Time games

People are funny with their 'time games'; I mean I used to do them , but I can't believe people still do them.  

I know you've have had one of those friends where you jump in their car and you notice the car clock.

Oh shit , you say, we're going to be late.

Nah laughs your friend, I set it ten minutes fast so I always have time.

........k.......  I wonder if it's a subconscious need to do math every day.  Oh shi- wait....minus ten....nice!

My other favorite is the snooze alarm.  I've heard people hit that thing at least twenty times before getting up.  Wouldn't you rather sleep until you couldn't and then just ...get up.  Why all the interruptions ?

Hurry up and wait.

So now I reside in a 'holding pattern', where I await my body to get sicker so that I can get a transplant.  Unfortunately this is going to be a financially tight because I've been out of work since last summer and with no end in sight , my income, and health insurance is going to dry up.  (there's got to be a better way to get a liver...)

So currently I eat 19 to 18 hours a day through a tube in my veins(at home which is good!!); and f
or the past two months I've been dealing with puking issues.  Like every time I try to eat something or drink something.  I have to let my stomach rest for a day or so and then try again.  The trick is eating the right foods and slowly.

My brother and Candice came to visit for ten days from  Saudi.  It's always a pleasure to have them around.  They wouldn't know this the way that I treat them;  I'm such a jerk when I'm sick.  I'm trying to work on it.  They are the best though.

Home is hang your TPN bag.

Home today!!!!   Yeah! My peeps.  See, not always bad news.  Can't wait to play some of my new vinyl...including HEROES SYMPHONY and some Ziggy Marley....

Plus I'm getting an original game boy in the mail today!  Peew peew!  Sweetness.  

Everyone cross your fingers so that I stay out longer this time.  This place hurts my soul after awhile.

Best,

Esch

Billy Rubin

   Did any of you hear of yoppie joppie or ibs growing up?  It was basically like pig Latin exept with yoppie joppie you'd alternate between switching all vowels to op or opie. Ibs was the same.  So, 'my name is Eschenbach ' in yoppie joppie would be.... Mopie Nopmopie Opshopenbopch.  

What does Billy Rubin refer to? ( answer in ibs)

A) Jewish baseball player from the 50's

B) the waste material of Red Blood cells that are flushed from the blood when they die.

C) A famous Deli known for their steak and cheese.

(Ribd Sibll's wibstibie mibtibietibl.)

Billiruben

   So this is what causes people to have yellow look about them when they have Jaundice.  The liver and kidneys can't properly dispose of the waste and it builds up in the the body.  My levels went up a little yesterday so the doctor's got there pibntibys all in a bunch and may be keeping me longer.  "roar" I hate this disease.

Basically the past month I've been in and out of the hospital trying to get my weight up with out barfing and now that I have that down the Gopdopin Jewish baseball player hit a foul ball at the bottom of the ninth , 2 outs, bases loaded.

anyway....

check ya,

Esch

if any wants to see a informative quick video on the history of Japan....type history of Japan into YouTube ...first entry.

FOOD.

I finally got the doctors to drop the tube feeding.  So I can eat normal food again except I have to pack on the calories and protein.  So a few ensures here....extra ice cream please.  Cottage Cheese has a lot of protein in it.

Of course I'm sitting here waiting to eat as usual because I can't eat or drink anything before an upper endoscopy.  

Just to let you all know...I'll be in the hospital quite a bit over the coming months so don't be surprised or alarmed.  It's just the nature of this bastard illness.

Short one,

Love,

Chris

Waiting for Doctor

    So, sorta have been incommunicado since I was released the first time.  However to sum up what has happened since then:  2days home start vomiting over a bowl of cereal I had.  ER...sends me home after testing tube feed (for an hour!). Home over night /vomit /back to ER...ER admits me....stay 10 days / back on tube feeding; everything is Hunky Dory as long as I don't eat. Released/home two days/vomit cause I need to hydrate and I try drinking water.  Back in the Saddle.

       Yeaaaaaaaah, it's been an annoying few weeks.  All the while I'm craving foods like a big bowl of Spicy MIco Ramen from Sapporo in Porter.  Yum yum yum.  And foods I haven't even eaten yet that I want to make, like these Polish steamed cabbage dumplings.  I walked into whole foods last night with Sarah so she could get some grub and I realized it's citrus season!  Damn my illness.  I hope I'm paying off some serious karmic debt-that pumpkin I threw through somebodies parked car window when I was 9th grade.  BE WARY OF YOUR TEENAGE SHANNIGANS.  

    My new roommate for the most part is quiet but he has hardcore demensha (sp?)  , and he'll talk calling for no one in some Slavic language .  When I enter the room he looks at me wide eyed and calls out.  I want to reply but I escape to my bed feeling creepy.  One of the nurses came in and he started to speak and she was like ," yeah yeah".  Clearly white noise to her, however it did take the burden of creepiness off my chest.

   Came back in because a,) vomiting , b) malnourished .  Losing a little weight (especially in the winter) is cool; but brother when you're gather your bones together to take a bath.  When you look at your leg and think..'hm?  I never thought the bone was shaped that way'.  When your hands look like Grammies hands.

My Plan of Attack                                                          There Speculated plan.  

Stop tube feeds all together go back to food. Yum.           Hellbent on tube feeds , get me back on.

High fat and carbo diet. (Heavy cream on cereal...just.      Tubefeed mixed with eating (EEEE (family 

Kidding).                                                                             Feud noise))

Anyway I'll try to keep yern in the 411.

Be good to each other,

Chris

Visit from the Lama

  The Lama chaplain came by today to do some medicine Buddha mantras with me and offer advice when it comes to sickness.  Great meditation session and embracing the idea that purifying my past karma and dedicating my suffering to others so that they may be healthy puts a good spin on my attitude of this whole matter.

   I was home for maybe two days and I couldn't tolerate normal food and starting vomiting again so I had to come back in.  Hopefully I only have a couple more days left here.

Home

Well the light at the end of the tunnel finally came, after the holidays of course.  But whatever.  If you don't have kids or you're not a grandparent, Christmas is really about materialism.  With children there's so much more.  And New Year's is just ' another reason to drink' holiday.  

   So the final day I'm there I start getting that bad heartburn/gas pain in my chest while I'm sleeping.  I'm thinking , oh shit not again.  Cause last time I was ready to leave everything was packed up, Sarah was on her way and then Wabam!  I started ralphing again and had to stay a couple more weeks.  So I'm actively dealing with this...(see Facebook video). As I'm dealing with this, Mr Wei's family start in on this frantically emotional prayer circle around him where everyone gets a solo.  There are moan of agreement and disagreement like in a revival tent; but smaller and in Mandarin.  

   Anyway back at home now and loving it.

"Don't it always seem to go , that you don't know what you got till it's gone."-Joni

Goodbye David....man you were interstellar.  A real starman.

Nor-Easter to Georgia lemonade sipping summer time.

I just want to say for the record that's kept on the highest shelf in the tallest building in that desolate land you never heard about;  that sometimes ....you never....never ever ever...........ever.......know.  

  That being said I didn't know as I was hanging in the solarium meditating having just hung out with a Lama who's been coming to see me.  He's helping me with my Bodichitta and with patience.  I went back to my room and laid down...started watching Schindler's List.  All of a sudden I am shivering like a mad man...."I can't get warm enough!  I can't get warm enough!"  I ask for another blanket and a temp reading....97.7 on your fm dial means your fine.  I wasn't.  Did a temp reading a half hour later 103....BOOM.  Fever time.  Turns out all that stupid phlegm I've coughing up all week finally got around to dropping the bomb on my lungs.  Tylenol , Chest X-ray (I had to go downstairs they couldn't bring the droid up) urine sample , phlegm sample.  I took all my blanket down with me to the basement.  I looked like a retired Sith Lord .  This technician guy walks in while I'm waiting for the X-ray .  I don't even look up as I am dozing but I smell him....smells good.  "Somebody smells good." I say out loud. He's like ' yeah it's Egyptian musk'. 'Nice.'  Some women behind says ' yah he flew all the way thayah just ta get it'. ' I bet you found it at the bottom of some triangle in the desert' I say...and that tickled his ribs.

So now....3am ...fever broke and it's a Georgia summer in my room with Mr. Wei.  You never

EVER

Know.

Bad nurse BAD!  That chick sucked at dressing.

Needles, tubes, and Noobs. Part one.

I remember when the thought of going for a check up at the doctor's was accompanied by a mountain of anxiety of getting a shot.  I'd sit on the table bed with the paper cover...."let me look in your ear...yes yes...say 'ahhh'"  Knowing the inevitable was coming my heart rate would slowly increase throughout the appointment.  When it came time I'd beg and plead, start crying, and then eventually 'boy-up'.  The adult equivalent of " OW!  Son of a bitch!"would be thought and I'd be on my way with a red flag lollipop.

Now...you could drive a 3/8 inch tube down my nose and into my stomach and I wouldn't bat an eye.  This past couple weeks I have had a lot of these annoying invasive tubes on top of the ones I currently deal with.

   The feeding tube, through which an ensure type beverage is piped into my colon runs from my right nostril to my colon.  There is also an anchor ; which is two tiny pieces of plastic that come together through the septum hole in your nose.  My anchor became lose and the tube slipped back into my stomach- which is a problem. My stomach was filling up with nutrients and not given enough time to digest it...so it would just come up (politely speaking).  When the reinsert it, the doctors have to put a very small metal wire to help keep it stiff as they push it back into the colon.  This is painful and I can only imagine I sound like Arnold Swarzanegger (sp) while they're doing this.  The doctor keeps saying to me "Think of your favorite food....think of you favorite food....THINK OF YOUR FAVORITE FOOD!"  Scrambling my mind thinks of beef stroganoff .... Finally I'm like "why do you keep saying that! Is it suppose to cheer me up?"  Apparently when you think of your favorite food it cause the doors to the abyss to open a little.

When when when.

I don't know if there is a light at the end of the tunnel when it comes to this current hospital stint.  And what's unnerving is, so far the doctors don't know either.  I feel like I'm in the opening of Beckett's Molloy:

“I am in my mother’s room. It’s I who live there now. I don’t know how I got there. Perhaps in an ambulance, certainly a vehicle of some kind. I was helped. I’d never have got there alone. There’s this man who comes every week. Perhaps I got here thanks to him. He says not. He gives me money and takes away the pages. So many pages, so much money. Yes, I work now, a little like I used to, except that I don’t know how to work any more. That doesn’t matter apparently. What I’d like now is to speak of the things that are left, say my goodbyes, finish dying. They don’t want that. Yes, there is more than one, apparently. But it’s always the same one that comes. You’ll do that later, he says. Good. The truth is I haven’t much will left. When he comes for the fresh pages he brings back the previous week’s. They are marked with signs I don’t understand. Anyway I don’t read them. When I’ve done nothing he gives me nothing, he scolds me. Yet I don’t work for money. For what then? I don’t know. The truth is I[…]”

Excerpt From: Beckett, Samuel. “Three Novels.” Grove Press, 1947. iBooks. 

I went down to radiology yesterday for a contrast dye MRI.  They didn't tell me that I should be ready to drink 4 cups of a dye enhancer.  I drank half of one bottle and I thought if I drink anymore I'm going to boot.  Sorry MRI ladies.  They were cool with it though.

I had a break down a couple of days ago in front of resident Doctor Javier.  He was like 'how do you feel?' And I stupidly off the cuff said "I feel like blowing my brains out".  Let me tell you don't ever say some like that in a hospital.  I visited by the three psychiatrist of Christmas past , present , and future.  I did get my name on a Buddhist monks list for a visit though...so that's cool.  

   I'm currently sharing my room with Mr Weh, 1st gen Chinese American.  He's cool and I never thought I'd meet someone that get's chillier that me I'm roastin' in this room.

Let's........make this Christmas...mean something....this year.

    Christmas in the hospital.  I know , cry me a river.  I spent most of last night and Christmas barfing.  Another damn bowel obstruction.  Let's just say after not having food for awhile I went crazy.  On th 23rd I ate a ton of food.

    Bonedaddy stopped by around 2pm and gave me some wonderful gifts from him and Rebecca.  Walrus t-shirt from the Quontset hut and some more tubes to put into my face.  They're so thoughtful.  Then Sarah stopped by at 6pm with some bad chow mein for herself and we snuggled and watched Bad Santa...which was great.

So I'm not complaining.

Love to all

News.

Good news and bad news.

I'm going home today on Christmas Eve...not that I have the Swiss Family Robinson to go home to but I have Sarah and Suzy and that's a million times better.

Annnnnd the bad news is, is that I can't qualify for a 'live donor' because the tips is too close to my heart and would cause a high risk in the transplant procedure.  The tips runs from the portal vein at the bottom of the liver , through it (I think) and close to the vena cava which is a major vein at the bottom of the heart.

So this means , (most likely) that I need to get super sick before I can get a liver.  Like , on death's door.  Not to mention I need to wait for that to happen which is a huge financial burden.

But until that happens it's good things like batman and Frank Miller:

Clear Liquid feast!

They upgraded me from nothing to a clear liquid diet!!  What is a clear liquid diet you might ask.  It consists of this 'smorning of black tea with two sugar packets, raspberry sorbet cup (got to eat that first cause it'll melt) , the entree : chicken stock with sodium substitute (though I asked for beef), lime green jelly cup , apple juice cup.  Man it was like thanksgiving after not having food for 2 1/2 days.  I felt like Saint Austine surviving on garlic to make it through the winter.  It also reminded who me of these two ex-convicts who rehabilitate prisoners being release into the world.  In this show that they're in they're sitting in a car awaiting the prisoner to be released so they can collected him and the two guys start reminiscing about all the things they used to do to prison food to make it tolerable...including squandering away goods for later.  I think the show was on Aljazeer network.

  Other than that it's a greenhouse Boston Christmas and I'm chillin' in Farr 10 room 1024 with some cabbage rolls in the Dutch oven.

Best

NO FOOD or DRINK!

    Food and drink are, in the hospital a big morale booster.  When they withhold it from you it is a major bummer.

   So current sitrep:  My roommate is hacking up phlegm non-stop and he's a rude bastard at time to the staff which irritates me.

I still have the stomach draining tube in my left nostril.  They may pull it out in a couple of hours if nothing is draining.  The nurse Laura, as per instruction last night pulled out my catheter because it wasn't draining properly and then she fuhts with it.  So they're going to put one back in soon...because apparently I'm close to having 300ml of fluid in my bladder that needs to come out.

Other than that just playing around with the new iPad.  Got a great drawing program: 

Bowel obstruction...happy holidays!

So here I am again at Beth Israel ER room awaiting a bed to open up in Farr 10.  It's been quite lively here today between the woman from somewhere screaming something unintelligible to the man screaming at the top of his lungs 'I WILL NOT GET A FLU SHOT' over and over again.  The man currently in the curtained off room next to me is begging for pain killers because his hip is attawack.  

    I have a 3/8" tube up my left nostril sucking the contents of my stomach into a plastic 'carboy'.  Apparently I developed a bowel obstruction at some point last week and this has been the reason behind the week long barf sesh.  And here I was thinking I was eating too much Cocoa Puffs...as if.  (Man I could really go for a bowl right now....or maybe just a glass of whole milk that's been stepped in puffs...yum). I'll have to get Sarah to smuggle some in for me.

Man I look so good!  

The tape is there to keep it from sliding out of my nose.  The other tube is my feed tube which feels infinitely better than this monstrosity.

Currently reading: The life changing magic of tidying up, Marie Kondo and Undermajordomo Minor, Patrick Dewitt...Also rereading Lolita for the third time.  Marvel comics:  Knight of the Old Republic collection.

Be well people and realize that you're well,

Love Esch

Losing weight!!! And easy money.

I'm losing weight because there is something terribly wrong with my feed tube.  5lbs a day...can you image?  To top it all off I'm shedding skin again cause I've shrunk.

   Yeah so I put the feed bag on in the morning and by mid-day there is something horrible going on in my stomach.  I stop the feed tube and boot it all up; which doesn't make since because it should be bypassing my stomach and going straight to the large intestinoins.  My first thought is that my schincter has betrayed me!!

    The doc's and nurses are slow to get back to me on this so I'm waiting.  Mean while it's back to eating food again.  Damn!  I was really get use to not masticating or feeling full or hungry.  Being on that feed bag was like the feeling I get after a California roll and a tuna roll (tekka maki!).  It was one major desire gone from my life....hunger and yet I gain 20lbs in a week.

Want to say that I joined a gym about a week ago but I was told by my nurse that I joined a club.  Zowie!  This place is the best!  I mostly joined (for 35 a month) for the steam room/sauna combo but it has plenty of cardiac machine and weight machines.  8 showers with body soap/shamp/condishy.  I tell you northern NH want to be small business owners....open up a membership sauna/ steam room / showers facility .  Screw the exercise cause you'll be getting that just living up there.  Want NHshins need is a place to let there muscles melt and a hot foggy room where you're invited to put eucalyptus oil on the steam nozzle.  Easy money...

Thankful

To be home again with my partner

To be alive

To have people in my life that care so much

For my new friend who was at deaths door and now has a liver

For my pops

For Suzy

To be gaining weight

To the Buddha the Darma and to the holy community 

My family

Farr 10 battalion.

Dr Bruce Banner and the dyed CT scan.

"Contrast given through an IV may cause a slight burning feeling, a metallic taste in the mouth, and a warm flushing of the body. These sensations are normal and usually go away within a few seconds."https://www.nlm.nih.gov/medlineplus/ency/article/003330.htm

Ha Ha....yeah right.

Okay so it's 12am in the Beth Israel Rosenberg building on the 25th.  Cats; technicians and Doctors are spent and they keep getting orders for this test...that test.  Richard takes me down to the radiology.  He's has the same birthday but he's a year older and he rubs it in my face cause he looks good for 41...soon 42.  "  Island fruits man"  he says  I made a comment about a large dude down the hallway walking they way large fat man walk.  "  That's M.  , he keeps telling me he's going to lose weight;  but he just gains more weight.  He eat everything he sees!"  Laughing we roll up to the CT scan line up...few people in front of me.  Some kooks.  Two women behind me discuss Property size as compared to location to the city.  Older woman got a new whirlpool with her husband recently.

   Now I got a brand new, right off the lot IV for this procedure by a woman I consider to be a master of her craft.  So it should be good to go...i.e. no pain.

   My turn,  nobody briefs me.  I lay down on a sliding bed similar to an MRI scan.  They techs hook in the IV and start Juicing me with Saline...really pain full if it's fast.  "Fuckin' ow!"

' That's how fast the contrast dye is going to be sir'  still juicing me
" yeah just a little warning please"
'okay'  said as if I'm being belligerent.

So they roll me into the machine and say the first shots are with out dye.  You have to hold your breath while they take the images.
  
Next  ' we're going to flush with saline sir then we'll use contrast.   You'll feel a burning sensation.'

Burning?! 

Then they start juicing me...painful...slowly something very toxic is in my system.  This burning starts in the rectum and quickly enrages my body with a hot lave sensation.

{machine voice}  'HOLD YOUR BREATHE............................BREATHE'

This happens for five minutes....and let me tell you it is not easy to hold your breath when you're going beserker.

Tubes part two

Hanging with the urologist went well- though the strapping young lad made comment on my stretched out bladder walls.  Psst!

I checked in at Farr 10 at 6pm on the 18th to get a feeding tube put in me.  My body weight was down to 98 lbs at one point last two weeks ago.  Scary when you're taking a shower.  This tube will pump 2K calories into me everyday...and help me get back on track for a liver transplant.  They tell me that will happen in the morning.  Fine.  At Beth Israel, blood is taken around 5am so the Docs can assess any problems , hopefully before they begin.

  The Doctors come in the next morning , 19th and tell me that it looks like there is some bleeding in the lower intestine...due to blood not being able to properly flow through the liver there is a pressure created.  I believe it was decided that they were going to investigate with a camara and if it didn't look like a big deal then they would put in the tube after since I'd be knocked out.  I wake up and there is a tube in my nose...guess it wasn't a big deal.  They start me at 20ml an hour (I think that's the rate) of nutrint goodness.   An hour later I start getting crazy heartburn which is never a good sign.  But I'm hoping that it's just gas from force feeding.  I sit up and try to burp and puke up 3/4 cup of bloody vomit.  Wowie!  So the doctor's are thinking that bleed is more signifgent they they thought...so how to they go about about dealing with this.  Two hours go by and the think tank's wheels are spinning....and I'm getting that crazy heartburn feeling.  Widline, my PCT that day ...can't take the state of my bed and want's to clean it...change the sheets ..et cetera.   So I sit down in a chair with a basin in case this turns out to be vomit again.  Sure enough a quart of bloody vomit comes out into the basin.  It's kind of surreal sitting with a basin of blood surrounded by medical professionals.  At the same time I felt like the dog who peed on the rug.

    It's decided that I need a TIPS A.S.A.P. :
"A TIPS procedure involves creating a pathway through the liver that connects the portal vein (the vein that carries blood from the digestive organs to the liver) to a hepatic vein (one of three veins that carry blood from the liver to the heart)."

I woke up the 21st in I.C.U. recovery.  Second time I almost died in this building.