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There can be no darker or more devastating tragedy than the death of man's faith in himself and in his power to direct his future.

-Saul Alinsky

It's going to be a full day tomorrow. Before we were able to get some things rescheduled, mom had jury duty, grandma had a followup with the audiologist, I finally get the results back from the kidney biopsy and dad goes to the medical oncologist. In addition all the kids, with the exception of Katie, have school and/or therapy. It hasn't exactly been smooth sailing around here and I'll admit there's more than a little dread and expectation of disaster. Dad's cancer has returned and metastisized from his liver to his lungs and adrenals. The surgeon who had removed half his liver previously says things are pretty much too extensive now for any form of ablation, even using things like radio frequencies. He won't say how long life expectancy is, but that's a pretty poor sign in and of itself. This was the same guy who was willing to push forward with the previous surgery despite the fact that 2 other doctors had disagreed and had even proclaimed that he thought 10 years plus was a possible outcome. The fact that he won't even go so far as to make a guess now means that it's probably dismal.

Shelley has tried to do some research into drug treatments and clinical trials. She had tried to get in touch with Raymond since he's a MD and ask for his input, but he was pretty worthless. All he had to contribute was the name of the standard anti-liver cancer drug that anyone could find with the most casual google search on the topic. Shelley was able to find 2-3 clinical trials that apparently show promise in both New York and Pennsylvannia, and the best part is both drugs require that you've had no previous drug treatments for cancer so as not to muddy results. The articles about the new drugs she printed out seemed to be promising, but there are God only knows how many hurdles left in the darkness to make it over before getting into those trials are even a possibility. She's going to go with Dad to the medical oncologist and I guess we'll have a better idea of what the path will be tomorrow.

Tomorrow I'll also find out what the results of the kidney biopsy are. As I was telling Bill S at this past gameday, the only two options I have are bad and worse. There's no chance for anything resembling a 'good' result here. That ship has sailed who knows how many years ago and I never even knew it was gone. At this point, all that's left to find out is if I slide into kidney failure and end up going on dialysis within the near future or it's even worse and I potentially drop dead in a couple years instead of a decade. On the up side, when you know your only options are shitty and super shitty, at least you don't have to deal with the glimmer of false hope and inevitable disapointment.

I was reading a website last night about how some people with kidney failure just decide they'll refuse to go on dialysis. They figure the costs to their quality of life aren't worth the life extension. They'll try to hold on to what kidney function is left, but just slide into the darkness rather than raging against the dying of the light. It's something to think about and it's not like any decisions have to be made anytime soon. In a way it's a far luckier choice than dad may be forced into making one day soon. From everything I've read, kidney failure just seems to involve weakness and lethargy. At worst you might get a bit derranged due to to the build up of toxins, but it's unlikely to be something that brings a lot of pain or discomfort. I guess that's something at least. Small blessings.

Just eat it

Fusion food as a concept is kind of trying to quite consciously fuse things that are sometimes quite contradictory, sometimes quite far apart, to see if they'd work.
-Yotam Ottolenghi

So mom and grandma heated up the fried rice from last night and had it for lunch. I discovered at some point after talking with Shelley at the restaurant was actually some sort of Indian/Chinese fusion place. My mom was a little skeptical when she first saw they used long grain rice rather than the rice she was used to but she said it was actually better than chinese fried rice. I gave it a taste and the curry rice was especially nice with a good spicy kick. I'm not sure I'd actually order it without the discount though. $13 is a wee bit on the steep side for an order of fried rice. With the discounts, I only ended up paying $7.50 or so including tax which was a hell of a deal. The only downside with the fusion is that it'd probably make you fat...

Oh, it looks like peeing at some point during the night or whatever dropped my weight down to under 305 this morning, so I've officially crossed the 50 pound loss threshold. I guess the goal is to toss another 5 to get down past the psychological inflection point and then see how far I can push it. The skinniest I've ever gotten doing that no carb diet was a little over 280, so it's still 25 pounds to go before I'm breaking virgin territory.
I must be an anorexic because an anorexic looks in the mirror and sees a fat person.
-Jo Brand

I went to a gameday at Sarah and Brian's place today and mostly managed to not do any major caloric damage. I ended up eating half a slice of pizza and some bagel chips which I figure added up to around 250 calories for the day. It's never easy to ride the brake and I'm honestly not sure how long I'll manage it. When I got home I weighed myself to find that I'm now just a pound and a half from having dropped around 50. It just so happens that it's also been exactly 5 weeks (35 days) since I started this whole thing. That's a pretty impressive milestone, especially since I haven't really made any effort to exercise or increase my activity level. I'm sure that will become necessary at some point but for now, I'm just going to keep things going as is and see how far it gets me.

So I got home around 3 hours ago and had been lying in bed, dicking around on the computer. I started browsing some deal sites and ran across a thread about using chase pay and getting $20 off if you made a pre-pay order from one of the
ir participating restaurants. Would you believe I actually placed an order, got dressed, and drove out to pick up an order of Singapore fried rice and a spicy curry fried rice? I even got a bit lost along the way since the google maps directions were erroneous and only made it to the restaurant 5 minutes before they closed. I just couldn't help myself even though I knew I wasn't going to eat it. I tried to push it to various people but no one was interested at that hour of night and so I popped it into the kitchen. I just can't resist a deal. That is going to be a major problem over time.....

I've also discovered that if you ever decide you want to live forever, or at least feel like every day is passing interminably slowly, just severely food restrict yourself. You generally end up planning what you'll allow yourself to eat a day or even days in advance and then it's like you're watching the seconds creep by.


Big wheel keep on turnin'

'When you believe without knowing you believe that you are damaged at your core, you also believe that you need to hide that damage for anyone to love you. You walk around ashamed of being yourself. You try hard to make up for the way you look, walk, feel. Decisions are agonizing because if you, the person who makes the decision, is damaged, then how can you trust what you decide?'
-Geneen Roth

There's something really profound in that quote. I was say, though, that it's even worse when you do know. It must be terrible to run into terrible outcomes and only suspect that you're the cause but far more terrible to take away that uncertainty and to know that you're broken and there's no one else to blame. As someone else has pointed out....the only commonality in all your dysfunctional relationships is you.

Sometimes I watch reality tv like Hell's Kitchen and if I'm in a melancholy mood, it's always with wonder and a bit of envy. I see individuals who are so sure of their own greatness, who wear their overweening ego on their sleeves despite anything that other people throw at them or even reality itself. They never question or doubt and any failure is always someone else's fault. It's like they've somehow managed to weaponize their own self-esteem into a narcissism that both shields and strikes. I wish
I knew how that was possible. How to quiet the voices in your head which only tear you down and there's no defense because you know they're right.

It may seem sort of unexpected, but I'm a person who believes in the wisdom of the crowds. No one owes you anything. If many people love you, then there is something within you that is worthy of that love. The same goes if you receive hate, or perhaps even worse, complete indifference. We all get what we deserve in the end and there's no point to blaming others or blaming fate. In the end, it's all you. You can try to avoid it or you can try to bluster, but when the night is silent and there's nowhere else to hide, you always know that it's because you're broken. You were never good enough and never will be. It's only the faintest blessing that you hope others can only skim the surface rather than seeing the full depths. Roll it up in shame and hide it away where no one will ever see, but you can't hide something and not know exactly where it is. You cannot hide from yourself.

So that's all pretty pathetic. What else has been going on.... Well, the convention was fine even though I didn't do much other than run two games and then sit around. It was sort of nice to interact with more people and everyone seemed to enjoy the Starfinder games. I also relaxed the diet somewhat and ate a little more than I probably should have. The bane of my existence will always be free food. I simply can't help myself, though I managed to not eat most of it. This didn't stop me from taking it though.....I ended up packing away something like 30 dinosaur shaped chicken nuggets over the course of a couple days in tuperware along with a hamburger, and an egg and sausage english muffin. All of it then got fed to Ally and Katie, so none of it went to waste. I did unwind enough to let myself eat some breakfast in the mornings and then some of the french fries dipped in mustard on Saturday and Sunday after making sure I ate nothing Friday. I was a little worried about whether that would halt progress, but it looks like the weight continues to slowly drop. Another 5 pounds or so and I should be down around 50 overall. I should easily cross that line in the two weeks I have left and then we'll see how well willpower holds when I'm not at home.
Loneliness and the feeling of being unwanted is the most terrible poverty.
-Mother Teresa

I've been feeling lonely lately. Lonliness has never been about the number of people around you but if that's all it were, I have plenty of family that I'm with every day. It's just not the same though. There's always going to be that sorrow of knowing that to a large degree, family is there for you because they've been forced into it through years of compelled association. It's not like you can't break those bonds but it's hardly something you can hold up and say that it's proof your life had worth. Even Hitler had a mother after all. But Hitler also had Eva Braun. Sure, you can probably make a pretty convincing argument that she didn't exactly make the best choice there, but even he had someone who was willing to love him and entwine her life with his. Maybe we shouldn't put so much of our self-worth into what others think of us but that's the sort of self-congradulatory bullshit that works for those already secure in the knowledge that they're loved or at least have been.

I was thinking the other day how Mom was all interested in that whole making Katie my God-daughter a while back and maybe I should see how she feels about ghost-marriages. I remember seeing it on an episode of Bones or Castle or some similar show and apparently it's an old Chinese tradition of marrying people after they're dead, to another dead person or even a living one. Apparently the deal was that it was a means of securing a family's lineage if the line would otherwise have died with a childless son. So you find a nice young woman, marry her to your dead son, and then she adopts a child, preferably somewhat related to the family, and poof...you have a living branch to the family tree where once there was a dead limb. It was also apparently done to appease restless ghosts who parents and relatives worried would be lonely in the afterlife.

Dearly Departed, we are gathered here to join this man and this woman in unholy matrimony....

It's hardly an ideal situation but none of us know whether who's right about whether there's an afterlife or not. Wouldn't it be terrible to know that you end up roaming the earth as a ghost and that lonliness breaches the veil of death?

According to the BBC, these ghost marriages are still going on in the hinterlands of China. It's even led to a couple of murders since even all the dead girls are taken. There's really a bit of terrible irony in that.


'According to Huang Jingchun, the head of the Chinese department at Shanghai University who carried out a field study on ghost weddings in Shanxi between 2008 and 2010, the price of a corpse or the bones of a young woman has risen sharply.

At the time of his research such remains would fetch around 30,000 to 50,000 yuan (£3,400 to £5,700; $4,500 to $7.500). He estimates the price these days could be up to 100,000 yuan.'

I mean, that's a pretty hefty price tag but if you take the price and divide it across all of eternity, it's really quite reasonable on a per year basis. Maybe this was my mistake all along. I should be looking for unattached women in cemetaries and mausoleums. Better start soon since I'm sure that all of them will have suitors eventually since there are probably a billion other Chinese men out there.


Diet Update

The meal isn't over when I'm full. It's over when I hate myself. 
-Louis C. K.

So I've been trucking along on this diet and I started weighing myself a couple days ago to see just how much weight had dropped. I started this fat enough that I basically went past the max weight of the scale at the doctor's office so I'm not sure exactly how much I've lost but my best guess is the number stands at somewhere between 40 and 45 pounds. The weird part about it is that it's really much of a noticable difference considering that it's 12% or so of body mass and all it's taken is practically starving myself for 3 and a half weeks.

Really though, it hasn't been all that hard and that sort of worries me too. I can pretty much go without eating for days and there are few if any physical effects. The fact that I'm actually eating at least 500 or so calories a day and just keeping it below 1,000 means that even those few symptoms have pretty much been eliminated. About the only thing I end up having to deal with is the emotional angst of it all, which is no fun.

I also haven't added any more activity to my daily routine though I know that at some point that's going to become necessary as well. Everything still feels frazzled and off-kilter with the whole kidney issue and part of me still feels that I should just give up and make a serious attempt to just eat myself to death. Heck, at least I might be pseudo happy for a time. I'm reminded that I still never got around to having one of those KFC double-down sandwiches.


I'm not sure how long this has to go on before I can actually internalize the change and it really feels like a new normal, rather than something I have to whip and drive myself to do every minute of the day. I guess the real test will be in another 3 weeks when I leave to go to Orlando and we'll see how long the will power lasts. I'm sure things will also get harder the longer I try to maintain this as the human body wasn't meant to function on 500 calories a day. It's all fine and dandy right now because I've got enough fat stores to survive a famine but at some point there's going to be repercussions and nutritional deficits that I'm going to have to somehow deal with. Supplements and vitamins will be problematic since many of the multivitamins and other concoctions will contain potassium or phosphorous, as well as other things the kidneys can't deal with and which could become toxic. It's all a mess.


Drill, Baby. Drill.

LSD burst over the dreary domain of the constipated bourgeoisie like the angelic herald of a new psychedelic millennium. We have never been the same since, nor will we ever be, for LSD demonstrated, even to skeptics, that the mansions of heaven and gardens of paradise lie within each and all of us.
-Terence McKenna

Second verse, same as the first.

So the biopsy seems to have gone pretty well this time with no hitches. I won't know the results for a few business days, the nurses think about Monday, and I don't have another appointment with the nephrologist until 2 weeks from now anyway. I'm guessing the last time around they didn't fully give me the cocktail of night-night drugs because I remember feeling drowsy and dozed off for a bit, but I was able to fight it off at times. The recover was also swift on Monday where I felt good enough to pop out of bed almost immediately and walk around. This time was different.

Just like last time I basically was singing to myself in the cat scan room, working my way through a repetoire of various musicals. It's something I've done for years, usually whenever I was in a situation where I was trying to distract myself from pain issues. I would just start pacing around and singing. There was no pacing to be done this time but there was some anxiety to soothe so I just went with it. The nurses and doctors in the room seemed pretty appreciative as they hooked me up to all the various monitors and then strapped me down to the gurney on the cat scan machine. It turns out they had gotten right up to the end on Monday before the machine broke so I've had a bullseye drawn on my side for two days that I never noticed.

Anyway, they did all the preliminary scans again and this time without any sedation at all. Then the anesthesiologist came over and said that he was going to give me some of the good stuff now and that I would be feeling sleepy. As far as I can recall, I was in the middle of a chorus of Something There from Beauty and the Beast when I zonked out completely.

What happened next is a sort of a haze. I seem to remember something about fluffy blobs or maybe they were clouds and some sort of ring aparatus. I felt sort of free floating and then it was like I was being shoved back into my body. I got the impression of one of those Japanese mecha-suit animes where they slot the pilot into this huge robot exoskeleton. Clearly I hadn't been in my mecha for a while as everything went weird, like the controls didn't quite work right. I remember talking but it didn't sound like my voice and I sort of hand to do a slow, step by step inventory to figure out out if all my limbs were still there. I also basically felt like shit warmed over.

Don't do drugs, kids.

My head ached and I couldn't seem to shake off the lethargy. All I really wanted to do was go back to sleep but I figured I should make an effort to try to throw off the remnants of the anesthesia, which ended up being easier said than done. I snapped the above photo after muttering to my mom I wanted my phone and clearly I am stoned out of my mind. It was not a pleasant sensation. I continued to feel like crap for quite some time. At some point I might have dozed off but my mom had apparently ordered a meal from the hospital for me. They had offered the same on Monday but I declined since I was still trying to keep to a severe calorie restriction and didn't want the temptation. I've been staying under 1,000 calories a day for the past week, trying to hew more to around the 500 mark. For the two weeks before that I doubt I was taking in more than 2-300 a day. I didn't get much of a choice this time around though as the meal arrived and they maneuvered me up into a position where I could eat it.

This salmon is so dry it makes the Sahara look damp, you donkey!

It was pretty egregiously terrible. I'm not a picky eater and I wasn't going to throw perfectly good food out but that first bite of the salmon practically choked me to death. I was lucky it was a very small bite and I was able to breathe around it while trying to get it to scrape its way down my throat. Initially, the best thing on the plate were probably the carrots and all they had done there was boiled water. Everything else went downhill from there. Adding a sprinkle of salt and the Mrs. Dash to the rice made things a bit better and though it took a long time I ended up shoving it all down.

My head was still spinning but they said they wouldn't be able to let me go until I had peed so I made an effort to wobble to my feet. I kept telling the nurses that I wouldn't fall, but I'm not sure if I was trying to convince them or myself. Even now, 4 hours later, my head _still_ feels wobbly and not screwed on straight. I managed to make my way to the bathroom and was happy to find I wasn't pissing blood or anything so there's a positive.

They kept me for another little bit and then said I could leave by wheelchair. In all the other times I've been discharged from various hospitals, they've all wanted to get me a wheelchair and I've turned them down each time. I figured it was probably the better part of valor to just give in this time around since my head was still doing loopdy-loops. Besides, the minute we started rumbling down the hallway I knew I was in trouble....

Easy come, easy go....

I managed to stagger out of the wheelchair and out the automatically doors just before Vesuvius erupted. Weird. I remember it being more of a pinkish color. Looks like the camera disagrees. It also felt and looked like there was a hell of a lot more in my memory too. Oh well, it's just as well I tossed it as this way the calories don't count against me. Maybe those bulemics are on to something.

Anyway, I ended up stumbling my way to the car and my mom drove me home. I'm still feeling a bit dazed all these hours after the fact and my head feels heavy. On the plus side, I would have had no clue that someone took a giant needle holepuncher to my guts if they hadn't told me. I've only just started to feel the barest twingey sensation from the puncture site and it's more awareness than any pain. I'm sure that'll change with more time too. No idea what the test results will show but at least this part of the shitshow is over. On to newer and probably even more terrible things....


I guess it should be no surprise. It's not as if I haven't already more than enough examples that my luck is terrible. Today was supposed to be the kidney biopsy and everything went smoothly at first. My aunt Kaila took me to the hospital since my mom and dad both had doctor's appointments and she was off due to the Jewish new year. All the tests and measures were taken, the i.v. was in, and I was taken to the room where they fiddled with the machine. Eventually I was situated and the scans began. It was also at this point that they started sedating me so I missed some of the middle but it seems that just as they were ready to do the actual puncture, having marked their approach and gotten all ready....pfffffft. The machine died. Turning it off and turning it back on apparently did nothing and neither did contacting the tech/engineering support for whatever stupid company made the cat scan.

So I went through all of that for nothing. Absolutely, fucking, nothing. All in all I spent just short of 5 hours in that hospital today and I'll end up having to do it all over again this Wednesday. There's some part of me that thinks it just figures. Terrible longshots keep happening to me as if I'm cursed. I was just telling Kaila about how I stated entering all these sweepstakes and contests, trying to find some form of balance as if just because these rare, terrible things happen...there should be some rare and yet positive ones. I've been looking but so far it seems like my luck is unidirectional. I guess I should just be happy I didn't wake up after coding, being resuscitated, and finding myself as half a vegetable. Then again, at least all the angst and worry would be over.

Hello darkness, my old friend

Part of every misery is, so to speak, the misery's shadow or reflection: the fact that you don't merely suffer but have to keep on thinking about the fact that you suffer. I not only live each endless day in grief, but live each day thinking about living each day in grief.

-C. S. Lewis

I've been feeling sort of down lately. It's hard not to look back on the whole of my life and see failure writ large. It's pretty much been an enormous waste. What have I really accomplished or achieved in all these years other than to exist? I'm sure someone digging through the detritus could form platitudes but those all ring hallow to anyone who cares to listen. What's not said looms like an empty hole into which is no real fill.

It's ironic really since it's only recently, for the first time in 20 years that I've managed to crawl out of the pit of pain and disability brought by the hidradenitis and I have to wonder what was it all for anyway. I took each day, one at a time, for years....trying to never lift my head to look forward nor back. I can't say it didn't work either. Hell, it might even have saved my life, but now after it all, I raise my head and only see blasted wasteland all around me. What is the point of a life? Where is its value? Maybe I'm just bitter at the sense of betrayal. Like a marathon runner who finally saw the finishline approaching after a grueling race, I see now that it was just a checkpoint and the next stretch is filled with all new horrors and tribulation. And you have to wonder if it's all even worth it. You're simply yet another blob of crap, consuming resources and producing nothing of true value.

I've heard some people say that no one will ever really love you until you can love yourself. If that's the case than I think there's little chance of that ever happening.

Brace for impact

"People are supposed to fear the unknown, but ignorance is bliss when knowledge is so damn frightening."
-Laurel K. Hamilton

Had an appointment with the primary care and she glanced over the x-ray and ekg and signed off on the renal biopsy. I guess that means that there wasn't anything heinously wrong with either, which is sort of a relief. This means that the biopsy will go forward on Monday. I'll have to be fully sedated for it because of the sleep apnea and while it's sort of a bother, it's just as well. No anxiety about the procedure now and they can stab me like a pin cushion and it's not like I'm going to know. There's always a chance something terrible happens, and the tech/nurse walking me through it made sure to mention some of the fubars, but the odds are quite slim. They apparently have a pathologist in the room with them when they're doing it so he/she can immediately look at the sample and see if it's enough and of usable quality. That's good since I'm pretty sure the last thing I want is to have to do this repeatedly.

After that, it'll be the waiting and see just how fucked I am from seriously fucked to totally fucked. You know you're in a bad situation when all your possible outcomes only manage to range between those two options. I guess the plus side is at least at that point we'll know how things stand and if nothing else, planning becomes possible. Right now everything is just in a holding pattern. When I dwell on it it feels like you're watching an hourglass bleed sand without any way to stem the flow. All you know is it's going to run out of sand and probably sooner than later. Usually I'm thinking about kidney function but it's really not much different with lifespan. They'll end up going hand in hand and right now, there's nothing to do about the flow.

I'm still keeping to the diet. I started to worry I was doing too much additional damage with the whole almost completely not eating so I've added some food back into the mix. This might be suprising to a lot of people but eating some actually makes it harder on me from an emotional standpoint than not eating at all. I can tolerate the latter but constantly having to ride the brake takes an emotional toll. I ate the most amount of food today that I've had in 3 weeks and it consisted of:

1 3" by 4" slab of Shelley's Mexican Lasagna
2 pieces of white bread
1 chicken thigh
2 small nuggets of salmon
10 baby carrots
20 sunflower seeds

Added all up it seems like it should be less than 1000 calories, which I figure is my upper limit, but it still felt like too much and it was a struggle. If I just ate nothing it would have been easy peasy. I'll see if I can keep walking this tightrope but I really don't know. It just generally feels terrible. If I wasn't worried I'd screw things up even worse than they'd already are, I swear I'd just starve myself for the rest of this month and see at the end how things looked.


domo costume
In the darkness the trees are full of starlight
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