Sometimes, Good News Changes Everything

I loitered in my room a bit longer than I ever should have. Well, if I was planning to make my appointment on time. To say I was nervous about what I was going to hear would be quite the understatement. It was nearly 12:30 and I had yet to leave my room for the day. I did not go out for meditation. I did not go out for breakfast — I was too nauseous to eat. I was almost too scared to find out the news, but it turned out I was more frightened to not to know.

As I walked down the street to find a ride, at a brisker pace then normal, I found that Bjork’s song 107 steps from Dancer in the Dark taking over my head. Yes, the one where she counts down the steps to her execution. I was obviously not expecting good news.

I was expecting the worst news possible.

The night before was filled with restless sleep, anticipating the worst. I was sure I had prepared myself for the news, steeled myself to hear the words that would crush my spirit and whittle me away to nothing. But I was utterly terrified of just what my reaction would be. It is one thing to anticipate, to speculate, a reaction, it is another thing to have to experience it. The prior week I keep feeling my brave facade starting to crumble, my sense of optimism shifting to outright fear.

But all of this was for naught as the crippling news I was positive to receive, the one my doctors told me would be a death sentence, did not come. The spinal tap found no occurrence of cancer in my spinal fluid!

As soon as my doctor told me this my temperature dropped and a wave of relief took over my body and I shivered like a 1/2 gallon coffee can loaded with black-cat fireworks. And then the tears started. I had expected them. I have become quite acquainted with them ever since I informed of the possibility of the cancer. Only these tears were quite unlike all the others I had spilled of late. These were joyful tears, buoyant tears, rather than tears like an iron anchor trying to drag me many fathoms below. Tears that felt like I was inhaling pure oxygen as they became entangled in my bread.

I was quite unused to them. Boy were they welcome.

As I said in an email, they were like crying a stream of diamonds. But I was not exactly sure where these diamonds came from. I was just ecstatic they were there. As I have thought about it more, I think they were the fears I had been harboring inside this cataclysmically tense body. And as each one ran down my cheak it was as if they were being expelled and replaced with something close to euphoria.

I say something close, because I am not there yet. While this was amazingly welcome and encouraging news, I am not anywhere close to out of the fire yet. My lymph nodes are still polluted and corrupted with this cancer. Friday’s grand news was like winning a battle where and when the enemy fails to show up or just concedes, to fight elsewhere later.

That may sound like I am making light of it. I am not. It has fueled me with a sense of triumph that will not soon be forgotten. I just know this was a simple battle and not the war. That war begins in earnest Thursday, when they remove these damn tumors from my system. And then in two to three weeks the real fighting begins with treatment, which I will detail in another post, as the pieces are still being finalized. Chemo will not be a part of it, at least not initially. Right now it is totally off my table. I can not go through it again. I just can’t. And while if you saw the state of my hair recently you might say I was making the wrong choice here, my kidneys tell a different story.

While my walk away from my guest house was sound tracked to a song for an execution, Miss Li provided me with a delightful song for my return. And yes, I do tend to think in songs. I returned to my room, sent some emails, went and got some food and then proceeded to sleep for the next 20ish hours — apparently that nervous tension that had been keeping me up for most of the precious week finally joined me in hibernation. A very welcome development.

Finally with this amazing news, I am now more prepared to battle this thing. And win.

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Tapping the Spine

In my mind I can not think of a spinal tap with out thinking of ouroboros. It not just that they are removing these primal fluids from your back, which I think of as akin to embryonic fluid, its that they make you curl up into the fetal position, as close to the way you laid in the womb to remove all of it. It is the closest I have ever felt to being back to that which we all came in my entire life.

And well then there is the pain, as I imagine eating one‘s own tail would smart quite greatly. The pain and fear they instill in you — “if you move when the needle is in you, you could be paralyzed.” “Don’t move now!” — joins hand in hand and pretty much jointly clotheslines you. A clothesline you just can not get up after.

There is nothing that can prepare you for a wide gauge needle, think 3-6 mm wide, that slides between two vertebrae and removes this life fluid from your back. Nothing. When they take your blood it is like a pin prick and it is over. Yet, I still wind up passing out three out of four times when they take mine. A spinal tap needle feels far more like a badger’s claw ripping, boring into your spine. And unlike when they draw blood, you feel it inside you the entire time as your body turns to brick, ever fearful of moving, of that possible paralysis. Your brick body registers this railroad spike like needle acting as a lightning rod absorbing a huge bolt that would make night appear as day for those seconds it hung in the air. Every second it is in you, you want desperately to pull away, flee to another room, another country, but you can only exist as a motionless fetal mass where your only movement are tears flowing from your eyes like it was high tide. You would wail too, but that fear of moving is too strong.

It lasts for just over a minute all told, but time seems ever so fluid with a needle the size of the western suburbs of Chicago stuck deep within your spine. This minute plus feels far more like 20-30 minutes of torture. The kind where there is no doubt: you would talk, tell them anything. You might not tell them the truth, but you will tell them anything to get them to stop. Anything to get them to stop….

This was not my first date with a spinal tap. In forth grade they thought I had meningitis. They did one then. I had never cried as much in all my previous nine years as I did that evening. And for the past few days, I spent a great deal of time reliving that experience. I tried not to. I couldn’t. I am simply amazed that something that occurred nearly twenty years ago could be recalled so vividly. I remember colors, smells, textures, the nurse’s name, the way the light shined of his badge…. Very little of that day has been erased from my memory. I wound up telling myself, convincing myself, that this time would not be as bad. It would be better.

It was not.

Whenever they stick a needle in your spine it simply does not get better. It can not. It is awful. And just like before they lorded over me that movement – Any Movement – could paralysis me. I guess they have to, but this is not what anyone in such a position needs to hear.

There is no position as defenseless as the fetal position.

When it was finally over, when they unplugged the needle, I was asked to roll over onto my back, a position I had to stay in for the next six hours. Only the brick I had turned into was not dissipating. I had solidified. I had cemented myself into the tightest ball of a fetal position I could manage. I could not let go.

You would think all my tears would have lubricated my joints. They did not. The staff had to help me extend my legs and roll me over. Thankfully, I could feel their hands, or I may have started to believe I had moved inappropriately and was paralyzed. Finally, I just lay there on my back on a flat, hard, thin mattress, breathing and crying. Still a bit too afraid to wail.

After I lay there motionless, for what seemed like an hour, I finally started to move again. I also noted I was quite hungry, as I had not eaten a thing in well over twelve hours. Only they would not bring me food, just tea. They said caffeine helps replace the missing spinal fluid. Yes, I gave them the same cockeyed look that you most likely just gave the logic in that sentence. But who am I to argue against tea consumption.

For the most part I spent those six hours flat on my back meditating and sleeping.

I know there was a chance I would have to stay over night. If the wound did not stop bleeding after six hours I would have been admitted for observation and my safety. Thankfully, when they changed the dressing in hour four or five it had scabbed over effectively. I really was not looking forward to spending all night on those thin, hard mattresses.

I remember when I was nine the results were ready within hours. I did not have meningitis. Am I remembering correctly though. That day was full of trauma, from puking up a small ocean in front on my class to being rushed to out of school on a stretcher and in an ambulance to the eventful spinal tap. And while I have crystal clear images of what happened in my head, how trusting should I be of twenty year old memories?

This time it seems it will be days till results are ready. I am to return on Friday to get either crushingly awful news or news full of relief — I can not even begin to tell you…

I can not lie. I was really hoping to know now. I was hoping to walk out knowing my fate.

But fate is the wrong word. I have decided to fight this no matter what. Even though the western doctors tell me that if it is in my spinal fluid, I am as good as dead. I am refusing to see this as my only option. They can view me as untreatable as they wish. I just am not going to go along with that reductive, limited thinking.

I can’t.

My view is while it may be hard to defeat, it may be impossible, and while I may not be successful in battling it, I am going to wage war against it with every ounce of vim, vigor, and vitriol I have.

My Tibetan doctor believes she has a treatment that may work, that I can enlist in this battle. And I think I would be the largest fool ever if I choose not to try it.

I refuse to give up.

On my long ride back to Bangkok from Laos, I was speaking to an Aussie, who made the whole eventful journey with me. When I told him the reason I was visiting a Thai hospital, why I had to get to Bangkok on Friday, he said, “that is really very heavy.” I agreed with him. How could I not? But I also told him “but it is not going to kill me tomorrow.”

And just like that, I have a new phrase I will say every morning when I wake up. And even if this cancer proves me a liar somewhere down the line, it eats me whole, like a snake eating its tail, so be it. I am pretty sure no one will write liar on my future nonexistent tombstone for this slight. I have no choice to believe this if I want to effectively fight this. If I want to win.

I am waiting to find out how bad this is tomorrow to plot out exactly how I will march off towards slaying this beast. I have it basically figured out, taking into account all the possibilities. Well, I have it all figured out in my head at least. But…. How will those words that I expect to hear really effect me?

That said, three weeks ago I was deep into denial about all this. Today I am preparing my armory to take it on. Quite a shift in a little more than twenty days. But I am now prepared and shall give it my all.

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A Spectacularly Piss Poor Day

So last Monday I called my doctor. Yep that is all it took to make my day totally, utterly crap.

He confirmed exactly what had been suspected: I do in fact have cancer.

My journey to Laos the night before, with all the twisting and mountain climbing, sort of made me feel like I was running away from bad news. That I had outmaneuvered its clutches. That was just wishful thinking.

The news caught up with me, ensnared me, left me hanging from a tree. It brought tears to my eyes and despair to my face.

After I got the news, I left my guest house and walked abut 100km and met up with the mighty Mekong river. The mattress might have been crap and the room small, but the proximity to the Mekong for the price was fantastic.

I watched the sun shine though some clouds as it burrowed beneath the horizon. And just let out a full scale sobbing. It is what it is. But what it is sucks.

A lot.

There is something about rivers. I know I need to be by water to feel right with the world, but it is far more rivers than oceans. Watching the water slowly drift by is something akin to paradise. The Mekong actually strolls, like a dandy on a promenade. Only today I felt overwhelmed by it all. Like it was my life passing before me. Like I was an immovable object and the waters floating by was everything, like trying to grasp a handful of air. Nothing. But it felt like this nothing was eroding me, from inside and out.

After I watched to sun dip below the horizon I went to find something to eat, as the last thing I ate was a crap sandwich at 6 am when they peeled us out of the bus and into the Volkswagen beetle sized bus — i am not joking, the wheelbase size is the exact same. Thirteen people in this for 20KM is god awful.

I found a charming little Frenchified Laos place and ordered a noodle dish. And a bottle of wine. Here is where I proceeded to get drunk. Add in the whiskey a bit later and here is where I got hammered.

I regretted about the first 30 sips, thinking about my kidneys… But it plugged my tears. And by the time I was shaking out every last drop of wine from the bottle I had near forgotten the shit-show Monday I was having.

Lets just say Tuesday morning was AWFUL. Reality plus an epic hangover, something I have avoided for nearly five years. That night I was sure drinking would make it better, but… yeah… not so much.

Why does this feel finite, like it is just not worth fighting? But the Lupus and kidney failure seemed something to take egregious arms against? Ever since I heard that doctor say cancer, it is like someone was playing Jenga with me, only every time s/he removed a chunk of me, it was just gone – no trying to placate reality by putting it back on top, in a desire to balance reality with a game of wooden blocks.

But I will fight, with everything I have left. I even decided that if they find cancer in my spinal column, which they say would make it incurable, I will still fight. They also told me my GFR numbers would never climb. They did. I proved them wrong. And I hope to again, if it comes to that.

I am not ready to die, now or in the near future. But still it feels finite. Or maybe I have finally run into the place where I that sense of adolescent immortality has worn off entirely. Or, you know I am rationalizing again.

This morning I woke with a phrase in my mind. It warmed me greatly, nearly as much as the Mekong has soothed me this past week: “Cancer, you will not claim me.” And I finally started to feel my metaphorical fingers wrap around the bastard cancer’s neck.

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Ten Things

To help keep me in good spirits these days, a huge task as I wait for my cancer biopsy results (of which I heard nothing this past Friday, and am now expecting to hear something on Monday), I’ve been listening to this song a lot lately:

I really think this song explicitly expresses exactly how we should live: divest ourselves from the things that make us unhappy, unfulfilled, etc and embrace and invest in the things that bring us joy. I spent far to many years trying to postpone or even deny joy — going so far as to call it foolish, juvenile, and frivolous. Yeah, I know…. lets just call that my mentally ill period. Thankfully, I have moved on from that kind of madness.

So, as I prepare for the worst news possible, I have taken Paul Baribeau’s advice and created a list of ten things I want to do before I die. At first I was going to wait till I had gotten the news on the biopsy to compile this, but… I then realized this is the sort of list everyone should have as an ongoing target. Life is finite. We all know this, but when one feels that horizon speeding up, about to pounce on him/her, trust me it really makes this fact reverberate, much like a bat’s wings repeatedly smacking one’s face.

So here are things I want to do, see, and accomplish before I float away from this existence. I also challenge everyone who reads this to at least think of their list. And then to figure out ways to make the things you want, you crave, possible, or as Mr Baribeau so succinctly states: “then go do them.” Yes, I know I might never finish this list. Or, I will. But, I plan on adding another item each time I do one of these things. These are just the 10 things I want to do most before I die. And this is a public reminder to myself not to forget them and I urge others to remind me of these when times get dark. I promise to remind you of yours.

My goal is to get to all these. So here they are in no specific order, aside from number ten, I’d like to get to that one last. Please.

1. Learn to play the ukulele.
I have strummed on a Ukulele quite a few times and thanks to all the tablature charts available online I have even been able to play a few songs. But I can hardly say I know how to play one. That said, I really want to learn. I want to be able to play any number of Magnetic Fields songs and I even have a few of my own compositions I’d like to pen. I even think I’d sing them in public, for actual people, or at least post them online for public consumption, my terrible voice be damned. Perhaps someone out there is crazy enough to find it charming even.
I even went to price them the other day. They are amazingly cheap here, but the thought of carrying one more item when I travel scared me off. It seems like it is time I work to make this fear evaporate.

2. Try my hand at stand up comedy.
I am sure this causes many of you to scratch your heads? “But wait, I thought you hated comedy???” Okay, bear with me for a second. In some class in ninth grade I was asked what I wanted to be when I grew up and I said, and meant it, “a stand up comic.” This got more laughs than anything else I said in that class all year. And I am pretty sure I have only said it out loud once or twice since then.
See, I have never been against things that are funny, I revel in them really. I just find that things that are written to be “funny” far too often seem forced and are the exact opposite of funny when acted out or spoken. I would love to pick out a subject and rant away about it spontaneously letting all my humor come out. I really have no idea if this would work, if my demeanor and take on things would translate to laughs, but I sure want to try.

3. Hug an elephant.
Just how much do I owe this one to my early love of Babar? I have no idea. I will say I am convinced that elephants deserve a royal status on this planet. Read into that what you will. I also quite vividly remember the dream I had a few years back where I had to arbitrate an end to a violent skirmish between Babar and Tintin. I wandered around for days floating after that one. And I have seen countless elephants since I left the states, but always conscripted into some labor and/or to please the tourists. I swear you can see tears in the eyes of these elephants.
They are such noble beasts and rightly deserve to roam free with each other in the wild. Man has made that nigh impossible for most. There is an extremely reputable elephant sanctuary a few KM away from where I am currently staying, but they frown at my cane, as elephants in captivity are often beaten into compliance with sticks before they arrive here.
Add all this together and I am pretty sure you can see why I would love to hug one. I need to figure out a way to do this. I will figure out a way to do this…..

4. See a tiger in the wild.
If you thought I would make a list of 10 things without at least one feline-centric request, I dare say you do not know me very well. Facts are Facts: cats are the best thing in the world, bar none. Nothing else even comes close. When I was a kid who would go to zoos everyone else seemed to love the monkey or snake houses. Sure I enjoyed the monkeys and would have enjoyed the snakes — if they grew legs!, but I was all about the big cats: tigers, lions, panthers, etc. I would have paid every ounce of money I had to go hang out with them. Again, here in Thailand seeing a tiger is amazingly easy. There are countless places one can visit and see tigers in cages or drugged ones you can touch, feed and even cuddle with. I am fairly certain I would enjoy stabbing myself repeatedly with a rusty, staff infected iron rod rather than do that. Seeing one in the wild though would be 100% pure bliss. When I attempted to do this in India, the wildlife park I wanted to go to was closed for the week for the annual census tiger census count. I need to plan better.

5. Visit Machu Picchu.
As I’ve said before, Machu Picchu is the single place I want to visit most in the entire world. It has been on my to do list since I was 12. Still it seems like an amazingly difficult one to accomplish, what with its elevation, and difficult to navigate terrain. But really, if I found out I only had one week of life left, I would travel here post haste and invite numerous people to take it all in with me.

6. See the Northern Lights.
I remember when I was in college in VT I really wanted to see a moose, a catamount, and the Aurora Borealis. It was not till the night before I graduated that I finally saw a moose, in one of the most amazing synchronistic literary occurrences in my life. I never saw a catamount nor the Northern Lights. The catamount seems fairly impossible to see, as they might be extinct, but the Northern Lights seems doable and quite amazingly magical at that. Also, totally random thought, but what does someone who is color blind see when they witness them? Are they even able too? Not that I am color blind, just curious?
And if I could work in seeing a polar bear in the wild at the same time I am pretty sure I would dance a one legged jig.

7. Ride a bike again.
Ever since my leg went to shit, this has been the single most compelling thing I have wanted to do. After the chemo there was hope that my bone would get stronger and upon hearing this I just thought ever so hopefully about riding bikes again. Sadly, that did not come to pass. The brace I wear every single day to allow me mobility, in fact inhibits my mobility. There is a punchline in there somewhere, I am just unable to see it. My brace does not allow my knee to bend much more than 90 degrees. Far too little needed for peddling. While I was in Pondicherry I even tried to ride one after removing my brace. No dice. Either I need a new brace that allows a full range of movement, yet still gives me the support I need, a steel rod attached to the bone in my leg that might possibly allow me to walk normal again, or some sort of bike that is only peddled from the right side.
I am thinking the first option would be the easiest. I guess I need to start pricing and trying on new braces.

8. Travel from one country to another on a boat.
I am not talking about riding a ferry from one side of a river to another here, but a boat in the ocean. I have no idea why this appeals to me so much, but it really does. When I left India for Thailand, I sought to find a way to make this happen only to be utterly scared off due to price. There is just something fantastically awesome about a voyage at sea. Perhaps I just want to connect with my ancestors who left Europe for the States and that new beginning. Or maybe I am just attracted to the idea that they were wanted criminals on the run from the law. Maybe it is just my love for Moby Dick or that I saw Mouse on the Mayflower one too many times. But traveling by boat — please note I am not saying cruise for a reason — calls me ever so sweetly, like a sirens song.

9. Skydive
This one is the absolute scariest one on my list. I actually almost left it off, due to my fear. See, I am not afraid of heights. Not at all. But… when I look straight down from anything above the sixth or seventh floor, the world starts spinning and I am captured in vertigo’s grasp. I can look out just fine, but once my glance aims down to the ground directly below, things start going screwy, the room starts spinning, and I freak the eff out. This never happened till I had a massive ear/sinus infection during my junior year in high school. Before this, I had planned to do this before I left for college. But once the vertigo started, well… I shelved my desire. It did not go away. It just seemed impossible. So even though it brings with it about a metric ton of fear, I still want to try it. Desire is funny sometimes, eh?
Who knows if they will even let me due to my stupid leg, but I sure need to at least try.

10. Not to die in a Hospital.
I mean, come on who does. But this is really wide and vivid in my mind. In high school I pushed food to patients in a hospital and saw countless people die in their lonesome beds and have never, ever wanted that to be any part of my life. This one is difficult, because unless I take matters into my own hands near the end, I do not see how I avoid this. But if I have my way I will, on both accounts. This does not mean that I plan to end it all next week — quite the contrary! — I have never wanted to live more than I do right now. But…. when the time comes I hope/plan to end things on my own terms with as little pain as possible.

And I am adding an 11th, only this one will never go away: Ensure everyone I care about knows just how important they are in my life and how much I love them and cherish their friendship. Regularly. I keep forgetting this one. And frankly, that is totally unacceptable. I will be better at this. I promise.. “Because right now all you have is time time time yeah/but someday that time will run out.”

Posted in conjecture, i want to live, rumination, travel | Tagged , , , , , | 5 Comments

Things One Thinks While Being Cat Scanned

I am not sure how, but as I was resting in the cat scan machine yesterday I had a marvelous thought. I kept thinking about one of the major tenets of Buddhism, “what one thinks, manifests.” And how in no way shape or form did I remotely think about cancer, well at least how it pertained to me. So why is this visiting me now?

Then for some reason I thought of my grandfather whose sole desire for nearly his entire life was to see the century/millennium change. It is what kept him going after my grandmother died. Amazingly, he did this. Sadly, it was attached to machines in a hospital. But he made it happen. In fact, he made it into the first two months of 2001.

As I was thinking about this I realized that our thoughts do not have to manifest right away to be true. Sometimes it takes a lifetime, like with my grandfather.

So I started to wonder if thoughts from years ago, when I was was far more damaging to myself, when I was pretty much a cancer to myself, were finally taking root. Or rather blooming, as the roots would have taken root years ago. “This seems quite possible,” I thought to myself as I caught myself nodding my head in agreeance.

Then I took all this a bit further and started to apply the lessons I’ve learned in meditation. The things that block us, inhibit our growth, come to the surface as they get ready to pass on, and leave our life. These cravings and aversions that we cling to, that we try and build the foundations of our lives around are ever changing and pourous; thus, leaving our lives in turmoil. So perhaps though meditative practice I engaged this tumor, the origins of it and let it be known that it was no longer nessesary, it no longer had right to claim my body, my life as home. And thus, it bubbled to the surface so it could be removed. Which basically is a direct metaphor of exactly what my life has been for the past few years — ridding it of the pollutants.

I’m not trying to suggest there is not going to be consequences from my lifestyle and general self-destructiveness from years back, but I am glad to get the chance to remove this from my body rather than let it continue to fester unaccounted for deep within me. I am still pulling for benign results, but I can use this train of thought to avoid the utter despair that has been clouding over my life these past few days. And there is something awesome about that.

Now, I have to be honest and also say that not all my thoughts while I lay there were of this level or even beneficial. For instance I also considered how Grease would have been so much better if it had been about knights rather than greasers and called Summer Knights. Yeah… I am going to totally blame that one on the lack of sleep from the past few days.

As for an update: the cat scan found a total of six enlarged lymph nodes. Thankfully, nothing as such was discovered in my organs, as this would have been pretty much the absolute worst finding possible. The news was not all flowers and juggling acrobats though, as the nodes were found in my right arm and left groin, meaning that if they are cancerous it already puts me in type 3. What this means is that it is not localized in just one lymph node area (the best case scenario outside of it being benign), but flowing about throughout my body, which is a pretty scary thought. But all this is moot till I get the results, most likely next week, but quite possibly Friday.

The way I am looking at this is I did not get bad news today. Therefore, it was a good day. Sure it might be coming, but that is not now, and I am better for it.

Posted in i want to live, things I've learned | Leave a comment

The Big C?

Getting the News:
In his Thai inflected English, he said, “it looks an feel cancer.” as he pinched the ping pong ball sized growth under my right arm. It hurt and brought tears to my eyes as he squeezed it. Or were they from hearing that word? No it hurt when he touched it too, but that word just made the tears fall out faster.

How did I miss noticing this all this time, I wondered, as I watched his thumb roll back and forth over the unwanted mass. I kept thinking where or how I could have noticed it earlier and why I did not. It consumed all my attention. Basically, I was ignoring his words, trying to erase the ones he had said earlier, that last one mainly.

But as the conversation and exam went on, as hard as I tried I could not push it out of my head. I just could not believe it. Refused to believe it. Even as we scheduled a Cat scan of all my glands and a biopsy, it was just too difficult to believe. Too much.

Was Lupus and Kidney Failure not enough?

I left the clinic dazed. Flabbergasted. I was in no way prepared to have heard what I did. I had an overwhelming need to throw up, but realized the bile I wanted to expel was in my arm, not in my gut. I just wanted, needed, to sit in the “courtyard” of the hospital and cry. but this is Monsoon season in Thailand and the rain was no joke this day. So, I just staggered out, forgetting the rain poncho in my bag, quickly becoming waterlogged.

Cancer.

Ever since I quit smoking 15 years ago, I have done everything to avoid this. And now, as soon as I heard the word, like Thor’s hammer crashing down on an anvil, as much as I simply could not believe it, I knew in my bones there was truth and power behind it. Just like when you slip and fall and those moments right before impact where you think about just how much this will hurt, not because you want to but because you are knowledgeable that it will, I heard this sort of truth in his words.

Up till then I assumed it was something like the ganglion I had on my wrist throughout my early years of high school. In fact, had it not caused pain to lift my hand above my shoulder, I most likely would have accepted it as no big deal.

Now….

Yeah, I’m a mess. I need to investigate glandular cancer, as the doc here was hard to understand on the subject. I am pretty sure this was more from my state of shock and utter disbelief than from his English, as it was very good up till this point, even if he did leave off endings from words, it was easy to understand him.

My mind just choose not too.

Day 2

Lymphoma

I know I have heard that word before, but I am not sure I understood it to be cancer. but it seems if I do indeed have the big C ths is most likely my curse. Cancer of the blood, which infects the glandular system. Blood. That corrosive element in my body that is so key to life in most living beings, but seems so intent on shuting me down, diminishing me, making me quit.

First my white blood cells tried to attack and eat my kidneys. Then my kidneys can not filter my blood effectively. Which, well, most likely leads to… well.. unclean blood which bursts forth with “I am become death, the destroyer of worlds”.
Yeah, I’d say I have some issues with blood.

I guess I should have seen it all ahead of me when every three out of four times I get my blood drawn I pass out. Yep. That is me. The guy who has to make sure smelling salts are around before the needles come out, as once I see the needle, I start to stop breathing. And when I was a kid, I literally would have to be bound with straps, like Frankenstien’s monster, into a chair or onto a table before a doctor could take my blood. My mother even tried to buy me off with toys or comics if I would conceed without the straps. And as much as I loved toys and comics, well lets just say I paid for all mine.

And now, as I write this I am stuck thinking of a certain Concrete Blonde album, Bloodletting. Well that and I now have an urge to drain all my diseased, rotted blood and replace it with something that functions far better, like pop music.

I am certainly traumatized by all this. It feels as if something in the universe is out to get me. I simply can not divest myself from that idea. I round a corner, escaping one “trap”, only to fall into another. The standard metaphor for autoimune disease is that your body is trying to kill you, trying to commit suicide without your concent. Well, I have to say I now sort of think it is not just my body that wants me dead, but the universe. I just wish there was a purpose or meaning to it all that I understood.

I spent quite sometime last evening trying to understand lymphoma. And frankly, I am not there. Yet. There is Hodskins and non-Hodskins, where there seems to be a sympathy of possiblities, or better yet probalities. There is not easily understood cause and effect here. There is no easy “cure”. Just like Lupus, they try and force it into remission, but with chemo or radiation rather than steroids. Two overwhelmingly destructive forces that I will opt to shy away from. My body is in no state to withstand that blitzkrieg, that onsluaght, again. Will just removing the mass solve the issue? Is it just one mass? Has it spread through out my body? Is it even cancer? These questions explode in the same way the overly conspicuous fireworks danced in the sky, filling it with perhaps more light than the sun, at the hand over of Hong Kong.

And my next course of action, whatever it will be, burrows away through the rest of me. What will be called upon me. Will this diminish my 5 year sentence, the one that a few months ago seemed far, far extended — now nothing but a sick joke to me these days? As soon as I heard the word I choked. Not on the idea of Cancer, but on the notion I have entered the epilogue of my life. Even when given my 5 year sentence I was not overcome in such a way, while the weight of the words in both cases seemed similarly oppressive, I am still on the floor from this one, somewhere between the fetal position and paralysis. And have absolutely no idea how to get up.

Day 3

Rather than sit around helplessly waiting, I decided to go to the fancy, expensive, private western hospital to see if I could get a biopsy done sooner than Tuesday. Sadly, I just got stuck with a fancier, much larger bill. But I did get a little better understanding of Lymphoma. And while this was indeed somewhat comforting, that a second doctor said the same thing, that where the growth is and how it looks and feels, it is most likely cancerous, did not boost my spirits any.

They could not fit me in till Wednesday and at nearly double the expense. Needless to say, I opted to keep my original appointment at the public hospital.

Again as I left, the rain was not hesitating in the slightest. I stared out the front door and just sighed. I was just too exhausted from the past few days and the rain seemed too much to me. I just wanted to go to Wat Chiang Man and attempt to meditate, but I could not even make it out the door. In my head, I went back over what I had read the night before, that Lupus patients often get Lymphoma, and said to my self, out loud, “I guess it was just a matter of time…”

Once again bending to the will of determinism, but without any capacity, without any energy, to push back.

This time I remembered that my poncho was in my bag, but I just did not care, or I could not bring myself to care enough to put it on. I finally walked out into the rain to find a tuk-tuk back to my guest house. As the rain hit me, and beaded up on my glasses I thought to myself, at least this way I can feel something other than my despair and anger.

Anger. My dear “old friend” that seems attached to me like a shadow. Oh how I thought I had lost you in the crowds of India. Oh how I hoped I had.

On my way back home, my mind was racing and probing for victims it seemed. It wanted to lash out and harm someone. I was aghast by this. The anger permeated me, pickled me, with its corrosiveness. As it was doing this I noticed something quite extraordinary — I had not been angry since sometime in February. Now I am not suggesting that I have not been annoyed or distraught, but I have not been so furious that my body feels bloated with bile and rage. Well until now. And this is something that is 36 times amazing, as there were points in my life I never even realized I was angry because this was my total, all encompassing, way of being. I was never able to shake it off, let alone exist without it cursing and sputtering through my veins.

But as I realized this, my joy of having escaped its grasp for some six months was majorly tempered by the idea that it was eating away at me again. And really the only way I have ever found to expel this is through some sort of violent act. Nothing I am proud of for sure, but this is the way it is.

I am not talking about hurting someone though force. I have not been violent to another being for at least two decades. But I would often bare my teeth and slay someone with my words — making sure to make them feel smaller than I ever have in the process. I essentially would transfer my rage to whomever I could find that would suit my purposes, making sure the teeth and rancor of my words scratched their bones as I shredded through their skin.

Surely one of my least admirable ablities, but I learned that I could scalp someone, filet their being with a few well chosen words and then walk away and leave whatever remained for the vultures to spar over. It always made me feel better. I often felt like I could skip away from these confrontations, as I was much lighter, having transferred the decay and inner disaster to someone else. Then a few hours later, my puffed up sense of import would quickly deflate and I would turn all my remaining anger inward, multiplying it.

Starting the whole cycle all over again…

Day 4

Talking to friends about my anger and how I needed to expel it, I came to the conclusion I had to force it out before it overtook me. I also acknowledged that before I can forge of new way of dealing with it, I need to rid myself of it. So taking some advice, after a morning of failed meditation, I headed off into the hills and found some forest wilderness where I could express my rage. I decided to toss rocks at trees and yell and scream in the most guttural, primal way possible. I hurled rocks at trees trunks with my left hand, because this damn tumorous growth made using my right arm in anything but the normal resting position hurt like hell. I missed the trees far more than I hit them, but with each throw the weight of my anger decreased. Each heave extracted it like a vial filling with blood when they take your blood.

After nearly an hour of this, I was totally winded, so I sat down to rest on a fallen log, almost content. I then took the time to appreciate and apologize to the trees I might have wounded with rocks hurled at them. Then as I sat there, still, I was finally able to meditate. The first time since I got the news. It was amazing. I was finally able to put the dread of the possible, the future, away and focus on the experience of now.

I am not even sure how long I did this for, but it really took me far into the day. It was beyond excellent. I then started my return to town and touched quite a few trees, again letting them know I harbored no ill will to them and just how thankful for them I was.

When I got to town I took my friend Kim’s advice and got a bunch of short stubby bananas and then proceeded to gorge myself on them. At first, I was a bit guilty, knowing just how bad they are for me. But the bliss of enjoying them soon totally took over. I really can not express how wonderful this turned out. Though after 12 bananas I clearly had had enough. And while I sadly know bananas will never be a regular part of my life, if I ever get into such a profound funk again, I will remember just what a profound mental health lifter they are. Though, to be honest, I do sort of worry just what I must have looked like eating them…. I am sure it was far from pretty.

I was also able to have a restful night’s sleep after my day of treating myself well and siphoning out the anger. And all told, this may have been the most beneficial thing of my entire day. As I had been functioning on 2-3 hours a sleep at a time when ever my body would just quit being awake, as my mind never stopped.

Day 5 – 6

Like a pendulum striking the side of its housing, I kept swinging back and forth from my earlier despair and my newly recharged positivism. Often times the swing would occur in the same minute. I cannot tell if this is a twisted form of equilibrium or the exact opposite, but there is sure nothing calm about it. One thing was for sure, I no longer burned with that red hot iron of anger. It has been effectively transferred out of my system. Now, while I am far from happy, I feel like a pot on a stove that raged through a fantastic vigorous boil only to have had all the liquid (anger) evaporate.

So that takes me though the denial and anger stages and places me firmly within the scared shitless and mass sadness stage. I equally want to run away from my appointment tomorrow and speed up time to get it over with.

– And just this moment, a lovely elderly Thai woman came in from off the street and gave everyone in the cafe, including the workers a banana. It is hard not to view this in any other way than the universe trying to make amends. Crossing my fingers this will be very auspicious of things to come tomorrow. –

If I learn anything tomorrow, it will be of the generally awful variety, as it will be strictly from the cat scan alone. So I am hoping I come back with only a sore arm, still wondering, and nothing else. The tests will occur when most of you are asleep. But if you could spare a nice dreaming thought or two for me, I’d sure appreciate it. No matter what happens it will be an outrageously scary day.

Updates here as the develop.

Posted in disappointment, i want to live, rumination | Tagged , , , , | 4 Comments

Where I Remember the Important Things

Something happened between now and when I left NYC, nearly a year ago. I am not sure of what it was, but I know it was/is destructive. I left NYC not just to see the world and the places I have always dreamed of seeing before it was too late, but also because I sought another option. I refused to see the five year sentence I was given as the only way. I was open to any other possibility. Another way. From countless medical professionals I kept hearing “you will not get better.” And while I can not deny that this was a huge possibility, I refused to give in to this reductive thinking. I refused to accept that this was the only way.

And I did just that. I found many things that have inhibited the further decay of my kidneys. I actually raised my GFR numbers, something my doctor told me was impossible. I refused to let his reductive thinking beat me.

Then over the past six weeks or so I forgot about the person who believed any of this. I lost my way. I got stuck in the silt of a swiftly moving river, with no way out and rising water almost overtaking me, as soon as even the idea that my Lupus may have returned. It crippled me. No wonder my body is failing me. I had gone from having faith that a solution may be out there, that I could find another way of living, to living an existence based on the very flawed concept of determinism.

I went from struggling to accepting, without even blinking. I gave into the notion that my prescribed path of dialysis and ultimate quick death was a ever swiftly increasing nonnegotiable fact. I shed a major part of who I have recently blossomed into being and became a sad shadow of myself. And really, I think that is mostly what happened. I became so depressed by recent events that I allowed myself to plummet back into wondering just how long I have left, spiraling downwards just because my Lupus is back.

What could be worse for me to think right now? Why do I tempt fate by giving it an opening to afflict me again? Why do I forget that, even though it was under rather dramatic circumstances, which I refuse to put myself through again, I beat this beast once? With concentrated effort coupled with Tibetan medicine I must believe I can do it again. Anything else is hopeless. And I am not hopeless. If I was, I never would have started this journey.

My nephologist told me that going into remission again is near impossible. As stated above, he also told me raising my GFR numbers was impossible. Yet I did. So just why should I believe him now? Why should I remain in his shallow area of thinking where his desire to treat my Lupus will harm another portion of me? How is this even an option, let alone the only one?

So in order to twist myself out of this funk I have made a big choice. No longer will I stew in the bile of western medical ideology where the plan — “there is no plan B” — consists of something that may “heal” one of my conditions while irrevocably doing damage to me elsewhere. This line of thought is unacceptable. Totally and Completely. I am not going to go so far as to fire my western doctor, but he is no longer going to be whom I refer to as my primary care doctor. As I continue to delve into the Tibetan medical tradition in order to understand it on a physical, mental and spiritual level, I keep coming back to the essential idea that the patient is responsible for his/her own recovery. My primary doctor should only be a guide for my journey to a more healthful existence.

So far my Tibetan doctor has been just this. My western doctors…. not so much.

I am not suggesting that jettisoning western meds in favor of Tibetan meds will cure me or even make my life easier. I have no idea if this will be the effect, but I know just embracing a system that empowers me as the patient, rather than speaks down to me as the ignorant patient, has lead to a swell of hopefulness and likely better health (currently waiting on results from my latest 2 week battery of Tibetan meds*). But once I made this decision two week, I was instantly transported to a far better place mentally than I have been in months. And this HAS to count for something.

As I continue to delve into the Tibetan med tradition, in order to understand it on a physical, mental, and spiritual level, I keep coming back to the idea that the patient is responsible for his/her recovery. My doctor is just a knowledgeable guide on my journey back towards health. And so far she has provided me with a map of well being that I would be extremely foolish to forgo in favor of a more destructive, invasive western treatment that would gurantee further complications. Umm… these are what I want to avoid. My Tibetan doctor’s treatmetns allow for choice. She never dictates to me. She does push me towards the health of my whole being, complete being rather than just in one area, but that is her job.

She does not just focus on medicine based treatment. And neither should I.

* Since I wrote this my results from using the Tibetan meds for two weeks have come in. The level of protein in my urine stayed the same for the 1st time on months. While this is not ideal, decreasing numbers would be idea, it is very very welcome, as before the kept rising so swiftly. Exponentially.
I also got some amazing news on my GFR numbers. They went up a point to 47. Or exactly one point below where they were in June of last year.
So yes, the next battery of Tibetan meds begins on the 22nd.

Posted in i want to live, lupus, things I've learned | Tagged , , , , | Leave a comment

Remission, Just a Fools Game, part 3

Part 1
Part 2

After spending a whole day bemoaning the return of unwanted interbody hostilities, where I rejected even the most basic notion of getting out of bed, I used Friday to find some sort of escape for the weekend. I wound up at a monastery, where I shed my ties to the modern world and grasped held of the positive energy there to help me rise above the crushing wave of despondency.

It was hard, but I did not drown.

Through lots of meditation and inner inquisitiveness I reacquainted myself with the concept that allowed me to leap into life saving mode before: extra time. I looked around me and realized had I given up at the beginning of 2010 — which had a serious appeal at the time, like how one often wants to touch a flame — had I not opted for the nuclear option, I would in no way have experienced most of the ups and downs of the past year, if not two years.

I kept hearing my at the time doctor’s voice telling me “if you do not do this I don’t think we will have a doctor/patient relationship a year from now.” He was not trying to fire me as a patient. He was telling me I would soon die without agreeing to change my treatment. A few weeks later I agreed and we scheduled C-Day. And because it worked, because I did not give up, did not quit, I am still here.

So I view anytime after February 2010 as extra time, life I would not have had access to without making a change. And this last weekend, I actually made myself laugh out loud – so hard that I both startled and embarrassed myself – when i realized that I allowed this moment, all this dread, this despair at my current state of health, to occur. Not giving up, jumping into the unknown, was necessary to get me to this state that echos where I was two and a half years ago. I find this incredibly funny.

After I stopped laughing, and it took a while, I really started to consider exactly what it means to have had this extra time. To have chosen to live over the alternative. I have been allowed to travel, to much of the world that only existed in pictures/books/movies/etc. I have meet amazing people that I never would have had the chance to enjoy. I was able to fall madly in love.

It also allowed me to expunge the the toxic, corrosive self that even I spent far too much time numbing my mind to get away from. I got to understand there is joy in just being alive, something that escaped me entirely in my 33 years prior. And it allowed me to invest my time in others, help where I was able and basically become someone that I am proud of. Before, I was never proud of myself. I loathed myself, often not so silently. That has dissipated.

I have become a better person in the two and half years since. In the time I both coined and experienced extra time. So the question now is how do I keep this trend going. I used this to buoy me, anchor me, assure I was not swept under the typhoon of despair that tugged me down this weekend. I looked at last time I was faced with impending doom and saw I was able to stay afloat, so I looked inward for my personal flotation device, and I began to tread water. But how can I keep this as an anchor as I continue to progress away from it?

There is a myth about me. That I am strong. That I can weather a storm sans raincoat and have none of my strength erode, even if that storm spews from a volcano. I am sure I have done much to cultivate this myth. For the longest time I even believed it. I thought that I did my best work under extreme pressure. That not folding under pressure was sort of my super power. But I have always folded. Given up things when they became hard, demanded I struggle to achieve them, rather than just get them. But all the same I have heard so many times “you are the strongest person I know” or a facsimile thereof.

I bring this up now because even though I found a fulcrum, a maypole, to attach my hopes on — that I will get better, that I can beat this again, etc… — I feel hopeless. Like my flotation device is a tauntly filled balloon now, but ready to become that sad flimsy balloon that you find behind the couch three months after the party is over. I feel deep within me that this is where I plunge over the waterfall. Even with all the positive thoughts I have cultivated in the past year. Even with an anchor as strong as extra time, I feel like I have used up my “do overs” and am back to having to deal with reality, that my extra time is finite.

I have always know this. But like any sensible person I choose to bask in the possible rather than the probable. I saw the developments of the alternative therapies I found in India as being the start of something new. Something better. I thought I had found my yellow sun, my green ring, my speed force, the cause of my ever desired superpower. But, and this is a big but, I found time to be me, to exist in a bubble where things looked promising. And well, I sort of have the feeling that this life is not supposed to be about promising. That there is a lesson I need to be learning, but I am ever so obtuse and incapable of seeing what it is.

So while I will continue to use the notion of extra time to enjoy every moment I still reside on this giant orb, I also must say that I scared shitless about what comes next. In two days of this round of Tibetan medicine, I have felt no shift, no tremendous momentum that I felt the last two times I used them. I am not counting it out, I am just expressing my disappointment.

Once again, my future seems ambivalent. And while I can certainly see where some might see that as inspiring and even great, I have spent too much time caught in this well to see it as anything than walls closing in on me. I do not currently have the energy to even contemplate what this means. For the past two and half months I have spent an inordinate about of time just lying in bed. Even when I was doing my TEFL class last month, I spent far more time lying down than I did in the months preceding it. My body has been telling me it is suffering since I visited Ankor Wat. I just was tuned to another channel. I forgot to listen.

But at the same time the only light I can see from this well is up. And I must try and climb. Or else the great strides I have made over the last few years will all be for naught. Only, I have no ladder, no rope, and I have never been known for climbing. I need help.

The myth of my strength is that I could do it all on my own. when asked how I could get through something? How I could deal? I would tell them that I had little choice. That not dealing was failing, or something quite similar. I would say it with a pumped up chest, and if I had tail feathers they would be aflutter and spread out for all to see. But I never believed it. It was simply a pose. An act.

I always had help, even when I would disguise it from others.

But now…. Now I need that help. If you have ever met me, you know if I am asking for help, well I sure as hell need it, as I never do it. I am finally at the point where I can no longer trudge against this alone. But that is what I am, even with the people I have met here.

So while I concentrate on the extra time I have given myself and the person I want to stay (not the person I am afraid that I might become). I ask all of you to send as many good vibes my way. A rope, a ladder, or even a golden lasso would be ever so appreciated too. I know where ever I am I am not alone, just sometimes — the dark times — I need to be reminded of this.

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Remission, Just a Fools Game, part 2

Part 1

Like being stuck watching an awful sequel to a movie that you never even wanted to see in the first place, my Lupus is back. I got the news late last Wednesday night. And after five days of sleepless nights, I took this to bed with me and finally slept. I slept all night through. But it was really just a restless sleep. I woke up early. I woke up thirsty, parched for sleep.

I tried to meditate. Tried. I could not focus on my breathing. I could not turn off the what ifs, the how comes, and the general sense of despondency that populated my mind. So instead I walked. I tried to take in the sights of the old city section of Chiang Mai. Tried.

All I really could do was want to fast forward time to the time I had agreed to call my doctor. I needed to hear what my options were. I needed to hear him tell me this was beatable. That remission again was around the corner. That he had misread the results.

I need/ed what is clearly impossible.

That basically sums up the six word memoir of my life.

I wanted to eat, but my stomach was a mess, so I opted for a passion fruit juice and then to just eat the minutes, like a glass full of ice chips, till I needed to call.

When I finally got off the phone, err skype, I could not convince myself to get off my bed. I laid listlessly there all day. Flipping between the 8 bad English language TV stations available to me. In fact, I did not even take a shower till 5 PM when I realized I had to get up to go to dinner with a friend. Just listening to the synopsis of what came next was too damaging. My doctor recommended that I combat this new development with Adenosine. Let me rephrase that, my Nephrologist thinks I should take Adenosine. Adenosine, which will tank my GFR score, or you know destroy all the good I’ve done for myself and my kidneys over the past year.

So, yeah, as you can guess I am less than happy about this.

But before that begins, this morning I started to take Tibetan medicine from my doctor in Mcleod Ganj. I have two weeks worth of pills — and some serious dietary restrictions — to take before I have my next blood test, to see if they can control the rising proteins.

If not I have to decide if I want to leap off a cliff, where my GFR numbers seemingly will fall faster than me, to help correct this. My doctors words: “If we do nothing, they will likely fall faster,” well that and the lupus would metastasize and my chances of becoming the “angry me” again grows exponentially. I can not take Prednisone, which would be the ideal solution because it is what ate my bone and forces me to use a cane. So I hold out hope that the Tibetan meds work. That they can control this and while the Lupus will remain in my blood, it will be contained.

My doctor told me not to get my hopes up for going back into remission, as if the chemo treatment could not ensure it, the chances of it happening through some other means is just not very good. So containment is the best possible case here. And to be perfectly honest, I would be thrilled to death with that.

Also, I am not at all disturbed that i would be thrilled to death with containment, or you know an official American cold war policy that was both an extension of the myth of Manifest Destiny and tied up all the isms & phobias (sex, race/homo, xeno, etc) up in a tightly tied bow, shook them like loaded dice, making sure none came out. And those that did, well a certain McCarthy had an idea where they could go in the states and a Marshall had ways of ensuring US hegemony abroad. Yeah… not disturbed at all….

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Remission, Just a Fools Game, part 1

There is a song, that I am sure most of you have heard, by Bonnie Tyler called It’s a Heartache. I feel these lyrics infinitely capture my last week:

“It’s a heartache/Nothing but a heartache/Hits you when it’s too late/Hits you when you’re down
It’s a fool’s game/Nothing but a fools game/Standing in the cold rain/Feeling like a clown”

And not because I am still nursing a shattered heart, but because my Lupus is back.

And as much as I understand this song is about the soul crushing loss of a lover, I keep coming back to this line: “It ain’t right with love to share/When you find he doesn’t care for you/It ain’t wise to need someone/As much as I depended on you,” and thinking it maybe the easiest way to discuss how I currently feel about my body.
My body the traitor.
My body that aspires to eat me from within.
My body, who after years of self abuse and my flagrant disregard for, I thought we had come to a peace, where our desires could coexist.

Alas, I was wrong.

One of the biggest lessons I learned after my trans-formative adventures in chemotherapy was that the great Marshall Mcluhan was absolutely right: “the medium is the message”. Or that it is impossible not to mimic the self destructiveness that your body exhibits. See, for the first 34 years of my life i learned from my home life and my body that self destruction/sabotage/wtfever were normal, if not required actions. When your own body is attacking you, eating vital organs, feasting on your life, it is impossible to ignore – even when you are unaware this is going on.

This is your body, of course there is a connection. Just think how floored you can be when you are tired, have a headache, or the flu. It affects everything you do. It influences your actions, all of them. When something is amiss inside, it manifests itself outwardly. So as my body devoured my kidneys before, my behavior became unacceptable. I learned from it that I was not worth being healthy. And from there the snowball mounted, pushing me further into belief that I did not deserve the important things in life: happiness, joy, love, etc. And as someone that seriously believed this, let me tell you, once you start down this line of thinking, you begin to actively blow up any path that even looks like it might lead to anything other than misery. So much in fact that I wonder if the self destructive nature is that elusive machine of perpetual motion that seems unobtainable.

I bring this all up now because the past two and a half years has been the story of me exiting this pupa of misery and becoming a person that actively cultivated a desire for happiness, joy, & love. And often times even found them. Yes it has been trying at times, but where I in the past would destroy the chances I had at any of those things, now I consult maps on how to get there quicker. Hell, I catch myself smiling all the time now. Not just when I look in reflective surfaces, but I can feel it on my face. And when I do I do not rush to bury it in a frown or a flat stoic expression as I did in the past. I enjoy it. I enjoy this tiny reminder that I so fundamentally shifted myself that I can now enjoy things rather than slicing and dicing them open to find any and all imperfections to complain about.

The news that my lupus has returned — that remission was just a matinee feature — has filled me with dread. But not exactly from the health concerns. I mean really, I have gotten to the point where I am on point with what is happening with my kidneys. Sure I was able to prevent them from dying as quickly as was predicted, but just in the nature of me being alive they are dying. And unlike most of you, mine will not outlast me. The nature of all kidneys are to die. They do not regenerate like the liver. This development most likely will bring about that death faster than I would prefer, but… I have made my peace with this. It is what it is.

No the dread is about how scared I am that the self destructive nature of Lupus will build, become insurmountable, and take me with it — erasing the person I have worked so hard to become. That this dread feels so omnipresent only goes to confirm this. And would I even be able to live with myself if I slip back into the kind of person I was before. That person that seems to loom on the horizon like a cresting storm…

There is that heartache again…

Here is my favorite version of It’s a Heartache done ever so wonderfully by the very under appreciated Wellington International Ukulele Orchestra:

(The next two posts will detail my options and how I am trying to reassert and anchor my positivity.)

Posted in disappointment, lupus | Tagged , , , , , , , | 6 Comments