Well kiddos, it's been very long since I've kept proper upkeep of this side of the blogoverse and I apologize to the faithful supporters of what I'm trying to do here for the complete lockdown and blackout over the past few months. There have certainly been many goings on and blog-worthy bits of living going on and I'll try to get everyone up to speed on what's been happening in the world of Mr. Padraig.
For those not in the know (otherwise known as my immediate family and circle of friends) I was a guest of the Lahey Clinic from September 16th to early December. I missed the fall. I missed the first snowfall of the year. I missed meeting Kelley's grandparents and other family members. I missed a lot of goings on with family and friends. Wait. Y'know, what? That doesn't work. I'm not doing that. Wrap your head around this kids: I spent three months straight in a rather nice hospital room under fairly heavy medication and underwent a fairly major surgery. My loss of organ count now stands at half a pancreas, a few feet of intestine and my appendix. The good thing about that is I am no longer a slave to the colostomy bag but I've had the unenviable position of having to rely on tube feeds for my nutrition, especially lately, because I keep vomiting most of what I manage to put down in the course of a day which isn't all that much to begin with. Out of the hospital but not out of the woods, it would seem.
Speaking to that, Kelley and I took a trip to the Wentworth-Douglas ER last night because I've been vomiting daily for weeks now and nothing seems to be helping or working. It was kind of weird being back in there, especially because after awhile I got to know everyone that worked in triage but it was all new faces so I had to re-explain my very long history to a new nurse. It's sad when you go in so often that you know everyone but it's convenient because it saves time explaining everything. Anyhoo, we got a room fairly quickly and they started the whole process: blood work, saline drip, nausea and pain meds. I was blessed with Dr. Lydon which was very helpful because he's very no-nonsense and knows me and my condition(s). He ordered an X-ray to make sure things were where they needed to be and there was a first there because he put contrast dye down my feeding tube so my insides would light up like Christmas morning. After a few hours and getting all of my tests back he couldn't figure out why I was getting so sick but made a point to call Dr. Marcello's office to bump up my next appointment.
Oh, wait, this is now a few weeks later and that whole bumping up the appointment turned into MY FIRST LAHEY VISIT OF THE NEW YEAR. Nearly two weeks to reveal that: I was sick and we couldn't figure out why.
...
I thought 2012 was going to be different and that My Hospital Year was over. Hahaha. Hahahahahahahaha.hahahahHAHHAhahahahhahahahHahhaHAHHhHEHEHEheehEhehehehehTeeeHEHhehehehehhhhahahahahah.
No.
Not quite, Mr. Sickboy.
I just want to break you down so badly in the worst way.
I'm gonna MAKE DAMN SURE that you can't ever leave.
You won't EVER get too far from ME.
This is the soundtrack to my love/hate relationship with hospitals and I'd like to thank the gentlemen, especially Mr. Fred Mascherino, (for certain personal reasons,) in TBS for penning my personal hospital anthem oh so many years ago. As a bit of cosmic jokery (yes, I'm aware that's a bogus word. I do play a shitload of Scrabble, y'know) the universe decided to put me in the very same room I inhabited at Lahey back when I first got the ostomy and with that, some of the very nice and not so nice nurses that took care of me.
That's something that bugs me and not sure if I've addressed it in the blog yet but I have WAY more liking and support of nurses than I do doctors. Yes, doctors, especially surgeons (thanks for the whole life-saving stuff, guys) perform very specific and essential tasks that benefit lots of people. Bravo. However, nurses do 95% of the legwork and get almost none of the credit. Doctors largely perform their work behind closed doors in ORs and offices and the like while nurses are down in the trenches with you, taking care of your every need and want. Well, let's not get carried away, not EVERY need and want. But almost all of the day-to-day care belongs to nurses and my hat is off to the fine ladies and gents that fulfill these duties. My life would have been quite different the past thirteen months without these fine individuals. If I could remember all of them by name I would thank them all individually but unfortunately I cannot so, as a blanket statement: wonderful nurses of Wentworth Douglas Hospital and Lahey Clinic, THANK YOU. Hell, thank anyone who is or ever was involved in the nursing profession.
I'm going to cut things short for the night because, well, I don't much feel like raking the muck of my memory for much longer tonight. I promise to write something further sooner than later.
later.
PS. I apparently started writing this post on December 30th and it took me...about a month to finish. Mazeltov.
Friday, December 30, 2011
Monday, October 24, 2011
Quick Update: 10.24.11
It's 3am and I was just rudely awakened by my asshole of a colostomy bag. In my deepest sweet slumber Bob (from here on out I'll call my bag Bob. Why? Because sometimes Bobs are just full of shit) decided to rebel and leak nasty waste/fluid all over my abdomen and legs. This is not an uncommon thing in the grand scheme of colostomy because the bag system has essentially three parts:
The adhesive: skin contact paste and/or an Eakin seal, which is a disc made of adhesive foamy, rubbery material. This marries the skin to...
the flange: another adhesive disc surrounded by adhesive tape for skin contact and on the top side a plastic coupler ring designed to create an air and fluid tight seal with...
the bag: just what it sounds like, a plastic or vinyl bag with a velcro sealed end for waste disposal and sometimes an air vent to slowly disperse gas so it doesn't fill with farts constantly. These things together create a nigh-impenetrable fortress of protection against the waste tunneling through your colon.
The problem with this system is the adhesive on the skin side is entended to block solid or semi-solid waste from leaking, not fluid. Even the sealiest of seals breaks down when constantly being faced with liquid waste and for the past five weeks my "food" has been almost entirely liquid. Liquid in = liquid out. It's only a matter of time before the adhesive gives way and leaks happen. This almost always happens to me at night while I sleep so I end up with the enviable surprise of being covered in liquid shit upon waking. Luckily for my nurses and I I'm used to this eventuality so it's not a big deal to get up, towel off and change the bag while they change my sheets/bed and clean up whatever drips followed me to the bathroom. This particular instance was odd because the consistency of the waste was like that of wet, soppy oatmeal. Mmmm...Quaker Ostomy Discharge.
Anyway, now I'm cleaned up, washed, disinfected and newly bagged. Hopefully this is not a sign of things to come as my life already has enough shit going wrong already. I would have posted informative pictures to illustrate the mechanics of a colostomy bag but this computer/tablet is crazy and I'm still not entirely sure how to use it correctly, at least for writing purposes. That's it for now, sorry if this information was gross and/or off-putting but I'm not in the business of candy-coating things, especially candy-coating bodily waste. Yum. Makes you think about chocolate differently, eh?
The adhesive: skin contact paste and/or an Eakin seal, which is a disc made of adhesive foamy, rubbery material. This marries the skin to...
the flange: another adhesive disc surrounded by adhesive tape for skin contact and on the top side a plastic coupler ring designed to create an air and fluid tight seal with...
the bag: just what it sounds like, a plastic or vinyl bag with a velcro sealed end for waste disposal and sometimes an air vent to slowly disperse gas so it doesn't fill with farts constantly. These things together create a nigh-impenetrable fortress of protection against the waste tunneling through your colon.
The problem with this system is the adhesive on the skin side is entended to block solid or semi-solid waste from leaking, not fluid. Even the sealiest of seals breaks down when constantly being faced with liquid waste and for the past five weeks my "food" has been almost entirely liquid. Liquid in = liquid out. It's only a matter of time before the adhesive gives way and leaks happen. This almost always happens to me at night while I sleep so I end up with the enviable surprise of being covered in liquid shit upon waking. Luckily for my nurses and I I'm used to this eventuality so it's not a big deal to get up, towel off and change the bag while they change my sheets/bed and clean up whatever drips followed me to the bathroom. This particular instance was odd because the consistency of the waste was like that of wet, soppy oatmeal. Mmmm...Quaker Ostomy Discharge.
Anyway, now I'm cleaned up, washed, disinfected and newly bagged. Hopefully this is not a sign of things to come as my life already has enough shit going wrong already. I would have posted informative pictures to illustrate the mechanics of a colostomy bag but this computer/tablet is crazy and I'm still not entirely sure how to use it correctly, at least for writing purposes. That's it for now, sorry if this information was gross and/or off-putting but I'm not in the business of candy-coating things, especially candy-coating bodily waste. Yum. Makes you think about chocolate differently, eh?
Tuesday, October 18, 2011
Quick Update: 10.18.11
Sorry kids, not a proper post this time but a quick update. We're now well into week four of the current Lahey visit and back to square one. We tried in vain to insert a peg tube into my stomach so my feedings would be much less prone to problems and discomfort but sure enough my body said "Hells no" and wasn't having it. Back to the old nose grind. Interventional Radiology could step in and try to put it in but the way my insides are acting it may be better to err on the side of caution thi time.
Also, since I've been here they've been routinely assigning student nurses to my case so they get hands on experience and let's face it, with my fun time grab bag of ailments and injuries, plus the fact that I'm not an invalid and can hold conversations with these people, makes me a perfect candidate for student nursing. Normally I don't mind because they students are helpful, attentive, and generally know what they're doing.
Except today.
Today I have a perfectly nice young gentleman, let's call him "Mike," who I think swapped the analytical portion of his brain for a bag of kittens this morning before coming to the hospital. Part of me feels badly because he's a greenhorn and hasn't had really any experience with patients, much less patients with as much going on as me but it's really hard for me to hold my tongue when he just doesnt grasp fundamentally simple things.
Example: I currently have two kinds of nutrition running, TPN through my pick line/IV and tube feeds through the feeding tube in my nose. TPN is very thin, comes in a bag and runs into my arm. Tube feed is more viscous, dark (looks like Yoo-Hoo) and runs into a tube in my nose. TPN = arm. Feed = tube. TPN is supplemental nutrition that I get when a. I can't eat and b. have no tube feeds. It runs at a high clip for 12-24 hours and comes in a massive bag. The tube feed runs a bit slower but we build it up over time. To make a long story short he thought my tube feed was my TPN and was mistaking all of my orders and switching them so if I and/or the nurse didn't intervene I would currently be getting no nutrition after a massive jump in tube feeds that woud have assuredly caused me huge discomfort, nausea and vomiting. As I've said before, I'm no doctor but in this case with this young man I truly do know more than him about this stuff and it kills me to get treated by someone who straight up has no idea what they're doing. Sorry Doogie Howser, not today.
I'll dive into the full, detailed account in a bit but just wanted to get that off my chest for now. I promise we have an epic story/account of events coming considering I'm almost into week five of what should have been a pretty routine hospital stay.
Until then, as always, thanks for reading kiddos.
Also, since I've been here they've been routinely assigning student nurses to my case so they get hands on experience and let's face it, with my fun time grab bag of ailments and injuries, plus the fact that I'm not an invalid and can hold conversations with these people, makes me a perfect candidate for student nursing. Normally I don't mind because they students are helpful, attentive, and generally know what they're doing.
Except today.
Today I have a perfectly nice young gentleman, let's call him "Mike," who I think swapped the analytical portion of his brain for a bag of kittens this morning before coming to the hospital. Part of me feels badly because he's a greenhorn and hasn't had really any experience with patients, much less patients with as much going on as me but it's really hard for me to hold my tongue when he just doesnt grasp fundamentally simple things.
Example: I currently have two kinds of nutrition running, TPN through my pick line/IV and tube feeds through the feeding tube in my nose. TPN is very thin, comes in a bag and runs into my arm. Tube feed is more viscous, dark (looks like Yoo-Hoo) and runs into a tube in my nose. TPN = arm. Feed = tube. TPN is supplemental nutrition that I get when a. I can't eat and b. have no tube feeds. It runs at a high clip for 12-24 hours and comes in a massive bag. The tube feed runs a bit slower but we build it up over time. To make a long story short he thought my tube feed was my TPN and was mistaking all of my orders and switching them so if I and/or the nurse didn't intervene I would currently be getting no nutrition after a massive jump in tube feeds that woud have assuredly caused me huge discomfort, nausea and vomiting. As I've said before, I'm no doctor but in this case with this young man I truly do know more than him about this stuff and it kills me to get treated by someone who straight up has no idea what they're doing. Sorry Doogie Howser, not today.
I'll dive into the full, detailed account in a bit but just wanted to get that off my chest for now. I promise we have an epic story/account of events coming considering I'm almost into week five of what should have been a pretty routine hospital stay.
Until then, as always, thanks for reading kiddos.
Thursday, October 13, 2011
Quick Update: 10.13.11
I've been back at Lahey since September 16th (so four weeks as of tomorrow) with no end in practical sight. I've been fighting with my stomach/colon to get nutrition in me and as soon as we find a solution something else goes wrong. I'll go more in depth later, just wanted to put something quick up because it's been far too long. The shorthand?
I am very, very frustrated with the doctors/treatment for the first time and it's making this stay pretty unpleasant. Hopefully some progress can be made so I can finally go home and stay out of here until my colorectal reallignment surgery. Fingers crossed.
Until next time, be thankful for properly functioning organs, kiddos.
I am very, very frustrated with the doctors/treatment for the first time and it's making this stay pretty unpleasant. Hopefully some progress can be made so I can finally go home and stay out of here until my colorectal reallignment surgery. Fingers crossed.
Until next time, be thankful for properly functioning organs, kiddos.
Thursday, September 15, 2011
Part Fifteen: The fifteenth part.
It seems as time goes I become less and less prolific when it comes to posting things here. It's not for lack of material though as I go further from the source memories tend to get hazy, especially when those memories are of times where I was heavily medicated. Part of this lack of motivation is because I don't know what works, what goes over well, what I should leave edited out, etc. From talking to friends I've gathered that when I write about things I don't remember saying or dreams I had it's entertaining and goes over well, whereas some of the more serious bits don't get much of a reaction. Does this mean I should stick with what apparently works and disregard the rest? Not so much. Being a jester's fine, but I'd rather be a bard.
Alright, my brain is getting scrambled from listening to Kanye's "Monster" on repeat ten times or so. I can't say I'm much of a Nicky Minaj fan but damn, girl tears it up on that track.
Since I've spent much of my year on a hospital bed and/or down for the count it's been important to me to get my strength back and be up and active. Mostly this involves jaunts Kelley and I make to the library, grocery store, laundry runs, etc. as well as walks around my neighborhood and downtown. Nothing too strenuous, I'd say a mile to two at a time. Last week was a bit more than usual: Wednesday Kelley and I took a day trip to Salem, MA to see the museums and some of the historic sites.Thursday was another Lahey appointment to see Dr.'s Pomposelli and Piessens which went fairly well; Piessens took me off of antibiotics and though he wanted to, Pomposelli left in my JP drain because despite barely draining 20ml's of fluid every few days, what is draining out is pretty nasty. Ugh. Would you like to know how it feels to have this drain in? Picture being stabbed with a long, thick needle, almost constantly and every time you move the needle jostles and digs in deeper. Yup, that's life with my latest and worst JP. After coming home from Burlington Kelley and I got ready for our weekend trip to Northampton, MA to visit her sister, Liza and her boyfriend Mike. Liza works for the library at Greenfield Community College and Mike is a teacher of the wee children at a local school. We first arrived at the college to see their new library building: a $33 million structure that may as well be gilded in 24 carat gold. As part of their green initiative (haha, Greenfield...green initiative...it works!) the building is both geothermal and solar powered, uses dynamic lighting systems to decrease power usage, etc. After a quick tour we played what was all of our (Kelley, her parents and myself) first game of Bananagrams. Apparently these library folk are pretty cutthroat but being quite the word geek myself it wasn't too intimidating. After that we killed time at our hotel and met Liza and Mike at their apartment where we also met Liza's adorable kitty Walnut. I was told he was bigger than our boy Zombie but not quite. Zombie's a big ass cat.
Zombie.
That night we had dinner at Mike's parents' restaurant, Paul and Elizabeth's, in downtown Northampton. It's one of the two oldest restaurants in town, serves mostly local, organic and vegetarian fare and serves without a doubt some of the best food I have ever had. From the antipasti to the entrees it was straight up delicious. Highly recommended. After that Kelley and I hung out with Liza and Mike for a bit more than retired to the hotel. Fell asleep watching Storage Wars. God bless hotels and terrible television. The next day we did a bit of walking and milling about at this sprawling park in town, specifically to watch some hot air balloonists and visit a tiny "zoo" set up within the park. There was supposedly a wee deer, which we didn't see, sheep, some falcons, lots of chickens, a turkey, peacocks, and a bald friggin eagle. I thought it was illegal to have them in captivity or something along those lines but the fine, Earth-loving folk of Northampton have one locked up in a ten by twenty cage. Do I sense allegory to the state of freedom in this country? Probably not. From there it was a visit to the community gardens where Mike and Liza have a plot where they grow veggies and some flowers, lunch with everyone plus Mike's father Paul where we had amazing potato, red pepper and garlic pizza. We took pics, hugged and kissed goodbye and off home we were.
All told I probably walked miles over those few days and thankfully didn't feel the least bit overexerted from it. Sure there were the usual aches and pains but it wasn't as if I ran a marathon or anything. Maybe I am getting my strength back after all this time. I haven't yet tried to seriously heft Kelley's 104.2 pounds since all this hospital business started but I'm getting there. Speaking of, as I may have touched on before, one of the side effects of all this sick stuff has been my rapid then steady now plateauing weight loss. 235 to 165 in a matter of months. Smallest I've been in my adult life. The reality of it hits me every so often, like today when Kelley and I went to Goodwill I picked up a small Gap button-down and it fit like a glove. Maybe things have changed over the years but I always remember Gap sizes running small. Damn, it's weird putting that thing on. Or sometimes I'll catch myself in a pane of glass or a mirror and just think "holy SHIT I got skinny." It's even more evident when I run into folks who haven't seen me for awhile and the immediate reaction is just "wow." Eerie.
I bring this up because Kelley has mentioned that we used to be a cute couple because I was so much bigger than her and now we could almost swap some clothes. I disagree and say we're still a cute couple.
(Just kidding a little bit there, she still thinks we're super cute...but she DID say those things.)
Ok well I'm trying to deal with some God-awful pain tonight and it's almost time to turn in and continue reading Harry Potter. I'm about 250 pages into The Half-Blood Prince now and Kelley's on me to finish. Until next time, take care of yo' bad selves.
Alright, my brain is getting scrambled from listening to Kanye's "Monster" on repeat ten times or so. I can't say I'm much of a Nicky Minaj fan but damn, girl tears it up on that track.
That night we had dinner at Mike's parents' restaurant, Paul and Elizabeth's, in downtown Northampton. It's one of the two oldest restaurants in town, serves mostly local, organic and vegetarian fare and serves without a doubt some of the best food I have ever had. From the antipasti to the entrees it was straight up delicious. Highly recommended. After that Kelley and I hung out with Liza and Mike for a bit more than retired to the hotel. Fell asleep watching Storage Wars. God bless hotels and terrible television. The next day we did a bit of walking and milling about at this sprawling park in town, specifically to watch some hot air balloonists and visit a tiny "zoo" set up within the park. There was supposedly a wee deer, which we didn't see, sheep, some falcons, lots of chickens, a turkey, peacocks, and a bald friggin eagle. I thought it was illegal to have them in captivity or something along those lines but the fine, Earth-loving folk of Northampton have one locked up in a ten by twenty cage. Do I sense allegory to the state of freedom in this country? Probably not. From there it was a visit to the community gardens where Mike and Liza have a plot where they grow veggies and some flowers, lunch with everyone plus Mike's father Paul where we had amazing potato, red pepper and garlic pizza. We took pics, hugged and kissed goodbye and off home we were.
All told I probably walked miles over those few days and thankfully didn't feel the least bit overexerted from it. Sure there were the usual aches and pains but it wasn't as if I ran a marathon or anything. Maybe I am getting my strength back after all this time. I haven't yet tried to seriously heft Kelley's 104.2 pounds since all this hospital business started but I'm getting there. Speaking of, as I may have touched on before, one of the side effects of all this sick stuff has been my rapid then steady now plateauing weight loss. 235 to 165 in a matter of months. Smallest I've been in my adult life. The reality of it hits me every so often, like today when Kelley and I went to Goodwill I picked up a small Gap button-down and it fit like a glove. Maybe things have changed over the years but I always remember Gap sizes running small. Damn, it's weird putting that thing on. Or sometimes I'll catch myself in a pane of glass or a mirror and just think "holy SHIT I got skinny." It's even more evident when I run into folks who haven't seen me for awhile and the immediate reaction is just "wow." Eerie.
I bring this up because Kelley has mentioned that we used to be a cute couple because I was so much bigger than her and now we could almost swap some clothes. I disagree and say we're still a cute couple.
(Just kidding a little bit there, she still thinks we're super cute...but she DID say those things.)
Ok well I'm trying to deal with some God-awful pain tonight and it's almost time to turn in and continue reading Harry Potter. I'm about 250 pages into The Half-Blood Prince now and Kelley's on me to finish. Until next time, take care of yo' bad selves.
Sunday, September 4, 2011
Part Fourteen: A Little Help
My original idea for this post was to detail the history of my life as a musician and how that indirectly led to my pancreatitis. I've been laboring over that entry for over a week now and it just doesn't seem to be coming together in any kind of organic way so I've abandoned it. My idea was to tie together my old bands and friends with my life now using my benefit show as a kickoff point. See, back in March my old bandmates in The Minus Scale along with friends in bands we used to play with put on a benefit show for me and apparently it was a resounding success. It sold out, the crowd loved it and a good bit of money was raised. I am blessed with all of the goodness that people have thrown my way this year and throughout my life in general. Unfortunately my pancreatitis decided to step in and I missed the show because I was hospitalized yet again.
Now, a little history as to why this show and these people getting together to help me out touched me so deeply. Without going into the entire People's History of Padraig Murphy's Musical Career I spent three years playing with The Minus Scale and let's just say things didn't end beautifully. We eventually made amends and I still count them amongst my friends; Ryan and I are starting work on some music I've been writing within the coming weeks. That's one of the great things about shared experience, especially if those experiences involve sleeping on strange floors, logging scores of road miles and living in very close quarters for weeks at a time. I know any one of us could call up the others in thirty years and no matter where we are or what we're doing it'd be like no time had passed. Anyway, back to the subject at hand.
When I found out about the benefit show I was floored, especially when I discovered that it was AJ's idea. Or at least he was organizing it. Of everyone in the Scale when I was involved (AJ, Ryan, Pat, Derek, for a time Mark) AJ and I were the least close despite the fact that we lived together for a year and he and Ryan asked me to join in the first place. I could never put my finger on it but it wasn't like there was friction or anything. AJ's a particular sort of guy and maybe our energies never clicked. He's very methodical and super organized and I'm definitely not. You could almost say I always felt a sort of disconnect or coldness between us so the fact that this special show was in his hands really warmed my heart. Quick story: the first and only compliment I think I ever got from him regarding my music was his comment that the name I came up with for my solo project, Building A Better Robot, was a good name. Three years and that was it. (AJ, if you're reading this and I'm wrong, I apologize!) He had been in contact with my father asking if it was ok that they wanted to do this, where to send the donations, etc. and my father told me while I was still in the hospital. To sweeten the pot I was told the lineup for the show and was stunned to say the least. First, a reunited Minus Scale (though I wasn't going to be playing with them even if I was well and out of the hospital) but also a reunion of one of my favorite local bands, the Human Flight Committee. They had broken up in 2009 and aside from a one-off reunion in 2010 they hadn't played together since. Next there was Too Late The Hero, an amazing band from Maine and brothers-in-arms since my Our Last Summer days. They're very popular around here and I guess they jumped at the chance to help me out. Already three reasons for friends and fans to come out and rock. Originally a band who I'd never met nor heard, Man, The Reformer was supposed to play but had to back out. Replacing them was another band I didn't know, Arms Against A Sea but whom I thanked afterwards for donating their time and energy for my cause. Lastly but certainly not least of all was a dear friend, Cameron Gray. Back in my Our Last Summer days Cameron was the singer for our best friend band, Good Samaritan. He and I have known each other since 2003/2004 and in the years following the dissolution of his band he's made quite a name for himself as a solo artist. This was one of the most killer lineups I'd seen in years and couldn't wait to see it and thank all of these people for helping out. Sadly, my pancreas derailed me and I was forced to miss it. That seems to be a running theme for me this year, missing out on things due to my illness. All told, I've been in the hospital for Christmas, New Years, Valentine's Day, Saint Patrick's Day, the Fourth of July, and very nearly my birthday. I think I was hospitalized for Kelley and my anniversary as well. If I were to sit and count the days I've either spent more time in the hospital than I have at home this year or at least an equal amount of time in both places. That's pretty crazy when you think about it.
Maybe someday I'll be able to repay not just my friends and former colleagues but everyone who has donated to my cause, helped out Kelley or my parents while I was away, family friends, well wishers, everyone. I'd like to think that events like what happened to me bring out the best in people or at least help turn up the empathy meter. People tend to treat you differently when you've stared death in the face and lived to see the other side. Hopefully the goodwill won't end once I get better for real. You've got to admit, it's one hell of a way to reconnect when you start your conversation with "So...I almost died a few times this year and we might not have had a chance to talk again...how's your year been?" Either way, I'm glad I've gotten the chance to rediscover and rekindle old friendships. There's still one guy from my Old Life that I really want to get back in touch with but he's pulling the ol' Artful Dodger on me I think.
-------------------------
Every day I need to remind myself that I'm blessed and have made it out of a lot of hairy situations this year better than some people in the same position. First there was the pancreatitis and everything surrounding that but now I have the added bonus of a colon reassignment or whatever the doctors call it. During the installation of more JP drains during my last stay at Lahey (starting a little over a months ago) my colon was pierced and waste was spilling into my abdominal cavity. The doctors cleaned my insides out and had to remove a section of my colon so until they reattach everything I only work with a few feet of intestine as opposed to my whole GI tract. What does this mean? My intestine is brought up to my stomach and I've got a colostomy bag on my abdomen to deal with my waste. It's an odd thing to not be able to poop correctly. One of the side effects/bonus? bits to this is my body doesn't process things like fat, cholesterol, calories, etc. like normal people so until they reassign my colon I'm supposed to eat like a fat kid's fantasy. My nurse told me to add peanut butter to everything I can or if the food calls, cheese and bacon. The problem is because of this lack of processing I don't absorb things out of my food like normal people so I need to up my intake quite a bit. Normally I probably eat around 1200-1500 calories a day which is low anyway for a dude my size but now especially they want me eating closer to 4000 calories a day just to maintain weight. I've been dropping pounds like crazy and even though I'm not exactly a tiny guy it's a little disconcerting when I can't at least maintain weight. My diet has literally been cheeseburgers and pizza, peanut butter and shakes. I'm trying to eat healthy but I'm not supposed to eat any real raw fruits or vegetables, whole grains, beans or legumes, nuts, oats...basically things I enjoy eating. I'm trying to embrace this new experience but it's really hard. A good chunk of my year has been spent being NPO and my appetite isn't quite where it should be. I've never been able to stuff myself anyway because if I do, my stomach says "hell no" and things usually come back up. If anyone has any tips or ideas I'd love to hear them.
I think this blog entry got away with me and I'm not really sure what I'm trying to say with it. Maybe the theme is "I get by with a little help from my friends." That's fitting, right? Hopefully I'll get my clarity back soon and get back to writing good, clear and concise entries. Until then, thanks for reading.
Now, a little history as to why this show and these people getting together to help me out touched me so deeply. Without going into the entire People's History of Padraig Murphy's Musical Career I spent three years playing with The Minus Scale and let's just say things didn't end beautifully. We eventually made amends and I still count them amongst my friends; Ryan and I are starting work on some music I've been writing within the coming weeks. That's one of the great things about shared experience, especially if those experiences involve sleeping on strange floors, logging scores of road miles and living in very close quarters for weeks at a time. I know any one of us could call up the others in thirty years and no matter where we are or what we're doing it'd be like no time had passed. Anyway, back to the subject at hand.
When I found out about the benefit show I was floored, especially when I discovered that it was AJ's idea. Or at least he was organizing it. Of everyone in the Scale when I was involved (AJ, Ryan, Pat, Derek, for a time Mark) AJ and I were the least close despite the fact that we lived together for a year and he and Ryan asked me to join in the first place. I could never put my finger on it but it wasn't like there was friction or anything. AJ's a particular sort of guy and maybe our energies never clicked. He's very methodical and super organized and I'm definitely not. You could almost say I always felt a sort of disconnect or coldness between us so the fact that this special show was in his hands really warmed my heart. Quick story: the first and only compliment I think I ever got from him regarding my music was his comment that the name I came up with for my solo project, Building A Better Robot, was a good name. Three years and that was it. (AJ, if you're reading this and I'm wrong, I apologize!) He had been in contact with my father asking if it was ok that they wanted to do this, where to send the donations, etc. and my father told me while I was still in the hospital. To sweeten the pot I was told the lineup for the show and was stunned to say the least. First, a reunited Minus Scale (though I wasn't going to be playing with them even if I was well and out of the hospital) but also a reunion of one of my favorite local bands, the Human Flight Committee. They had broken up in 2009 and aside from a one-off reunion in 2010 they hadn't played together since. Next there was Too Late The Hero, an amazing band from Maine and brothers-in-arms since my Our Last Summer days. They're very popular around here and I guess they jumped at the chance to help me out. Already three reasons for friends and fans to come out and rock. Originally a band who I'd never met nor heard, Man, The Reformer was supposed to play but had to back out. Replacing them was another band I didn't know, Arms Against A Sea but whom I thanked afterwards for donating their time and energy for my cause. Lastly but certainly not least of all was a dear friend, Cameron Gray. Back in my Our Last Summer days Cameron was the singer for our best friend band, Good Samaritan. He and I have known each other since 2003/2004 and in the years following the dissolution of his band he's made quite a name for himself as a solo artist. This was one of the most killer lineups I'd seen in years and couldn't wait to see it and thank all of these people for helping out. Sadly, my pancreas derailed me and I was forced to miss it. That seems to be a running theme for me this year, missing out on things due to my illness. All told, I've been in the hospital for Christmas, New Years, Valentine's Day, Saint Patrick's Day, the Fourth of July, and very nearly my birthday. I think I was hospitalized for Kelley and my anniversary as well. If I were to sit and count the days I've either spent more time in the hospital than I have at home this year or at least an equal amount of time in both places. That's pretty crazy when you think about it.
Maybe someday I'll be able to repay not just my friends and former colleagues but everyone who has donated to my cause, helped out Kelley or my parents while I was away, family friends, well wishers, everyone. I'd like to think that events like what happened to me bring out the best in people or at least help turn up the empathy meter. People tend to treat you differently when you've stared death in the face and lived to see the other side. Hopefully the goodwill won't end once I get better for real. You've got to admit, it's one hell of a way to reconnect when you start your conversation with "So...I almost died a few times this year and we might not have had a chance to talk again...how's your year been?" Either way, I'm glad I've gotten the chance to rediscover and rekindle old friendships. There's still one guy from my Old Life that I really want to get back in touch with but he's pulling the ol' Artful Dodger on me I think.
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Every day I need to remind myself that I'm blessed and have made it out of a lot of hairy situations this year better than some people in the same position. First there was the pancreatitis and everything surrounding that but now I have the added bonus of a colon reassignment or whatever the doctors call it. During the installation of more JP drains during my last stay at Lahey (starting a little over a months ago) my colon was pierced and waste was spilling into my abdominal cavity. The doctors cleaned my insides out and had to remove a section of my colon so until they reattach everything I only work with a few feet of intestine as opposed to my whole GI tract. What does this mean? My intestine is brought up to my stomach and I've got a colostomy bag on my abdomen to deal with my waste. It's an odd thing to not be able to poop correctly. One of the side effects/bonus? bits to this is my body doesn't process things like fat, cholesterol, calories, etc. like normal people so until they reassign my colon I'm supposed to eat like a fat kid's fantasy. My nurse told me to add peanut butter to everything I can or if the food calls, cheese and bacon. The problem is because of this lack of processing I don't absorb things out of my food like normal people so I need to up my intake quite a bit. Normally I probably eat around 1200-1500 calories a day which is low anyway for a dude my size but now especially they want me eating closer to 4000 calories a day just to maintain weight. I've been dropping pounds like crazy and even though I'm not exactly a tiny guy it's a little disconcerting when I can't at least maintain weight. My diet has literally been cheeseburgers and pizza, peanut butter and shakes. I'm trying to eat healthy but I'm not supposed to eat any real raw fruits or vegetables, whole grains, beans or legumes, nuts, oats...basically things I enjoy eating. I'm trying to embrace this new experience but it's really hard. A good chunk of my year has been spent being NPO and my appetite isn't quite where it should be. I've never been able to stuff myself anyway because if I do, my stomach says "hell no" and things usually come back up. If anyone has any tips or ideas I'd love to hear them.
I think this blog entry got away with me and I'm not really sure what I'm trying to say with it. Maybe the theme is "I get by with a little help from my friends." That's fitting, right? Hopefully I'll get my clarity back soon and get back to writing good, clear and concise entries. Until then, thanks for reading.
Saturday, August 27, 2011
Part Thirteen: I Will Be Home Then
I'm sitting here with a Cat 1 hurricane on course, set to hit the ol' 603 within hours. Kelley's pretty stressed about it but I welcome the storm. We haven't had a decent hurricane in New Hampshire for a few years so I say bring it Bill Gates and your evil weather machines! (It is fairly common knowledge that Mr. Microsoft controls the weather with satellites and such, right?)
I've been home for a few days now from my latest Lahey adventure, closing in on nearly four weeks. What started out as fairly routine and simple ended up being a big ol' bag of awful by the midpoint. I was initially down there to drain a fistula that developed starting from my left flank and going down to my groin. (A fistula is a long, snake-like collection of fluid rather than just a normal globular abscess.) Most people with pancreatitis have pockets of fluid that develop, get drained and that's all she wrote. In my case fluid just keeps coming and coming with no real endpoint in sight. At one point one of my doctors at Wentworth-Douglas said that I have one of the worst cases of the disease he's ever seen. I'm inclined to agree because as time goes on I don't seem to be making much headway. All told I've had nine or ten separate Jackson Pratt drains throughout my abdomen and left flank. Currently I'm only sporting one that is draining an abscess on my right side. It's awkward because the JP bulb is attached to my leg rather than its usual spot on my stomach. Why? Well that's the fun part...
A few days into my stay at Lahey I had a date with Interventional Radiology to put more JP drains in place to deal with the fistula. What they do is put me through a CT scan machine to get an accurate, real-time picture of where the fluid is so they know exactly where to cut me open and place the drain tubes. You may forget (or remember) that your organs are all more or less on top of each other in your body so you want and need to have doctors be as accurate as possible whenever they mess about in there. I trust my doctors, especially those at Lahey implicitly because I have yet to have a bad experience. Cue the chase music...
After I made it back up to my room sporting two brand spankin' new drains my stomach was really upset and I had a pretty hardcore bout of vomiting. Nothing special, right? Well, this time it was pretty special. At times when I vomit the physical process of vomiting makes my other organs and insides do crazy stuff like spit fluid out of my drain sites. This time was particularly interesting because after I got up to void (aka pee) I looked at my bed and it was covered in the nastiest fluid/junk that I've ever seen come out of me. It was pretty viscous, rusty brown color and unappetizing. The dressing around my left flank drain was soaked with this nasty fluid. I called in the nurse who immediately called in the doctors because that kind of thing shouldn't happen nor should the fluid look as it did. Dr. Babek from the transplant team immediately recognized it as fecal matter mixed in with my normal necrotic pancreas fluid. Uh oh, something is not right in Paddy's body. Another CT scan later and what do we find? Paddy's colon has been pierced/cut/sliced open and waste is leeching into my abdominal cavity. Verdict? Not good at all. One thing you never want is waste mingling where it doesn't belong because that can lead to sepsis and becoming very, very ill or even dying. I've been through enough this year that could have killed me so I'm not ready to let that happen. When we realized what happened they shipped me down a few floors back to my old home, SICU.
SICU is a world unto itself at Lahey Clinic. Visiting hours are different, you're hooked up to all sorts of monitors and machines 24/7 and the TV is free. (In the normal rooms they charge you $12.50 per 24 hours of television. I read a lot in hospitals.) I spent weeks there in January after my very messy surgery and as fate would have it they put me in the same room that I stayed in originally, with the same nurses. Needless to say there was a lot of "Hey, you look a lot better than last time" and "What are you doing back here?" Really, SICU isn't much different from the normal hospital save for the things I mentioned above though this time they gave me something new to contend with. Usually for pain meds I would get 1-2 mg of dilaudid every 2-4 hours so I wouldn't be too uncomfortable but this time they decided to switch it up by making my meds PCA or more or less under my control. They added a part to my IV setup where I would control the frequency of my pain meds which worried me at first. Would I use too much? Not enough? They assured me it's a better setup than what I was doing before and it turned out they were right. My setup was for .4 mg every ten minutes (if I chose to take it via a button press.) That dose is enough to ease the pain but not enough to make me feel loopy so I ended up agreeing that it was a better system.
To deal with this new issue I was introduced to the colo-rectal doctor team headed by Dr. Pete Marcello. It turns out he and Dr. Pomposelli are longtime friends and went to the same school, had residency at the same time, etc. He's a very straight shooter and like Dr. Pomposelli doesn't BS or gloss anything over. He laid out what happened (the IR team accidentally pierced my colon either with a needle or the drain itself when they put in my new drains, spilling waste into my abdomen) and our options to deal with it. Our first attempt at fixing the problem involved cleaning out the existing waste and seeing if my colon would heal itself. That didn't work so well. On to option B, colon reassignment surgery. Or was it realignment? I can't remember. Basically what they had to do was go in, cut out a section of my colon, clean out my cavity, and bring my colon up to the skin, meeting up with my new friend: the colostomy bag. I'm told this will be a three to six month process so for the foreseeable future I don't digest or process food normally and instead of things travelling through my colon like a normal person my waste travels into a colostomy bag. It sounds more gross than it actually is but still, for all intents and purposes I have a bag of poop hanging out of my stomach. Oddly enough I can still have bowel movements but 99% of the waste and gas ends up in the bag. Along with this new piece of equipment comes a new diet, low-res/low-fiber. It's like a fat kid's dream diet because I'm not really allowed to eat anything good like whole grains, most fresh raw vegetables and fruit, oats, nuts, beans/legumes, (all of the things that I love to eat) and instead they want me to eat garbage with little to no nutritional value. Dr. Marcello also told me that due to this current colon setup I don't process fats, cholesterol, calories, etc. like normal but in a "good" way. He wants me eating like a fat kid and even told me to eat a cheeseburger when I got out of the hospital. Again, fat kids' dream diet but not my cup of tea. I'd rather have delicious whole foods not processed garbage. Fortunately it's only for a few months.
Speaking of fat kid stuff I'm now 166.5 pounds. Craziness. That's the lightest I've been since I was 13 or so. That puts my weight loss from the start of this adventure to now at about 75 pounds, give or take a few pounds. I'm happy for the svelte physique but it was an extreme way to get it. When I start working out again I'm hoping I can get down to a trim 155 or so while 175 is my new "fattest you'll be" plateau. Shouldn't be too difficult though because my appetite is a fraction of what it once was, I no longer get the thousands of empty calories I used to get from alcohol and I eat pretty sensibly, even with the new diet. Add that to a decent workout regimen and I should be ok.
There is a lot more to write about regarding this and all of my hospital stays but I'll leave that for future posts. I'm getting things ready for the hurricane and taking some much-needed rest. Lateron.
I've been home for a few days now from my latest Lahey adventure, closing in on nearly four weeks. What started out as fairly routine and simple ended up being a big ol' bag of awful by the midpoint. I was initially down there to drain a fistula that developed starting from my left flank and going down to my groin. (A fistula is a long, snake-like collection of fluid rather than just a normal globular abscess.) Most people with pancreatitis have pockets of fluid that develop, get drained and that's all she wrote. In my case fluid just keeps coming and coming with no real endpoint in sight. At one point one of my doctors at Wentworth-Douglas said that I have one of the worst cases of the disease he's ever seen. I'm inclined to agree because as time goes on I don't seem to be making much headway. All told I've had nine or ten separate Jackson Pratt drains throughout my abdomen and left flank. Currently I'm only sporting one that is draining an abscess on my right side. It's awkward because the JP bulb is attached to my leg rather than its usual spot on my stomach. Why? Well that's the fun part...
A few days into my stay at Lahey I had a date with Interventional Radiology to put more JP drains in place to deal with the fistula. What they do is put me through a CT scan machine to get an accurate, real-time picture of where the fluid is so they know exactly where to cut me open and place the drain tubes. You may forget (or remember) that your organs are all more or less on top of each other in your body so you want and need to have doctors be as accurate as possible whenever they mess about in there. I trust my doctors, especially those at Lahey implicitly because I have yet to have a bad experience. Cue the chase music...
After I made it back up to my room sporting two brand spankin' new drains my stomach was really upset and I had a pretty hardcore bout of vomiting. Nothing special, right? Well, this time it was pretty special. At times when I vomit the physical process of vomiting makes my other organs and insides do crazy stuff like spit fluid out of my drain sites. This time was particularly interesting because after I got up to void (aka pee) I looked at my bed and it was covered in the nastiest fluid/junk that I've ever seen come out of me. It was pretty viscous, rusty brown color and unappetizing. The dressing around my left flank drain was soaked with this nasty fluid. I called in the nurse who immediately called in the doctors because that kind of thing shouldn't happen nor should the fluid look as it did. Dr. Babek from the transplant team immediately recognized it as fecal matter mixed in with my normal necrotic pancreas fluid. Uh oh, something is not right in Paddy's body. Another CT scan later and what do we find? Paddy's colon has been pierced/cut/sliced open and waste is leeching into my abdominal cavity. Verdict? Not good at all. One thing you never want is waste mingling where it doesn't belong because that can lead to sepsis and becoming very, very ill or even dying. I've been through enough this year that could have killed me so I'm not ready to let that happen. When we realized what happened they shipped me down a few floors back to my old home, SICU.
SICU is a world unto itself at Lahey Clinic. Visiting hours are different, you're hooked up to all sorts of monitors and machines 24/7 and the TV is free. (In the normal rooms they charge you $12.50 per 24 hours of television. I read a lot in hospitals.) I spent weeks there in January after my very messy surgery and as fate would have it they put me in the same room that I stayed in originally, with the same nurses. Needless to say there was a lot of "Hey, you look a lot better than last time" and "What are you doing back here?" Really, SICU isn't much different from the normal hospital save for the things I mentioned above though this time they gave me something new to contend with. Usually for pain meds I would get 1-2 mg of dilaudid every 2-4 hours so I wouldn't be too uncomfortable but this time they decided to switch it up by making my meds PCA or more or less under my control. They added a part to my IV setup where I would control the frequency of my pain meds which worried me at first. Would I use too much? Not enough? They assured me it's a better setup than what I was doing before and it turned out they were right. My setup was for .4 mg every ten minutes (if I chose to take it via a button press.) That dose is enough to ease the pain but not enough to make me feel loopy so I ended up agreeing that it was a better system.
To deal with this new issue I was introduced to the colo-rectal doctor team headed by Dr. Pete Marcello. It turns out he and Dr. Pomposelli are longtime friends and went to the same school, had residency at the same time, etc. He's a very straight shooter and like Dr. Pomposelli doesn't BS or gloss anything over. He laid out what happened (the IR team accidentally pierced my colon either with a needle or the drain itself when they put in my new drains, spilling waste into my abdomen) and our options to deal with it. Our first attempt at fixing the problem involved cleaning out the existing waste and seeing if my colon would heal itself. That didn't work so well. On to option B, colon reassignment surgery. Or was it realignment? I can't remember. Basically what they had to do was go in, cut out a section of my colon, clean out my cavity, and bring my colon up to the skin, meeting up with my new friend: the colostomy bag. I'm told this will be a three to six month process so for the foreseeable future I don't digest or process food normally and instead of things travelling through my colon like a normal person my waste travels into a colostomy bag. It sounds more gross than it actually is but still, for all intents and purposes I have a bag of poop hanging out of my stomach. Oddly enough I can still have bowel movements but 99% of the waste and gas ends up in the bag. Along with this new piece of equipment comes a new diet, low-res/low-fiber. It's like a fat kid's dream diet because I'm not really allowed to eat anything good like whole grains, most fresh raw vegetables and fruit, oats, nuts, beans/legumes, (all of the things that I love to eat) and instead they want me to eat garbage with little to no nutritional value. Dr. Marcello also told me that due to this current colon setup I don't process fats, cholesterol, calories, etc. like normal but in a "good" way. He wants me eating like a fat kid and even told me to eat a cheeseburger when I got out of the hospital. Again, fat kids' dream diet but not my cup of tea. I'd rather have delicious whole foods not processed garbage. Fortunately it's only for a few months.
Speaking of fat kid stuff I'm now 166.5 pounds. Craziness. That's the lightest I've been since I was 13 or so. That puts my weight loss from the start of this adventure to now at about 75 pounds, give or take a few pounds. I'm happy for the svelte physique but it was an extreme way to get it. When I start working out again I'm hoping I can get down to a trim 155 or so while 175 is my new "fattest you'll be" plateau. Shouldn't be too difficult though because my appetite is a fraction of what it once was, I no longer get the thousands of empty calories I used to get from alcohol and I eat pretty sensibly, even with the new diet. Add that to a decent workout regimen and I should be ok.
There is a lot more to write about regarding this and all of my hospital stays but I'll leave that for future posts. I'm getting things ready for the hurricane and taking some much-needed rest. Lateron.
Saturday, August 13, 2011
Quick pic update!
Here are some glamour shots of my new abdominal incision. Almost identical to the first one which is probably why the pain is so exhausting and extensive.
Plus who doesn't dig staples in their stomachs?
Real posts when I get home, kiddos. Loads of stories about my latest Lahey adventure.
Sunday, July 24, 2011
Part Twelve: With Friends Like These...
As I get older I tend to reflect on things a bit more every year. This year being the great big cluster-eff it's been is cause for much of that, hence this blog in the first place, and especially since my birthday is tomorrow I'm taking stock of things a bit more. I will be 28 tomorrow. Damn. I kind of still feel like I'm in that weird post-18 pre-25 mindset. Maybe it's because Kelley is four years my junior and that keeps me feeling younger but when I was a younger lad (late teens, early 20's) I thought "Damn, 28? Almost 30? That's old." Now look at me. There's been a lot of life lived here my friends, a lot of things that maybe would have been better not happening but hey, I've always subscribed to the notion that if you're happy with where you are right now then nothing was really bad because it all forms and informs who you are. Very much a cliché, I know.
Let's see, potentially life-threatening disease? Check. Surviving it. What else you got, universe?
The systematic dismantling of my friend network over the years either deliberately or otherwise? Double check. This is a big one that really bothers me and that will probably never change. Five years ago I had a great many folks I could count on and look to and my extended family was very extended indeed. It kind of started when I got out of the music game, I think. I just checked out from everyone and landed at the bottom of a bottle for awhile. There are only so many unreturned phone calls and messages that people can take before checking you off the list I suppose. Another point for my causing my own distress. Slowly I've begun to rebuild some of those relationships and it's occurred to me that if I reconnect with people, awesome. The ones that stay on the other side of that burned bridge will just have to hang out there for awhile longer, as much as I'd like to change that. I'm a dude that doesn't like to make waves with people, contrary to what my actions in a past life may have said.
Sometimes, even when I try I get burned. Example: when I went to jail I met this dude named Kurt and we became fast friends. Both musicians, both cooks, similar sense of humor, and enrolled in the same "don't drink and drive" anymore program. When we got back to the real world we met again unexpectedly on the streets of Dover and I soon went to work for him (he was chef at a local restaurant.) Now, I was a fairly prodigious alcoholic but THIS guy had an epic drinking problem. He'd make daily trips to the liquor store, passing my apartment on the way, to get "breakfast" at 9 or 10am and would basically be wasted all day. I'd have to wake him up to get to work some days (he lived adjacent to the restaurant) and cover for him when he took pulls off the bottles of cooking wine and such in the kitchen. Not a fun set of circumstances. Anyway, finally it got to be pretty bad and I took him to the hospital with a friend of his. This friend bailed on us and I was with him all day in the ER getting sobered up and stabilized. The dude drank two nips of vodka in the triage bathroom, that's how bad off he was. Eventually one of the nurses/social work people came in and he agreed to check into a rehab facility that day. He's been in now for about a year and I'm happy to say he's been sober since December 3rd and getting things back on track. Kelley and I ran into him at Barnes and Noble not too long ago and we chatted. He said "Oh shit, you got skinny! Working out or hospital?" We can smell our own. I told him about my pancreatitis and he just said "Yup, that'll do it."
I've been asked if I feel slighted or something because here's a guy who drank much, much more than me in a shorter amount of time and is healthier than I am. Nope. I drew the short straw and it's my lot to bear. I'm happy that my friend got himself clean and didn't have to have something terrible happen to him to get that way. I'm not one to question the "fairness" of the things that happen to us. Things just happen and we either go with it or we don't and I'm happy to say I'm not done fighting just yet. Too much to live for.
Yesterday into last night and moving to today has been kind of a trial. Not sure why but my flank drain has been giving me A LOT of pain. It took me hours to fall asleep last night because any way I laid hurt. A lot. I'm used to not sleeping at this point but not sleeping due to unyielding pain isn't something I deal with every day, at least not as often as I used to. The worst part of this pain business is that it tends to keep me inside and not out actually doing things. For awhile I couldn't really go out because I was going to the hospital so often. It really was a daily battle to see if I would have to hit the ER or not so you can imagine what that does to one's social life. Hopefully I won't have any more problems today or tomorrow. Who wants to be laid up on their birthday? I'm not even planning on doing anything but it would be nice to be able to do something if I so chose. Yup.
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Might take the day off from writing tomorrow due to the specified above birthday. Or I'll finally get around to writing about my surgery. We'll see.
Let's see, potentially life-threatening disease? Check. Surviving it. What else you got, universe?
The systematic dismantling of my friend network over the years either deliberately or otherwise? Double check. This is a big one that really bothers me and that will probably never change. Five years ago I had a great many folks I could count on and look to and my extended family was very extended indeed. It kind of started when I got out of the music game, I think. I just checked out from everyone and landed at the bottom of a bottle for awhile. There are only so many unreturned phone calls and messages that people can take before checking you off the list I suppose. Another point for my causing my own distress. Slowly I've begun to rebuild some of those relationships and it's occurred to me that if I reconnect with people, awesome. The ones that stay on the other side of that burned bridge will just have to hang out there for awhile longer, as much as I'd like to change that. I'm a dude that doesn't like to make waves with people, contrary to what my actions in a past life may have said.
Sometimes, even when I try I get burned. Example: when I went to jail I met this dude named Kurt and we became fast friends. Both musicians, both cooks, similar sense of humor, and enrolled in the same "don't drink and drive" anymore program. When we got back to the real world we met again unexpectedly on the streets of Dover and I soon went to work for him (he was chef at a local restaurant.) Now, I was a fairly prodigious alcoholic but THIS guy had an epic drinking problem. He'd make daily trips to the liquor store, passing my apartment on the way, to get "breakfast" at 9 or 10am and would basically be wasted all day. I'd have to wake him up to get to work some days (he lived adjacent to the restaurant) and cover for him when he took pulls off the bottles of cooking wine and such in the kitchen. Not a fun set of circumstances. Anyway, finally it got to be pretty bad and I took him to the hospital with a friend of his. This friend bailed on us and I was with him all day in the ER getting sobered up and stabilized. The dude drank two nips of vodka in the triage bathroom, that's how bad off he was. Eventually one of the nurses/social work people came in and he agreed to check into a rehab facility that day. He's been in now for about a year and I'm happy to say he's been sober since December 3rd and getting things back on track. Kelley and I ran into him at Barnes and Noble not too long ago and we chatted. He said "Oh shit, you got skinny! Working out or hospital?" We can smell our own. I told him about my pancreatitis and he just said "Yup, that'll do it."
I've been asked if I feel slighted or something because here's a guy who drank much, much more than me in a shorter amount of time and is healthier than I am. Nope. I drew the short straw and it's my lot to bear. I'm happy that my friend got himself clean and didn't have to have something terrible happen to him to get that way. I'm not one to question the "fairness" of the things that happen to us. Things just happen and we either go with it or we don't and I'm happy to say I'm not done fighting just yet. Too much to live for.
Yesterday into last night and moving to today has been kind of a trial. Not sure why but my flank drain has been giving me A LOT of pain. It took me hours to fall asleep last night because any way I laid hurt. A lot. I'm used to not sleeping at this point but not sleeping due to unyielding pain isn't something I deal with every day, at least not as often as I used to. The worst part of this pain business is that it tends to keep me inside and not out actually doing things. For awhile I couldn't really go out because I was going to the hospital so often. It really was a daily battle to see if I would have to hit the ER or not so you can imagine what that does to one's social life. Hopefully I won't have any more problems today or tomorrow. Who wants to be laid up on their birthday? I'm not even planning on doing anything but it would be nice to be able to do something if I so chose. Yup.
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Might take the day off from writing tomorrow due to the specified above birthday. Or I'll finally get around to writing about my surgery. We'll see.
Saturday, July 23, 2011
Part Eleven: Blessed Burden
According to various news sources Amy Winehouse was found dead in London today. A twenty-seven year old life cut short. The police say the death is currently unexplained but given her history of addictions I don't think anyone really questions what killed her. Tragic? Yes. Unexpected? Hardly. This is the gamble you play when you have self-destructive tendencies. No one forced that woman to make the choices she did regarding her addictions and call me unsympathetic but there are more tragic losses of life to mourn and empathize with the survivors. One of my friends exemplified this in a Facebook posting today regarding the overwhelming outpouring of posts about Amy Winehouse and a severe lack of posting about the atrocities committed in Oslo, Norway yesterday. He said that it was appalling and unsettling that so many ostensibly care about the death of a young lady who (pending cause of death reports) more than likely knowingly brought this on herself and are either ignorant of or uncaring about 92+ dead innocents, many of them children, in Norway at the hands of a terrorist. (Remember kids, terrorists aren't just from a sandy part of the world.) I'm not one to pass judgement on people's priorities or level of empathy about world events but I kind of agree with him. What does this have to do with pancreatitis? Absolutely nothing. It was just the first thing I thought about when I say down at the keyboard this evening.
Know what else I'm thinking about? Purple Gatorade. It's refreshing and tasty. Also, tattoos.
I'm getting a tattoo of a pancreas at some point, hopefully sooner than later. I've never been more sure of a tattoo in my life. Since I first got tattooed (never, EVER refer to it as being "inked." I will smack you.) when I was 19 to my last tattoo this past fall I've felt strongly about everything on my body but this one takes the cake. Or the real estate on my skin required to make it happen. Immediately following my surgery, or at least when I regained consciousness and could string thoughts together coherently I thought it would be the best idea ever to get a pancreas tattoo. Not over the area where my pancreas is/was mind you, but a tattoo of a pancreas. I understand it may not be the easiest thing to picture because really, the pancreas kind of looks like a log of poo. Fleshy poo.
Kelley was the first one to say "Uh...I can't picture that looking good. It's pretty gross." But I could not be swayed. What better way to commemorate my trials by getting a symbol to remind me of what I went through and what I now deal with on a daily basis? Granted, I'm not just going to get a pancreas, it will be a bit more artfully done than that, but it will be an unmistakable testament to the organ that turned on me. I've already discussed the project with my friend and tattooist extraordinaire, Christina Sardinha-Wulfe. She's a doll. She's done most of my tattoos, currently doing a great piece on Kelley and my number one choice for body art. At this point in our relationship I would trust her implicitly to tattoo anything on me without telling me what it was first. This almost happened, actually, when we started on the project of my leg tattoo. I've got six monarch butterflies on my right leg and get comments about them constantly. Pretty manly, eh? A dude with a bunch of butterflies. How did this come to pass? Whilst hanging out at her then place of business years ago she told me that she had a dream about doing a sleeve of monarch butterflies on someone and upon waking up thought of me. Not sure if that part is true or not but when she told me this I said "Ok, I'm game" or something along those lines. Later we started work on the piece sight unseen and it's probably my favorite tattoo thus far and we're still not done with it. (On the subject of manly tattoos, I am the MANLIEST. Plenty of dudes have butterflies, hearts on their sleeve, and a little boy and little girl holding hands in a field with fireflies. Maybe I need a sweet tribal armband to right my tattoo badassery wheel. Or not.)
Getting back on track, our idea for a pancreas tattoo is getting pretty cool. She thought of doing the organ itself half dead/half vibrant for the dichotomy of what's going on inside my body and to go with my ideas of rebirth and vitality and such she gave the idea of adding Japanese maple leaves and cherry blossoms. The cherry blossoms are a symbol of impermanence and taking the most out of the moments while the Japanese maple is symbolic of going with the flow and bending rather than breaking against stress. The placement we're working with is pretty fortuitous because I have adjoining tattoos in the area already, one a pair of koi fish (a symbol of courage in Buddhism) and script that reads "We are blessed, we endure." My sleeve as a whole will be a testament to going forward. I'm stoked.
Not that I need a tattoo to commemorate the experience or remind myself of it, I'm reminded of it every day and not just with pain or discomfort. I've got scars on my abdomen and other places that will forever remind me of what I went through. I can't wait to scare kids who see me shirtless by saying my scar is from where the alien poppped out or something along those lines. I hope my scars never fade or go away. They're an important reminder and testament to the biggest change in my life and not just from a medical standpoint. Pancreatitis has made me a better person in the long run and saved me from myself. Huh. The thing that nearly killed me saved my life. Speaking of my little friend illness, he's been acting up a bit today. First with a bit of nausea and sufficient drain issues. I'm getting really tired of being in pain, let me tell you.
I know I've been a little lax with the storytelling portion of the blog these past few days but rest assured more entertaining anecdotes about hospital life are coming up soon. Chronologically I'm now onto the surgery itself and what happened afterwards which is pretty heady stuff and kind of important so I'm saving it for a rainy day. Maybe it will start pouring soon.
Know what else I'm thinking about? Purple Gatorade. It's refreshing and tasty. Also, tattoos.
I'm getting a tattoo of a pancreas at some point, hopefully sooner than later. I've never been more sure of a tattoo in my life. Since I first got tattooed (never, EVER refer to it as being "inked." I will smack you.) when I was 19 to my last tattoo this past fall I've felt strongly about everything on my body but this one takes the cake. Or the real estate on my skin required to make it happen. Immediately following my surgery, or at least when I regained consciousness and could string thoughts together coherently I thought it would be the best idea ever to get a pancreas tattoo. Not over the area where my pancreas is/was mind you, but a tattoo of a pancreas. I understand it may not be the easiest thing to picture because really, the pancreas kind of looks like a log of poo. Fleshy poo.
Kelley was the first one to say "Uh...I can't picture that looking good. It's pretty gross." But I could not be swayed. What better way to commemorate my trials by getting a symbol to remind me of what I went through and what I now deal with on a daily basis? Granted, I'm not just going to get a pancreas, it will be a bit more artfully done than that, but it will be an unmistakable testament to the organ that turned on me. I've already discussed the project with my friend and tattooist extraordinaire, Christina Sardinha-Wulfe. She's a doll. She's done most of my tattoos, currently doing a great piece on Kelley and my number one choice for body art. At this point in our relationship I would trust her implicitly to tattoo anything on me without telling me what it was first. This almost happened, actually, when we started on the project of my leg tattoo. I've got six monarch butterflies on my right leg and get comments about them constantly. Pretty manly, eh? A dude with a bunch of butterflies. How did this come to pass? Whilst hanging out at her then place of business years ago she told me that she had a dream about doing a sleeve of monarch butterflies on someone and upon waking up thought of me. Not sure if that part is true or not but when she told me this I said "Ok, I'm game" or something along those lines. Later we started work on the piece sight unseen and it's probably my favorite tattoo thus far and we're still not done with it. (On the subject of manly tattoos, I am the MANLIEST. Plenty of dudes have butterflies, hearts on their sleeve, and a little boy and little girl holding hands in a field with fireflies. Maybe I need a sweet tribal armband to right my tattoo badassery wheel. Or not.)
Getting back on track, our idea for a pancreas tattoo is getting pretty cool. She thought of doing the organ itself half dead/half vibrant for the dichotomy of what's going on inside my body and to go with my ideas of rebirth and vitality and such she gave the idea of adding Japanese maple leaves and cherry blossoms. The cherry blossoms are a symbol of impermanence and taking the most out of the moments while the Japanese maple is symbolic of going with the flow and bending rather than breaking against stress. The placement we're working with is pretty fortuitous because I have adjoining tattoos in the area already, one a pair of koi fish (a symbol of courage in Buddhism) and script that reads "We are blessed, we endure." My sleeve as a whole will be a testament to going forward. I'm stoked.
Not that I need a tattoo to commemorate the experience or remind myself of it, I'm reminded of it every day and not just with pain or discomfort. I've got scars on my abdomen and other places that will forever remind me of what I went through. I can't wait to scare kids who see me shirtless by saying my scar is from where the alien poppped out or something along those lines. I hope my scars never fade or go away. They're an important reminder and testament to the biggest change in my life and not just from a medical standpoint. Pancreatitis has made me a better person in the long run and saved me from myself. Huh. The thing that nearly killed me saved my life. Speaking of my little friend illness, he's been acting up a bit today. First with a bit of nausea and sufficient drain issues. I'm getting really tired of being in pain, let me tell you.
I know I've been a little lax with the storytelling portion of the blog these past few days but rest assured more entertaining anecdotes about hospital life are coming up soon. Chronologically I'm now onto the surgery itself and what happened afterwards which is pretty heady stuff and kind of important so I'm saving it for a rainy day. Maybe it will start pouring soon.
Friday, July 22, 2011
Part Ten: The Red White and Blues
To quote Mr. Ice Cube at his most ghetto superstar, today was a good day. I didn't even have to use my AK. False. I do not own an AK nor any other firearms though I think if there were a day where I were to use such a thing it would be more on the thrilling side, or at least noteworthy. To tell the truth, I'm fairly tired right now but I'm not sure if it's due to the very short sleep I had last night or the heat and humidity. Sure, it's gross here but I'd say I'm weathering it better than most people (pun fully intended.) Why complain if you can't do anything about it? Like most things in life someone else has things much worse off than you do so suck it up and soldier on.
Ok, sorry, ran a bit off track there. That and I'm full immersing myself in my latest audio acquisition, the fantastic EP Lost Ground from my favorite friend-driven hardcore band Defeater. If you care anything about majestically heavy and heartfelt music please buy their records or shirts or catch a show. Not only are they bloody brilliant but my old buddy Derek handles vocal duties and what can I say, the boy makes me proud. I'm glad one of us made it out alive.
Back to the story: despite the stifling heat, today went pretty well. Had a delicious scone for breakfast, watched some Dexter with Kelley, ventured out to have lunch with her parents in honor of my upcoming birthday, saw the new Harry Potter movie and picked up some very cheap t-shirts. This boy needs more clothes that fit now that I'm a bit smaller than I was six months ago. My pain level, on a scale of 1 to 10 was a solid 5 today. At times there were spikes but it was just your general consistent pain today. These drains are not very fun to live with, let me tell you. The fluid has a nice stank, my skin gets raw and torn up from having to constantly apply and remove tegaderm patches or tape, and they hurt, pinch, sting, whathaveyou. Especially the one in my back. Oy vey. This guy keeps me from sleeping properly and is a consistent pain in the back (literally! Ha!) Add to that the bonus points of kind of pulling out on its own so my JP doesn't drain properly and the fluid inside me is going nowhere. Great. Can't wait to visit the hospital again for that one. As used to being hospitalized as I am it doesn't make it any more fun. It's always the same: go to Wentworth-Douglas ER for intense pain, nausea, vomiting, infections, get treated and stabilized, get CT scanned and/or X-rayed, find out there's funny stuff going on inside, take an ambulance down to Lahey clinic to get stabilized some more and have Dr. Pomposelli ask why they transferred me or have new drains put in. As I've mentioned in an earlier entry I'm not terribly thrilled about CT scans (I'm going to have another scheduled for next week or so. Number 22 baby!) but that's what Jimmy wants me to do.
The pain is much more bearable these days than it has been and I'll tell you, I don't know how people get addicted to pain killers. Or rather, I know I would never get addicted to pain killers. At least PO/by mouth pain meds. IV meds, sure. There is definitely a certain loopy/rush/oooh feeling when you get IV pain meds, especially when they're something strong like dilaudid. In fact, one of the nurses this last time at Lahey told me about this whole series of YouTube videos about patients going to ERs or treatment facilities and requesting very specific doses of dilaudid and/or phenergan. For those who don't know, dilaudid is basically high test morphine and phenergan is a very potent nausea medication that has the added bonus of causing severe drowsiness. I have a script for it right now, actually. When you combine these two meds you have a very hearty cocktail that I'm often prescribed when I hit the ER when things get really bad. Sometimes they throw in a little ativan too. THAT will put me out. One time they gave me three rounds of that in the ER and sent me on my way. Let me tell you, I was fucked up. No other way to put it. Stumbled out of triage and everything. Mind you, I don't enjoy that feeling and try to avoid it as much as my pain will allow me to. Being in control of your faculties is a big plus in my book.
Back to my earlier point, I have the fortune of not really being affected by pain meds at home. I've had scripts for dilaudid, oxycodine, oxycodone, percocet, darvocet, etc. and not one has made me feel loopy or high. Thank GOD. That's all a recovering alcoholic needs, more ways to get messed up in the comfort of home. Maybe I just got lucky in the genetic lottery and I don't get hit by that stuff like other people do. I know folks that would step over their own mother for some oxycontin and I'm very happy I am not one of those people. Most of the time I try to deal with pain either naturally or with Tylenol or some other OTC pain reliever. Try to stay away from acetaminophen though, that stuff does a number on your liver.
Being as treated as I've been can be a big help sometimes, especially when I'm working with people who haven't seen me before or read my chart. Let me tell you, my chart is pretty hefty. I think the docs and nurses appreciate it that I'm pretty knowledgeable about what's going on in my body. It makes their job easier when a patient is an active participant in their treatment. It's true. If you're in the hospital or anything like that ask questions and listen. You'll be surprised how much help you can be because I'm sorry to burst some bubbles but most doctors aren't geniuses and they sometimes only work in best guess scenarios. Even basic simple stuff helps like knowing the all-too-common question "What would you rate your pain today on a scale of 0 to 10, 0 being no pain and 10 being the worst pain you've ever felt?" Louis C.K. has a bit about this saying why would anyone say anything but 10? Doc, I'm in pain. Give me meds. There is some truth in that but being able to pinpoint more accurately is better in the long run. Example, today I'm rocking about a 5. It's in the middle of the road in terms of my experiences with pain. Sometimes I'll tell them I'm at an 11 because I love Spinal Tap and those are times where it hurts so badly that I really think I could die. It happens less often now but for awhile that was the standard. I'd have to get 1-2 milligram doses of dilaudid every two hours just to stay functioning. Not cool, brah. There was one time at Wentworth-Douglas that was extraordinarily bad and I had pain meds every hour, PO percocet then IV dilaudid an hour later in two hour cycles. One. Two. One. Two. One. Two. Man, I don't want to relive that experience.
It's getting close to time for me to check out for the night so I think I'll do that. Kelley has the New Hampshire Tattoo Convention tomorrow with her friend Cammy and because I opted out of going I've got a whole lot of nothing to do tomorrow. Maybe laundry? Who knows. Hopefully my drains don't act up any more tomorrow. It's bad enough they're leaking and causing me much distress, I don't need any more lip from them. Thanks for your time, dear readers. Tomorrow!
Ok, sorry, ran a bit off track there. That and I'm full immersing myself in my latest audio acquisition, the fantastic EP Lost Ground from my favorite friend-driven hardcore band Defeater. If you care anything about majestically heavy and heartfelt music please buy their records or shirts or catch a show. Not only are they bloody brilliant but my old buddy Derek handles vocal duties and what can I say, the boy makes me proud. I'm glad one of us made it out alive.
Back to the story: despite the stifling heat, today went pretty well. Had a delicious scone for breakfast, watched some Dexter with Kelley, ventured out to have lunch with her parents in honor of my upcoming birthday, saw the new Harry Potter movie and picked up some very cheap t-shirts. This boy needs more clothes that fit now that I'm a bit smaller than I was six months ago. My pain level, on a scale of 1 to 10 was a solid 5 today. At times there were spikes but it was just your general consistent pain today. These drains are not very fun to live with, let me tell you. The fluid has a nice stank, my skin gets raw and torn up from having to constantly apply and remove tegaderm patches or tape, and they hurt, pinch, sting, whathaveyou. Especially the one in my back. Oy vey. This guy keeps me from sleeping properly and is a consistent pain in the back (literally! Ha!) Add to that the bonus points of kind of pulling out on its own so my JP doesn't drain properly and the fluid inside me is going nowhere. Great. Can't wait to visit the hospital again for that one. As used to being hospitalized as I am it doesn't make it any more fun. It's always the same: go to Wentworth-Douglas ER for intense pain, nausea, vomiting, infections, get treated and stabilized, get CT scanned and/or X-rayed, find out there's funny stuff going on inside, take an ambulance down to Lahey clinic to get stabilized some more and have Dr. Pomposelli ask why they transferred me or have new drains put in. As I've mentioned in an earlier entry I'm not terribly thrilled about CT scans (I'm going to have another scheduled for next week or so. Number 22 baby!) but that's what Jimmy wants me to do.
The pain is much more bearable these days than it has been and I'll tell you, I don't know how people get addicted to pain killers. Or rather, I know I would never get addicted to pain killers. At least PO/by mouth pain meds. IV meds, sure. There is definitely a certain loopy/rush/oooh feeling when you get IV pain meds, especially when they're something strong like dilaudid. In fact, one of the nurses this last time at Lahey told me about this whole series of YouTube videos about patients going to ERs or treatment facilities and requesting very specific doses of dilaudid and/or phenergan. For those who don't know, dilaudid is basically high test morphine and phenergan is a very potent nausea medication that has the added bonus of causing severe drowsiness. I have a script for it right now, actually. When you combine these two meds you have a very hearty cocktail that I'm often prescribed when I hit the ER when things get really bad. Sometimes they throw in a little ativan too. THAT will put me out. One time they gave me three rounds of that in the ER and sent me on my way. Let me tell you, I was fucked up. No other way to put it. Stumbled out of triage and everything. Mind you, I don't enjoy that feeling and try to avoid it as much as my pain will allow me to. Being in control of your faculties is a big plus in my book.
Back to my earlier point, I have the fortune of not really being affected by pain meds at home. I've had scripts for dilaudid, oxycodine, oxycodone, percocet, darvocet, etc. and not one has made me feel loopy or high. Thank GOD. That's all a recovering alcoholic needs, more ways to get messed up in the comfort of home. Maybe I just got lucky in the genetic lottery and I don't get hit by that stuff like other people do. I know folks that would step over their own mother for some oxycontin and I'm very happy I am not one of those people. Most of the time I try to deal with pain either naturally or with Tylenol or some other OTC pain reliever. Try to stay away from acetaminophen though, that stuff does a number on your liver.
Being as treated as I've been can be a big help sometimes, especially when I'm working with people who haven't seen me before or read my chart. Let me tell you, my chart is pretty hefty. I think the docs and nurses appreciate it that I'm pretty knowledgeable about what's going on in my body. It makes their job easier when a patient is an active participant in their treatment. It's true. If you're in the hospital or anything like that ask questions and listen. You'll be surprised how much help you can be because I'm sorry to burst some bubbles but most doctors aren't geniuses and they sometimes only work in best guess scenarios. Even basic simple stuff helps like knowing the all-too-common question "What would you rate your pain today on a scale of 0 to 10, 0 being no pain and 10 being the worst pain you've ever felt?" Louis C.K. has a bit about this saying why would anyone say anything but 10? Doc, I'm in pain. Give me meds. There is some truth in that but being able to pinpoint more accurately is better in the long run. Example, today I'm rocking about a 5. It's in the middle of the road in terms of my experiences with pain. Sometimes I'll tell them I'm at an 11 because I love Spinal Tap and those are times where it hurts so badly that I really think I could die. It happens less often now but for awhile that was the standard. I'd have to get 1-2 milligram doses of dilaudid every two hours just to stay functioning. Not cool, brah. There was one time at Wentworth-Douglas that was extraordinarily bad and I had pain meds every hour, PO percocet then IV dilaudid an hour later in two hour cycles. One. Two. One. Two. One. Two. Man, I don't want to relive that experience.
It's getting close to time for me to check out for the night so I think I'll do that. Kelley has the New Hampshire Tattoo Convention tomorrow with her friend Cammy and because I opted out of going I've got a whole lot of nothing to do tomorrow. Maybe laundry? Who knows. Hopefully my drains don't act up any more tomorrow. It's bad enough they're leaking and causing me much distress, I don't need any more lip from them. Thanks for your time, dear readers. Tomorrow!
 |
| Attempting to be clever with my plushy pancreas. Get it?! |
Thursday, July 21, 2011
Part Nine: Thnks Fr Th Mmrs
First off, thank you to everyone who has read and will read this little blog in the future. This isn't therapy for me and it isn't meant to make sense of what's happening in my life. I don't need to write any of this down for closure or sanity, I do it because enough people have asked about what went on when I got sick that I'm dealing with the tedium of telling the same story over and over in one fell swoop. Enough of my life this year has been interesting and or entertaining enough that maybe, just maybe it'll be a good diversion for people other than me and my family; those whom witnessed all of the awful things that went on especially during the times I can't remember. Y'know what, maybe I'm writing this for them. Yes. I'll go with that. This blog is for my family. And not just those people I share genetic ties to but those whom I love and gave me a reason to pull through and not let my disease get the best of me. My parents spent a lot of gas and money (Lahey takes in a considerable amount in parking fees you know) making the trek to Burlington day after day and it makes me feel bad. Seeing me laid out fighting to stay alive at times was not a pleasant experience for Kelley and I know it messed her up a bit to see me like that. Hell, after I posted that series of pictures the other day she came downstairs after I had taken a shower, wrapped her arms around me and balled her eyes out because she can't handle thinking about those days. I've only let myself really get upset about my situation once since I left the hospital. One of the two of us has to soldier on through all of this and if I let things get to me I won't be able to function. Her lovely parents and sister got to see me when I was pretty bad off and I'm pretty sure they've taken a shine to me so that couldn't have been fun for them to watch. My brother Seamus came to visit me but I don't remember. Sorry dude. My brothers, my gang came to see me. Twice. This is after being disconnected from them for a good long while. Still, bonds run deep and how many people can say they've had the same friends for their whole lives? Then there was Angel, who made Christmas that much more merry. That dude would do anything I'd ask of him and that's not lost on me. These people saw me at my worst and I apologize to all of them for putting them through uncomfortable situations.
Also, thanks to everyone who sent cards and well-wishes. It means a lot to have people in your corner. Extra special thanks to everyone who has helped out financially, I wouldn't be able to live without help and it's much appreciated. Family, friends, well-wishers and strangers have donated to keep me afloat and it means the world to me and to Kelley. I'm eternally grateful and indebted to all of you.
Alright, enough of this love-in. Let's get to some meat and potatoes storytelling, eh?!
C'mon, I thought it was funny.
I'm feeling a bit scatterbrained tonight so I'll leave the history and stories for the next post. I'll just leave this as a thankful post and take it easy for now. So again, thank you. Readers, well-wishers, family, friends, long-losts and never-lefts. There's more to come and hopefully people will be entertained, moved, and maybe even inspired by what goes on here. I promise some juicy bits coming up.
Also, thanks to everyone who sent cards and well-wishes. It means a lot to have people in your corner. Extra special thanks to everyone who has helped out financially, I wouldn't be able to live without help and it's much appreciated. Family, friends, well-wishers and strangers have donated to keep me afloat and it means the world to me and to Kelley. I'm eternally grateful and indebted to all of you.
Alright, enough of this love-in. Let's get to some meat and potatoes storytelling, eh?!
C'mon, I thought it was funny.
I'm feeling a bit scatterbrained tonight so I'll leave the history and stories for the next post. I'll just leave this as a thankful post and take it easy for now. So again, thank you. Readers, well-wishers, family, friends, long-losts and never-lefts. There's more to come and hopefully people will be entertained, moved, and maybe even inspired by what goes on here. I promise some juicy bits coming up.
Wednesday, July 20, 2011
Part Eight: What Dreams May Come vol. 1
I'm riding the wave of another sleepless night while my dearly beloved snoozes rather soundly a few feet from me. It's a bit discouraging when I do everything in my power to go to sleep and I can't make it work, or if I do sleep it's fairly restless and for not very long. At this point unfortunately I'm used to a lack of sleep but that doesn't make it any more comfortable to deal with. What to do with this extra time on my hands? I dunno dude, why not write about some of the crazy stuff you dreamed about while in your little coma? Spoon.
I forget the name of the specific drug(s) I was given but around the time of my surgery I was given a cocktail to make me sleep through the whole experience. I went into surgery on January 7th, I think, and wasn't conscious again until the week of the 21st-28th. It was a little jarring to wake up and not know what day it was or what happened. The nurses would routinely ask me what day it was and where I was and when I woke up I had no idea. Freaky stuff. I've told some of my nurses that at some point I want to undergo hypnosis to remember not only the things going on in my head at this time but to see if I can remember anything going on around me as well. Fun fact: people in comas, medically-induced or otherwise can and do hear what goes on around them. They may never recall any of it but they do register what's going on.
There are A LOT of things that I remember dreaming/I believed happened and not all of it was very pleasant. Here I attempt to recall a few things, hence the vol. 1 in the title.
My mother told me that I kept talking about "the old sailor" I was talking to that would leave through the walls. She didn't tell me anything specific I said about this sailor or anything we talked about but we've come to collectively believe I was talking to my Grandfather who passed away a few years ago and who was a Navy man. It's entirely possible, though I don't tend to put stock into ghost encounters or anything like that.
I believed I was in a Japanese hospital of the future and was being cognitively and mentally tested. Why Japanese? Who knows. Through these tests I believed my captors (yes, I was being held against my will) had malicious intent and were scheming to take over the world or something to that effect. At this realization I somehow managed to rig explosives in the hospital, which was apparently the most important building in Japan, and destroy it. I remember seeing the place fall apart around me and even though I knew it almost certainly meant my own doom I was happy for thwarting their plan. Unfortunately for me, I slept and re-awoke to find that the Japanese manipulated space-time so that I never actually blew up anything and I was back to square one in my hospital bed. None of my nurses were Japanese in this dream, oddly enough.
So sure was I that this actually happened that I convinced the real life Lahey nurses that I had in fact been to Japan and I very seriously asked my parents not to think badly on me because I blew up a building in Japan. That's right, I was out of my coma enough to grab hold of my parents and tearfully tell them I did a bad thing by blowing up this building and for them not to be mad at me. They assured me that this didn't actually happen and back to sleep I went. Sometimes I can recall telling them this but again, it was all so jumbled I don't know where dreams and reality went astray.
Piggy-backing on this gem of a drug fantasy was one of the most uncomfortable things I've ever felt and probably will ever feel. Why? I know that this was one of the times that I felt myself dying. I know beyond the shadow of a doubt that I looked into the void and it scared the shit out of me. There is no way to possibly describe exactly how it felt but I know it was real.
(disclaimer: This was a very FUBAR dream so my sentence structure is probably going to be terrible.)
Not sure how this particular dreamscape began but I was in Burlington, but not the actual Burlington. This Burlington was centered around a massive hill and a dense forest. There were leagues of serpentine streets and I was trying to navigate them to make it back to the hospital. I don't know how I knew it but I was being followed by people meaning to do me harm. I happened across a family of hillbilly cannibals that were tied to the people that tried to extort money from me on the ambulance ride down (as I wrote in an earlier post.) They produced these kind of CKY/ICP videos of themselves butchering and maiming and eating other people. They told me I had to join them in these pursuits and I said there was no way I could do that and tried to escape. I managed to run and make it to a stranger's house close by who hated these monsters. From there we plotted to attack them and end their reign of terror in the community. We devised a plan to bomb their house and kill their elders, thereby scattering the younger of the family. We managed to attack them under cover of darkness, set fire to their house and kill some of the family but we couldn't completely overtake them. We fled into these fields adjacent to their house and waited for the police to come and finish the job for us but that didn't happen either. When we finally found the police we were arrested for disturbing the peace and trying to destroy this family. I pleaded with the police that they were evil, butchering and eating people but the police just said it was their right and we had no business trying to destroy them. There's a lot more to this dream but I can't recall it right now. I don't remember how it ended exactly but I couldn't defeat the cannibal hillbillies.
I was going to write about one of my experiences of knowing I was going to die but to actually put it down right now it would probably take me an hour to write and take twice as long to read. So I'll leave the full story for another post but I'll give up a little bit now, uncomfortable as it is.
One of my very lengthy dreams involved living in a "virtual" computer world where you had to know the most minute detail about computer programming to exist. Example: You couldn't just walk around and interact with things, you had to know the specifics of physics and moving bodies in space to even stand up and walk. There became camps of people of varying levels of skill at programming this reality trying to build reality to what they believed it should be. For some reason I was terrible at programming and could barely do the simplest task. Kelley and her sister Liza were in this reality and they were both geniuses. Liza and her boyfriend Mike were part of a group that were trying to build reality simply and directly and more like the physical world was. They would learn to do simple things like move an object backwards and forwards in space in order to make it possible for there to be gravity and planets and stars. This doesn't make a whole lot of sense, I know. Anyway, to get to the meat of it, their camp was at ideological war with the remainder of the world who rushed into programming reality and turned everything into a big game with no thought to the mechanics of physics or how to sustain their reality. Because of this their reality was being torn apart at the seams. That's when I knew I saw death. I was standing at the edge of a cliff and just saw blackness. Endless, cold blackness. I tried to turn away but was almost being sucked in or drawn to the dark and it scared me more than I've ever felt before because I couldn't see anything in the darkness. Eventually I did fall into the void and I could feel myself being covered by this cold emptiness but I kept thinking of physics things I learned from the other programmers and started to see miniscule points of light forming shapes and acting in logical ways in terms of gravity, attraction, flow, etc. From there I realized I could use these principles to make it back to the cliff and I did. From there I manifested a way back to the Kelley/Liza/Mike's group and told them I figured out how gravity worked in empty space so we could all be saved. There's a lot more to this but I'll stop there for now.
It's a little weird writing about it and I wish I could convey how achingly empty it felt to experience that. I knew that I was going to die. This was happening in my head while I was either being operated on or post recovery. According to the doctors I nearly died on the operating table and due to complications from my surgery almost died in SICU. I 100% believe this particular dream was my brain knowing it was going to die and fighting against it. It gives me the shakes just thinking about it. More on that later.
I'm done for the night. Maybe more later kiddos.
I forget the name of the specific drug(s) I was given but around the time of my surgery I was given a cocktail to make me sleep through the whole experience. I went into surgery on January 7th, I think, and wasn't conscious again until the week of the 21st-28th. It was a little jarring to wake up and not know what day it was or what happened. The nurses would routinely ask me what day it was and where I was and when I woke up I had no idea. Freaky stuff. I've told some of my nurses that at some point I want to undergo hypnosis to remember not only the things going on in my head at this time but to see if I can remember anything going on around me as well. Fun fact: people in comas, medically-induced or otherwise can and do hear what goes on around them. They may never recall any of it but they do register what's going on.
There are A LOT of things that I remember dreaming/I believed happened and not all of it was very pleasant. Here I attempt to recall a few things, hence the vol. 1 in the title.
My mother told me that I kept talking about "the old sailor" I was talking to that would leave through the walls. She didn't tell me anything specific I said about this sailor or anything we talked about but we've come to collectively believe I was talking to my Grandfather who passed away a few years ago and who was a Navy man. It's entirely possible, though I don't tend to put stock into ghost encounters or anything like that.
I believed I was in a Japanese hospital of the future and was being cognitively and mentally tested. Why Japanese? Who knows. Through these tests I believed my captors (yes, I was being held against my will) had malicious intent and were scheming to take over the world or something to that effect. At this realization I somehow managed to rig explosives in the hospital, which was apparently the most important building in Japan, and destroy it. I remember seeing the place fall apart around me and even though I knew it almost certainly meant my own doom I was happy for thwarting their plan. Unfortunately for me, I slept and re-awoke to find that the Japanese manipulated space-time so that I never actually blew up anything and I was back to square one in my hospital bed. None of my nurses were Japanese in this dream, oddly enough.
So sure was I that this actually happened that I convinced the real life Lahey nurses that I had in fact been to Japan and I very seriously asked my parents not to think badly on me because I blew up a building in Japan. That's right, I was out of my coma enough to grab hold of my parents and tearfully tell them I did a bad thing by blowing up this building and for them not to be mad at me. They assured me that this didn't actually happen and back to sleep I went. Sometimes I can recall telling them this but again, it was all so jumbled I don't know where dreams and reality went astray.
Piggy-backing on this gem of a drug fantasy was one of the most uncomfortable things I've ever felt and probably will ever feel. Why? I know that this was one of the times that I felt myself dying. I know beyond the shadow of a doubt that I looked into the void and it scared the shit out of me. There is no way to possibly describe exactly how it felt but I know it was real.
(disclaimer: This was a very FUBAR dream so my sentence structure is probably going to be terrible.)
Not sure how this particular dreamscape began but I was in Burlington, but not the actual Burlington. This Burlington was centered around a massive hill and a dense forest. There were leagues of serpentine streets and I was trying to navigate them to make it back to the hospital. I don't know how I knew it but I was being followed by people meaning to do me harm. I happened across a family of hillbilly cannibals that were tied to the people that tried to extort money from me on the ambulance ride down (as I wrote in an earlier post.) They produced these kind of CKY/ICP videos of themselves butchering and maiming and eating other people. They told me I had to join them in these pursuits and I said there was no way I could do that and tried to escape. I managed to run and make it to a stranger's house close by who hated these monsters. From there we plotted to attack them and end their reign of terror in the community. We devised a plan to bomb their house and kill their elders, thereby scattering the younger of the family. We managed to attack them under cover of darkness, set fire to their house and kill some of the family but we couldn't completely overtake them. We fled into these fields adjacent to their house and waited for the police to come and finish the job for us but that didn't happen either. When we finally found the police we were arrested for disturbing the peace and trying to destroy this family. I pleaded with the police that they were evil, butchering and eating people but the police just said it was their right and we had no business trying to destroy them. There's a lot more to this dream but I can't recall it right now. I don't remember how it ended exactly but I couldn't defeat the cannibal hillbillies.
I was going to write about one of my experiences of knowing I was going to die but to actually put it down right now it would probably take me an hour to write and take twice as long to read. So I'll leave the full story for another post but I'll give up a little bit now, uncomfortable as it is.
One of my very lengthy dreams involved living in a "virtual" computer world where you had to know the most minute detail about computer programming to exist. Example: You couldn't just walk around and interact with things, you had to know the specifics of physics and moving bodies in space to even stand up and walk. There became camps of people of varying levels of skill at programming this reality trying to build reality to what they believed it should be. For some reason I was terrible at programming and could barely do the simplest task. Kelley and her sister Liza were in this reality and they were both geniuses. Liza and her boyfriend Mike were part of a group that were trying to build reality simply and directly and more like the physical world was. They would learn to do simple things like move an object backwards and forwards in space in order to make it possible for there to be gravity and planets and stars. This doesn't make a whole lot of sense, I know. Anyway, to get to the meat of it, their camp was at ideological war with the remainder of the world who rushed into programming reality and turned everything into a big game with no thought to the mechanics of physics or how to sustain their reality. Because of this their reality was being torn apart at the seams. That's when I knew I saw death. I was standing at the edge of a cliff and just saw blackness. Endless, cold blackness. I tried to turn away but was almost being sucked in or drawn to the dark and it scared me more than I've ever felt before because I couldn't see anything in the darkness. Eventually I did fall into the void and I could feel myself being covered by this cold emptiness but I kept thinking of physics things I learned from the other programmers and started to see miniscule points of light forming shapes and acting in logical ways in terms of gravity, attraction, flow, etc. From there I realized I could use these principles to make it back to the cliff and I did. From there I manifested a way back to the Kelley/Liza/Mike's group and told them I figured out how gravity worked in empty space so we could all be saved. There's a lot more to this but I'll stop there for now.
It's a little weird writing about it and I wish I could convey how achingly empty it felt to experience that. I knew that I was going to die. This was happening in my head while I was either being operated on or post recovery. According to the doctors I nearly died on the operating table and due to complications from my surgery almost died in SICU. I 100% believe this particular dream was my brain knowing it was going to die and fighting against it. It gives me the shakes just thinking about it. More on that later.
I'm done for the night. Maybe more later kiddos.
Tuesday, July 19, 2011
Part Seven: A Thousand Words
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| Asleep at Wentworth-Douglas |
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| Kelley visiting me, I'm totally not attractive. |
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| Tuck me in. I HATED that breathing tube. |
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| Kelley helping me rest. |
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| Merry hospital Christmas. |
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| Vitals at Lahey? |
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| Post-op SICU. I think. |
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| Some of the nasty stuff they sucked out of me in SICU. |
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| Part man, part machine. Couldn't even breathe on my own. |
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| They needed to shave me. Jerks. Very uncomfortable conditions. |
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| More SICU vitals. |
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| Sing me to sleep. |
These are some pictures that my father took during my initial hospital stay(s). I don't remember any of these pictures being taken, especially those from Lahey SICU. I remember a bit of my Wentworth-Douglas stay but almost none of my Lahey stay; or at least I'm not sure what memories actually happened or what I dreamt. It makes me sad that I don't remember when Kelley or my parents were there but as the doctors say it's probably best that I don't remember, especially around my surgery. For awhile I thought I was going to be in the hospital for a very, very long time. I was completely helpless and dependent on these machines to supply me with air, food, and getting rid of the junk inside of me. That picture of the canisters with the fluid doesn't really capture how nasty it was to have tubes in my abdomen, back, neck, and sides sucking out this awful gunk out of me. If memory serves it was this dark, necrotic, almost sandy consistency but thankfully didn't really smell. I was lucky compared to some folks with pancreatitis because my fluid was largely trapped in abscesses in my body; some patients have the fluid creep up into their lungs, around their heart, putting pressure on all of their organs. I did end up with respiratory failure and I believe pneumonia that almost killed me.
That's something I take from these pictures and my experiences in general: I almost died. Not just once, but a few times. If the folks at Lahey and Wentworth-Douglas dropped the ball I wouldn't be here. It's not a pleasant thing to think about but it's something that crosses my mind every day. My choices nearly killed me. That's a lot of weight to carry and isn't lost on me at all. 99% of the time I laugh it off and make light of the whole experience but there are those rare times where the reality sets in and I can't handle it. That's one of the many reasons why I feel blessed and fortunate to have had and still have Kelley in my life. She keeps me sane and I don't think I would have made it without her. Apparently when I was under I kept talking about her to my nurses so when she'd visit she'd get told that I spoke very highly of her. Wish I remembered that stuff.
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And one good thing I've gleaned from this experience was the rapid weight loss. I was HUGE back then. Damn. Because of the experience of undergoing surgery, being NPO (that's "nothing by mouth" i.e. no food or water) for weeks and weeks on end and stress I lost about 70 pounds in three months. Craziness.
Part Six: For Me This Is Heaven
Yesterday marked my umpteenth visit to Lahey Clinic for followups with Dr. Pomposelli in Transplant and Dr. Piessens (pronounced Pee-sehns, not Pie-sense) in Infectious Disease. Why do I have to see a specialist in infectious disease you ask? One of the fun things about pancreatitis, not the most fun, mind you, is that my pancreas keeps leeching out this necrotic fluid into my abdominal cavity as well as other premium destinations. Sometimes, not every time, this fluid is infected with all sorts of lovely bacteria and things that make me very, very sick. You can tell it's infected because when I empty my JP drains there is quite the strong and awful odor that wafts out. The best I can describe the smell as would be rotting bandages and vinegar. Not the yummiest cocktail I can think of. I think Kelley would be in agreement with me since she has to help me change my dressings at least once a day and sometimes the smell is enough to make one gag and have to leave the room after the futility of trying to hold one's breath. Disgusting? Sure. I'm just telling it like it is, kiddos.
Anyhway, I met with Dr. Piessens first and she is a very pleasant woman who doesn't treat me like an idiot. I've got a thing against health care providers that don't talk to me like I know what I'm talking about. I've lived with this disease, they haven't so it behooves me to stay abreast of what's going on in my own body. She was asking about how I was dealing with the antibiotics I'm on to deal with my infected fluid, Cipro and Flagyl, and I told her things were pretty ok, feeling better than I was when I was last admitted. Flagyl can cause fevers, nausea, vomiting, and general crappiness. Can't say I've had much of that, doc. The only side effect I've been concerned with is the two little toes on my left foot do this weird not quite numb, not quite tingly thing sometimes. She assured me it's not the meds, if it was both of my feet would feel that way, not just wee bits. However, she did say it's more than likely nerve damage caused by my lengthy initial hospital stay but the nerves should reconnect themselves in time so it will eventually go away. My first thought was I was getting blood clots again. Huzzah! Don't have to worry about that for awhile.
Fun fact: If you've had blood clots at all, ever, you are 80%+ more likely to get them again than the average person. So kids, if you've had a blood clot don't stay in bed for longer than 72 hours at a time or else you may be in trouble.
After my brief meeting with Dr. Piessens I went down a few floors (Lahey clinic is a big ass hospital) to Transplant to see my old pal Dr. Pomposelli. It's still odd to me that I have to see the Transplant department when they didn't transplant anything, just cut away a large section of my pancreas. Actually, what they told my parents was they "power washed" my insides. A fitting description because when I was pre-surgery and in surgery I was FULL of fluid. Tubes everywhere in and out of me. There's a picture or two floating around that I'll post. It should make me uncomfortable to see how bad off I was but it's pretty interesting. Back to the story at hand: Dr. Pomposelli and I sat down for a chat, as we do every two or three weeks when I have drains in and I say
"Jimmy" as I tend to call him, not to his face.
"Jimmy," I say, "what's going down, brotherman?"
"Well Paddy, you're still draining, right?"
"Yup, 40-50 CCs or so in the back one and 20-30 in the front twice a day or so."
"Hehe, well I guess we keep them in for awhile longer then. Do you mind getting a CT scan next time?"
"Ugh. Fuck. Do I have to?"
"Well it's the best way to see what's going on in there so we can figure out what to do with these drains."
"Shit sandwich. Alright, if you think it's the best course. Can I do it in NH and just bring the disk?"
"Oh yeah, just don't trust those monkeys to send me the disk. Grab it yourself."
"Mmk, see you you in three weeks."
No lie, this is basically how we talk. Jimmy is a very frank doctor and doesn't bullshit or gloss over anything with me. It's very refreshing. Oh, and my apprehension to having a CT scan isn't unwarranted; as of this writing, since December 15th I have undergone 21 CT scans. If you have never had one or don't know much about them, CT scans are pretty innocuous things unless you consider one pass of a CT machine is the radiological equivalent of 1,000 chest X-rays. Every time I have a scan I get at least two or three passes. Sometimes over my genitals. That's an average of 62 passes or 62,000 X-rays in seven months. My body oozes barium now. That's another thing, that contrast material they make you drink/take through IV never leaves your body. I'm a walking Radioactive Man. Or Fallout Boy. Not Fall Out Boy. Makes me feel bad for those poor kids with cancer they get this stuff every day. Damn. Now, I'm not an alarmist and I'm a pretty trusting person when it comes to my doctors and nurses but it's a little disconcerting when the things they do to help me now could riddle me with cancer down the road. Let's just hope I can jump the shark again.
As a final note so I can get off here and Kelley can play her Zombie Lane game, Jimmy more or less told me that because my pancreas will eventually seal up and my liver and kidneys are surprisingly in great shape I could probably drink again if I wanted to. I really, really, wish he didn't tell me that. Not that it means I could go on benders and get wasted but if I were to have A drink socially it would be ok for my body. Ehhhh that doesn't sit well with me. I like thinking that if I drink again I will die because that's what they told my parents then me after I regained consciousness post-surgery (medically-induced comas RULE except they don't.) The finality of that ultimatum keeps me sane and sober and I very much love living sober. I'll never go back to my old life again, even for one drink because that's a person I let die on the operating table and the person that got up and is typing this now is WAY better. The only good telling me that it's ok to have a drink does is says I can take NyQuil or have food with alcohol in it and not die in the process. Close the door, thank you very much, that's all I want to glean from this. I've stared death in the face. Literally. You know what I learned? What I have now is far better than the alternative. Sorry Jimmy, no hooch for me but I will enjoy some delicious green tea and cranberry juice now that I'm off of Coumadin.
Anyhway, I met with Dr. Piessens first and she is a very pleasant woman who doesn't treat me like an idiot. I've got a thing against health care providers that don't talk to me like I know what I'm talking about. I've lived with this disease, they haven't so it behooves me to stay abreast of what's going on in my own body. She was asking about how I was dealing with the antibiotics I'm on to deal with my infected fluid, Cipro and Flagyl, and I told her things were pretty ok, feeling better than I was when I was last admitted. Flagyl can cause fevers, nausea, vomiting, and general crappiness. Can't say I've had much of that, doc. The only side effect I've been concerned with is the two little toes on my left foot do this weird not quite numb, not quite tingly thing sometimes. She assured me it's not the meds, if it was both of my feet would feel that way, not just wee bits. However, she did say it's more than likely nerve damage caused by my lengthy initial hospital stay but the nerves should reconnect themselves in time so it will eventually go away. My first thought was I was getting blood clots again. Huzzah! Don't have to worry about that for awhile.
Fun fact: If you've had blood clots at all, ever, you are 80%+ more likely to get them again than the average person. So kids, if you've had a blood clot don't stay in bed for longer than 72 hours at a time or else you may be in trouble.
After my brief meeting with Dr. Piessens I went down a few floors (Lahey clinic is a big ass hospital) to Transplant to see my old pal Dr. Pomposelli. It's still odd to me that I have to see the Transplant department when they didn't transplant anything, just cut away a large section of my pancreas. Actually, what they told my parents was they "power washed" my insides. A fitting description because when I was pre-surgery and in surgery I was FULL of fluid. Tubes everywhere in and out of me. There's a picture or two floating around that I'll post. It should make me uncomfortable to see how bad off I was but it's pretty interesting. Back to the story at hand: Dr. Pomposelli and I sat down for a chat, as we do every two or three weeks when I have drains in and I say
"Jimmy" as I tend to call him, not to his face.
"Jimmy," I say, "what's going down, brotherman?"
"Well Paddy, you're still draining, right?"
"Yup, 40-50 CCs or so in the back one and 20-30 in the front twice a day or so."
"Hehe, well I guess we keep them in for awhile longer then. Do you mind getting a CT scan next time?"
"Ugh. Fuck. Do I have to?"
"Well it's the best way to see what's going on in there so we can figure out what to do with these drains."
"Shit sandwich. Alright, if you think it's the best course. Can I do it in NH and just bring the disk?"
"Oh yeah, just don't trust those monkeys to send me the disk. Grab it yourself."
"Mmk, see you you in three weeks."
No lie, this is basically how we talk. Jimmy is a very frank doctor and doesn't bullshit or gloss over anything with me. It's very refreshing. Oh, and my apprehension to having a CT scan isn't unwarranted; as of this writing, since December 15th I have undergone 21 CT scans. If you have never had one or don't know much about them, CT scans are pretty innocuous things unless you consider one pass of a CT machine is the radiological equivalent of 1,000 chest X-rays. Every time I have a scan I get at least two or three passes. Sometimes over my genitals. That's an average of 62 passes or 62,000 X-rays in seven months. My body oozes barium now. That's another thing, that contrast material they make you drink/take through IV never leaves your body. I'm a walking Radioactive Man. Or Fallout Boy. Not Fall Out Boy. Makes me feel bad for those poor kids with cancer they get this stuff every day. Damn. Now, I'm not an alarmist and I'm a pretty trusting person when it comes to my doctors and nurses but it's a little disconcerting when the things they do to help me now could riddle me with cancer down the road. Let's just hope I can jump the shark again.
As a final note so I can get off here and Kelley can play her Zombie Lane game, Jimmy more or less told me that because my pancreas will eventually seal up and my liver and kidneys are surprisingly in great shape I could probably drink again if I wanted to. I really, really, wish he didn't tell me that. Not that it means I could go on benders and get wasted but if I were to have A drink socially it would be ok for my body. Ehhhh that doesn't sit well with me. I like thinking that if I drink again I will die because that's what they told my parents then me after I regained consciousness post-surgery (medically-induced comas RULE except they don't.) The finality of that ultimatum keeps me sane and sober and I very much love living sober. I'll never go back to my old life again, even for one drink because that's a person I let die on the operating table and the person that got up and is typing this now is WAY better. The only good telling me that it's ok to have a drink does is says I can take NyQuil or have food with alcohol in it and not die in the process. Close the door, thank you very much, that's all I want to glean from this. I've stared death in the face. Literally. You know what I learned? What I have now is far better than the alternative. Sorry Jimmy, no hooch for me but I will enjoy some delicious green tea and cranberry juice now that I'm off of Coumadin.
Saturday, July 16, 2011
Part Five: Building A Better Robot.
As most people that know me are aware I've spent the whole of my adult life embroiled in the art, craft, and job of creating music. I was a proud member of some fantastic bands, all of which I left prematurely because of my own foolishness and shortsightedness. For some reason I was never happy where I was no matter how fun or successful it was; always looking ahead for something more, a bit impatiently. There was only one instance where I was asked to leave and it was because of my foolish choices and how I chose to carry myself. Possibly one of the biggest mistakes of my life and it directly led to some of my problems that landed me in the hospital in the first place. I'll leave that story for another time. Back to the business of creation and art, all the while I was playing in bands with other folks I always wrote songs for myself and did a number of solo performances especially at The Sad Cafe in Plaistow, NH. Linda, the owner, was and probably still is a big fan of what I was up to and maybe I'll play there again at some point. I forget the initial genesis of the name but I started calling my solo ventures Building A Better Robot because I've got that pretentious art-ass streak that stops me from just performing under my own moniker. Really though, I like the idea of writing songs and if friends want to help out from time to time, awesome. Kind of a band that isn't a band. The name Building A Better Robot has taken on new meaning especially post-surgery/hospitalization because it literally gave me a chance to rebuild myself. Why a robot? Maybe it's my commentary on the nature of playing music, especially in a particular "scene" or whathaveyou in that as performers we sometimes take on the role of automatons, going through the motions and rituals of playing in front of people. Anyone who's been on tour and plays the same setlist every night can see some truth in that, no matter how many different idiosyncrasies creep up every night it's still the same songs. Hell, practicing itself is a robotic act because it's rote memorization and repeating the same lines, phrases, melodies over and over again.
Or it could be I just like robots.
One fun heartwarming sidenote to this name business comes from my tenure with The Minus Scale. I joined them in 2005(?) and it was like being called up into the big leagues. I had been a fan of theirs and played with them so when I left my band at the time and they asked me to join I was ecstatic. We had a lot of fun the years we played together and I love those dudes. Our de facto leader AJ and I lived together for a spell, spent a lot of time on the road together (as bands do) and he was always sort of the industry maestro for us with his finger firmly on the pulse of our music scene. As far as I recall the only time he ever really gave me a compliment about my own music ventures was when he told me that Building A Better Robot was a great name. Maybe I hang onto that moniker because it got the AJ seal of approval. Who knows? Getting approval and validation from people who I believe are more talented or have a better ear than me has always been high on my list. One good byproduct of all of my hospital time is it's given me fodder for writing and I'm pursuing my music the most aggressively I have since I left my last band in 2009. Or was it 2008?
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My winter was looking to be spent entirely indoors and in a hospital bed. Christmas and New Year's were lost in the halls of Wentworth-Douglas and it was a pretty big bummer. I love Christmas. I'm not really into gifts but I love the feelings of Christmas, the songs, and hot cocoa with cinnamon. For real, if you asked me to describe Christmas as simply as possible I'd say it tastes like hot cocoa with cinnamon. Anyway, at this point in my hospital life I had seen my family a bit, Kelley of course, her family and my good buddy Angel came to visit with his daughter. We had worked together previously and became fast friends. He coached me through some of the bullshit when they thought I was going to be diabetic (he's lived with diabetes for years) and is a genuine friend. Around this time things were progressing not entirely well and the doctors were figuring out where to transfer me for surgery as W-D isn't equipped to handle pancreatic surgery, at least not the kind I needed.
This is all pretty significant because there are only three doctors/hospitals in New England that will do the kind of surgery I required. Three. My doctors got into contact with all three and only one agreed to help me, Dr. James Pomposelli and the staff of Lahey Clinic in Burlington, MA. The reality of that didn't hit me until long after my surgery: if they had said no to treating an unemployed, uninsured very sick dude I would be dead now. I was very, very sick. Whatever higher power is looking out for me saw fit to get me the help I needed in Massachusetts so off I went. My transfer was being handled by ambulance which was a bit weird for me because I had only been in an ambulance once before years ago after a car accident. This was when I was still a little out of my mind because one of the oddest things happened on the way down. I was (and am still a little) convinced the next turn of events actually happened though hearing from Kelley and my family about my mental state at the time casts a pallor on my story. On the way down to Lahey the EMT in the back with me handed me a piece of paper basically saying we know where you live/have your info and are going to extort money from you and your girlfriend. Thousands of dollars which I nor Kelley had. It said if I didn't pay them they'd come to our apartment and kill our pets, harm or even kill us, etc. It also said that no one would believe me if I said anything because I was heavily medicated and not in my right mind. I never spoke a word of it and never heard from them again. Do I really believe this happened? No. However, I think it's plausible that something like that could happen somewhere. A helpless victim strapped to a gurney in an inclosed space could easily be shaken down by scumbags and profiteers. Stranger things have happened. Anyway, we made it to Lahey without incident and I came to my new home for the next month.
I arrived at Lahey Clinic in early January, the 3rd, I believe and spent my first few days on the sixth floor before being prepped and shipped down to the OR. According to my parents' accounts I was still a little combative at this point but I don't remember any of it. Hopefully writing things down will help jog my memory because having long stretches of your life be blank is really uncomfortable. It's not unlike being blackout drunk. I know some fools who think it's funny or a sign of how badass they are drinking and blacking out but it's never been comfortable for me. I'm a guy that likes to know what happens to him and recall events and things. Later I found out that they gave me drugs so I wouldn't remember anything involving and around my surgery but that's for another day. I still didn't grasp that I was close to death at this point. My insides were turning against me and were primed to kill me if we didn't intervene. Thank God we did.
Or it could be I just like robots.
One fun heartwarming sidenote to this name business comes from my tenure with The Minus Scale. I joined them in 2005(?) and it was like being called up into the big leagues. I had been a fan of theirs and played with them so when I left my band at the time and they asked me to join I was ecstatic. We had a lot of fun the years we played together and I love those dudes. Our de facto leader AJ and I lived together for a spell, spent a lot of time on the road together (as bands do) and he was always sort of the industry maestro for us with his finger firmly on the pulse of our music scene. As far as I recall the only time he ever really gave me a compliment about my own music ventures was when he told me that Building A Better Robot was a great name. Maybe I hang onto that moniker because it got the AJ seal of approval. Who knows? Getting approval and validation from people who I believe are more talented or have a better ear than me has always been high on my list. One good byproduct of all of my hospital time is it's given me fodder for writing and I'm pursuing my music the most aggressively I have since I left my last band in 2009. Or was it 2008?
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My winter was looking to be spent entirely indoors and in a hospital bed. Christmas and New Year's were lost in the halls of Wentworth-Douglas and it was a pretty big bummer. I love Christmas. I'm not really into gifts but I love the feelings of Christmas, the songs, and hot cocoa with cinnamon. For real, if you asked me to describe Christmas as simply as possible I'd say it tastes like hot cocoa with cinnamon. Anyway, at this point in my hospital life I had seen my family a bit, Kelley of course, her family and my good buddy Angel came to visit with his daughter. We had worked together previously and became fast friends. He coached me through some of the bullshit when they thought I was going to be diabetic (he's lived with diabetes for years) and is a genuine friend. Around this time things were progressing not entirely well and the doctors were figuring out where to transfer me for surgery as W-D isn't equipped to handle pancreatic surgery, at least not the kind I needed.
This is all pretty significant because there are only three doctors/hospitals in New England that will do the kind of surgery I required. Three. My doctors got into contact with all three and only one agreed to help me, Dr. James Pomposelli and the staff of Lahey Clinic in Burlington, MA. The reality of that didn't hit me until long after my surgery: if they had said no to treating an unemployed, uninsured very sick dude I would be dead now. I was very, very sick. Whatever higher power is looking out for me saw fit to get me the help I needed in Massachusetts so off I went. My transfer was being handled by ambulance which was a bit weird for me because I had only been in an ambulance once before years ago after a car accident. This was when I was still a little out of my mind because one of the oddest things happened on the way down. I was (and am still a little) convinced the next turn of events actually happened though hearing from Kelley and my family about my mental state at the time casts a pallor on my story. On the way down to Lahey the EMT in the back with me handed me a piece of paper basically saying we know where you live/have your info and are going to extort money from you and your girlfriend. Thousands of dollars which I nor Kelley had. It said if I didn't pay them they'd come to our apartment and kill our pets, harm or even kill us, etc. It also said that no one would believe me if I said anything because I was heavily medicated and not in my right mind. I never spoke a word of it and never heard from them again. Do I really believe this happened? No. However, I think it's plausible that something like that could happen somewhere. A helpless victim strapped to a gurney in an inclosed space could easily be shaken down by scumbags and profiteers. Stranger things have happened. Anyway, we made it to Lahey without incident and I came to my new home for the next month.
I arrived at Lahey Clinic in early January, the 3rd, I believe and spent my first few days on the sixth floor before being prepped and shipped down to the OR. According to my parents' accounts I was still a little combative at this point but I don't remember any of it. Hopefully writing things down will help jog my memory because having long stretches of your life be blank is really uncomfortable. It's not unlike being blackout drunk. I know some fools who think it's funny or a sign of how badass they are drinking and blacking out but it's never been comfortable for me. I'm a guy that likes to know what happens to him and recall events and things. Later I found out that they gave me drugs so I wouldn't remember anything involving and around my surgery but that's for another day. I still didn't grasp that I was close to death at this point. My insides were turning against me and were primed to kill me if we didn't intervene. Thank God we did.
Friday, July 15, 2011
Part Four: Let It Snow, Baby...Let It Reindeer.
I was told by the nurses at Wentworth-Douglas that I would be placed in the Intensive Care Unit so I could be more closely monitored because of my recent diagnosis of having pancreatitis. When they told me I got really scared because I didn't know if that meant I was really in dire straits or what was going on. Imagine being told you're possibly terminally sick while medicated enough that your brain can't really process what's going on. Scary. When I arrived at the ICU the transport guy put me in my new bed and my nurse was very helpful and attentive. She hooked me up to all kinds of monitors and things and told me I would have to be monitored 24/7, no matter what because if they lost signal they'd think I was dead or something. Great, I can't have a bowel movement without assistance or they'll think I was really in trouble. At this point I really thought this was how life was going to be from now on. After trying in vain for a bit to get comfortable enough to sleep I started to take in my surroundings and for some reason kept thinking about Lost. When they first wheeled me in to the ICU I thought it looked like an octagon which made me think of the Dharma Initiative logos and so I associated this place with Lost. Anyway, I think I managed to sleep a little and was later visited by my parents as well as Kelley and her family. Her sister Liza was home for the holidays and I felt sorry for all of them having to be there in the ICU with me around Christmas time. I remember Kelley fighting back tears and that made me feel really awful too. Seeing her cry is far from the top of my awesome list. One good point about this point was it was the first time our parents had met. Sick people: bringing families together since the dawn of time. They hung out for a bit and left. Later that night my Lost fixation proved to get me kicked out of the ICU when I was having this bizarre series of dreams about being locked in some Dharma station. I kept hearing the beep from the Swan computer and thought I heard the Others and all of this crazy stuff. The fact that I kept having the same dream over and over proved to be too much because I finally woke up and just said "fuck this" and took all of the IV's out of my arms, I believe I had four in at the time. Needless to say my nurse rushed in and was not happy to see her patient a raving bloody mess. I kept telling her I had to prove that I was awake and not crazy so that's why I did it. She and another nurse cleaned and bandaged me up and had to look all over for enough supplies to get me re-IV-ed. I don't remember how much longer I was in that room but it wasn't very long until I was placed back in a gen-pop hospital room. This would not be the end to my craziness, unfortunately. While I was back in the normal rooms I truly, truly believed I was being held prisoner by my new nurses and tried to escape. Not sure if that was real or not but it freaked me out enough that I was being very combative with the nurses and may or may not have had hospital security restrain me from actually trying to leave.
As a quick sidenote, let's call this a public service announcement. When I was initially hospitalized I was still drunk (lesson, kids: it takes as long as you've been drinking to get alcohol out of your system so if you've been drinking for four hours at a bar it'll take you at least that long to fully sober up. And no, eating food or drinking water/tea/coffee will not make you any more sober.) for a bit and THEN detoxed so add very strong painkillers to that cocktail and I was very messed up for a good amount of time. I will never, ever tell someone they shouldn't drink or anything like that but at least in my case what starts out normal, social and innocent can quickly steamroll into something you don't want. True story.
As I said before this was around Christmas and I felt like an asshole for missing out on the holiday and being away from Kelley and our families. My parents brought me some cool Christmas stuff like a Lego castle and sticker book (grown men can still play with Lego's, ok?!) and the Official Lost Encyclopedia. This was an epic win for me because it's as close to the Lost bible as a civilian can get and very few people know how far my Lost geekdom truly stretches. Unfortunately the book weighs about twenty pounds so it was a little tough to try and read in my current state. Actually, ha! Hell, I should send Darlton a letter and tell them how much of their stuff ended up in my medical emergency. I'll have to remember to do that. Also, and this is important to mention, my parents brought me my own Charlie Brown tree for my room. That tree kept me company and was the subject of endless questions from nursing staff. I'm sorry, Wentworth-Douglas nurses, you may be great at health care but how do you not know what a Charlie Brown tree is?! Do you live in caves? This tree was important because I was transferred to a different room and they somehow lost my tree. Gone. Kaput. Someone at that hospital walked off with my sad little tree. Thanks, bros. I think at this point I had been in the hospital for two weeks and lived in four or five different rooms, mostly on the third floor. I still have to send them flowers and cookies because those poor people dealt with a lot of bullshit from me and did it with smiles on their faces. God bless you fine folks.
Ok, that about does it for now. Next we get to how I got to spend New Year's in a hospital bed, other visitations, further crazy stories that may or may not have actually happened and transfer to the fateful Lahey Clinic.
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Oh, and as for those pictures at the top, I'm figuring out how to add photos to my entries and not make it look awkward. As for the pictures themselves, I realized not everyone will know what I'm talking about when I mention specific medical bits so those are current pictures of my Jackson Pratt drains. (Notice the sweet scar on my belly courtesy of Dr. James Pomposelli, the man who effectively saved my tookus.) As of this writing I have had seven seperate JP's in my abdomen/flank/back. They're fun.
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