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.
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