in my life was in Delhi.

42°C is CRAZY hot!

While this is not exactly new news, trains are totally the  way to travel.

The art of meeting people and saying goodbye to them in very short order is emotionally excruciating.

The act of not asking fellow travelers their names to try and cope with the above issue is not now, nor has it ever been effective. Frankly, it is more than a little foolish, sort of like eating drywall hoping to get one’s RDA of calcium.

People who say food poisoning does not exist or is only for people that have weak stomachs have clearly never been to India.

As my body continues to shrink, I have found that I best fit into tall women’s pants. I am officially a size 4. I am sure many of you will enjoy the hell out of that.

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My Birthday Wish

Yes, I am making a birthday wish this year. I have determined that since I am officially living in extra time and who knows how many more of these I may have, I have decided that I want to share my birthday with organisations doing what I think is great work. So my wish this year is if  any of you might support the awesome work of The Thai Freedom House in my name. I set the goal for $250. It is not much, but for this very hand to mouth, direct action organization, every little bit helps.

Let me tell you why I have fallen in love with this great organization in my time in Thailand. First it was the food. I feel in love with the food at Free Bird Cafe the cafe they run to support their education center. In fact, when I first heard of the cafe while in Bangkok, I just thought it was a great sounding cafe. And it was closed when I first tried to go, but once I did make it there I loved it immediately.

But my real love for the place grew exponentially when I found out just how much great work they were doing educating Shan Refugees from Burma and local hill tribe people, along with supporting refuge camps in the area. See, in Thailand refugees have to pay for school. And without The Thai Freedom House providing education for their students, well so many of these refugees would become part of a permanent underclass. And it is just that reason why Thai Freedom House was born, to ensure these students get and education to be able to succeed.

Just recently I was invited to see how successful they are when I got to see the graduation ceremony during the Shan New Year, two weeks ago. What impressed me the most was not the smiles on the kids faces, but the parents, who it seems totally understand the importance of education (such a difference from so many of the parents of the kids I used to teach in Brooklyn). It was a joy to watch the pride of doing well circulate from child to parent. The room that night was just magical.

My birthday wish is for more funds to teach more of these refugee kids and young adults so they can escape the permanent underclass status that many in Thailand seen quite happy to let them to fall into. I feel this is totally unacceptable. I hope you can see the importance of this and help them by wishing me a happy happy birthday.

So many thanks in advance.

And to see just how great one of their students are doing, check out this video of one of their students, Konchai, who is making inroads in the Shan pop world:

Just another reason why the world should be helping all refugees, thankfully Thai Freedom House is doing this to the best of their ability here in Chiang Mai.

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Immunotherapy

Today was my sixth immunotherapy session – sixth of nine (perhaps I should have waited till Wednesday to write this for that random Star Trek alignment…) sessions in my first battery of treatments. It is getting easier on my body as they progress, but still leave me quite walloped me each time.

The original plan would have seen them over last week, but my surgery wounds took a bit longer to heal than anticipated and then I was felled by a nasty sinus infection, postponing treatment even further. When they removed my entire lymphatic system under my right arm, my already compromised immune system took a few more steps backwards, as the lymph system produces the white blood cells that combat infection. At first this distressed me, but then I realized this is nothing really new, just the old normal a bit more concentrated.

I get my treatment three days a week. They plug me into a saline drip IV and add a shot of Rituxan. I also take some sort of generic antihistamine to aid the removal of the cancer cells — here is where I really wish I had taken some college level biology/physiology course to understand this. It baffles me. But they tell me it works and from what I have read, it backs them up.

I was told that it would take about three hours per session. I liked that, as there would be three, three hour sessions, for three weeks and would most likely take a battery of three treatment sessions to convince all the remaining cancer cells in my body to stop multiplying. I really enjoyed the confluence of all those threes. Only now it is taking four weeks for this first salvo and the actual treatment takes just over two hours to drift into my blood stream.

While I have a not so hidden affection for triumvirates (here is where I should probably thank my four years of Latin in high school, or better yet since we are speaking of triumvirates, here is where I genuflect to my four years of Latin…), this way seems far more organic and less scripted, like actors spontaneously  deviating from a script making their scene resonate with a sense of real life, one that causes the audience to inately hold their collective breaths, knowing the outcome is far from prescribed, prescripted. And to be completely honest, I find this makes me feel earnestly inspired if not optimistic at the treatment’s effectiveness.

The treatment itself is fairly uneventful. I sit in a chair, sometimes in an examination room, sometimes in the waiting room. It just depends on where they have space. As the medicine flows into me, I spend my hours reading and/or trying to tune out the Thai tv shows. A little more than two hours after being stuck by a needle the bag is empty and this is when the fun begins.

I was warned to expect some nausea, so I opted not to eat prior to my first treatment. This. Was. A. Mistake.

While the sky was clear and the sun felt like a ravenous bear six meters above my shoulders swiping its large mauling paws with sunburning claws at me, I swear I heard a clap of thunder at the same time I felt a bolt of nausea hit me in the songthaew on my way back from the hospital. I liken it to a bolt of lightning as my stomach felt electric, as if someone had plugged in a blender that burst to life since it was in the churn position. I had to get off, as I was sure I was going to puke.

I did not, but felt more than queasy all day. My decision to opt for a passion fruit juice, thinking it would steady my stomach, was far from my brightest moment. Acid tossed on top of nausea is a recipe best left alone. Please, heed my advice on this one.

The rest of my day included copious amounts of ginger tea, a slow KM+ walk back to my guest house and a date with general overwhelming exhaustion. I was feeling very unwell, but knew I was on my way to getting better. This really is such a strange feeling. It does not register innately, you have to think about it and push out what you would generally think was logical, then let it sit there, next to you, till you get comfortable enough to grasp/clutch it like a dear friend.

I am not sure if it was that first day or the next day when I realized the needle going into my arm, filling me with drugs meant to confuse the cancer cells coursing though my body, was very much like a candle wick. For it to work, it dips into my energy and comes alight with a vibrant flame burning all my energy away. I knew it would make me tired. But I thought it would only effect me on the day of the treatment. This assumption was very wrong.

So far it slays my energy till well into the next day. That first time it lasted till I woke up two days later. Or you know, the day I had to go back and get treatment number two. It was much easier that second time. I still felt pukey, but as I ate beforehand it did not last as long, nor was it as severe. It still wiped out enough that walking down the street was a slow arduous process, but I was able to have a normal dinner and spend the day reading, after an initial nap.

Then on this past Friday, after treatment number five, I even went to a Thai course and then rather than take a nap, like my body was telling me to, I opted to celebrate Shan New Year (Happy 2106, by the way) with some Shan friends who live here in Chiang Mai. While I regretted it quite a bit the next day, it was well worth using the majority of my weekend’s energy quota for an experience that was unlike any other I have experienced before.

In one week this first round of Immunotherapy will be over. And I am hoping I feel far more like my normal self, as these past few weeks have left me drained in a way that mimics the worst of my Lupus flares. Needless to say, I’ve had much better months than this past one. And I look forward to better ones ahead.

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Notes on Surgery, One Week of Bed Rest, and General One Handedness

Morphine is a hell of a drug. I had a dream that dogs with zebra heads for legs – yes, mouth where the feet should be – were chasing me. I had a name that I yelled at them, but no longer have any idea what it was I called them. It also destroys an y sort of an appetite.

Lymph node removal, no matter how simple and fun it may sound, is anything but fun.

They found another tumor growing under my arm and decided to rip out the whole lymph node system there. Now, until I can exercise it regularly, I will have to get it drained every three or four days. I will spare you what this looks and feels like. Just know you want to avoid it.

I came back to my guest house just over 24 hours after my surgery (20.10.11) and proceeded to not leave guest house till today (27.10.11). I spent 95% of my time flat on my back on strict bed rest.

When I underwent chemo, I spent three weeks on bed rest. I also had no desire to leave. By day four this time, I was erupting to move and get out. The general pain and difficulty of moving stopped this desire till today, where I went to eat and walked around the block.

The more disgusting thing during this whole time: while on my very slow walk today, I saw advertised coffee banana shake. Please note, I watched them drain lymphatic fluid from my arm this week as well.

For reasons I do not understand, even though they only removed two tumors from my groin and not the whole lymphatic system, my leg hurts a lot more than my arm. Even a week later.

I am typing this whole thing one handed as my right arm is still quite incapacitated.

Properly putting on my leg brace one handed is nearly as futile as Wile E Coyote’s pursuit of the road runner.

I am well on my way to ambidextrousness.

Combing one’s hair with one’s left hand… lets just say I really do not advise it.

Sadly, Gravity’s Rainbow is no easier to read while you are high on opiates than if you are stone cold sober. No one has really read this all, right? I will do my best to get though it all this time. But…

In fact reading anything, well the comprehension part, is fairly impossible while highly dosed on morphine. Now that I am on codeine instead, I can read with far more ease. Still, Gravity’s Rainbow… I hate to admit this, but this book seems far smarter than I.

Not being able to shower from Friday to Monday in ever so humid and muggy Thailand is something that is at least akin to Hell, if not the place outright. I also found out I will not be able to wear deodorant for a month, be glad most of you are at least a continent away — this will not be pretty.

There were many more of these that I planed to write over the past week, only they are now in a morphine induced memory hole, alas. No more opiates for me, please.

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