Yesterday evening about 9pm my mom and I finally made it out of Philadelphia, and by around 12am we were in the Big Easy. At the moment I am totally exhausted (1am bedtime being by far the latest night for me in a couple of months) but also really really glad to be home. My whole family pitched in to dress up/personalize the guest room at my mom's house so that I'd have something, well, homey to come back to, and I have a nice space to rest and hopefully recover over the next few months. I am looking forward to seeing the BR peeps over the next few weeks :) but am so going to so miss all my 'illadelph kids :(. For all you young, impressionable minds who follow this blog purely for its pearls of wisdom - falling in love with two places and the people in them is great. Just make sure those places are 3 hrs driving or less apart. My heart is permanently stretched across the country. boo.
So, I, being totally out of touch with most things at the moment, was unaware that the Essence Festival is going on right now in New Orleans. I discovered this yesterday when our plane was definitely at least 2/3 filled with excited Essence Fest-goers. It's usually fun to be around a 'vibe' - a bunch of people all excited about the same thing, all looking forward to getting somewhere....but, not quite so much when you've been sitting up for longer than you have in 2 months and you feel like your stomach might come open (no, that's not really a possibility - I'm just paranoid). I had a middle seat between Eric, a young gentleman with a video camera who wanted to interview people on the plane and insisted that both me and the other girl on in our row watch his promotional video (for his Wilimington, DE-based rap group Free Agents) - the video consisted of about 20 minutes of in-studio time where the Free Agents were so full of free agency that no volitions could be tamed or turned and thus no rap was rapped and about 20 minutes of a short 'documentary' piece titled Fienz Gone Wild, taped from Eric's front stoop, in which Fienz and his lady friend, two neighborhood crackheads, have some sort of battle with a stick (Fienz) and a mop (lady friend). Lady friend seems to grow disillusioned with the whole situation 10 min in, throws her mop at a passer-by, and leaves Fienz to beat the sidewalk, trashcans, and the middle of the street with his stick (to little avail). Eric plans on shopping this around to producers at the festival. On my other side was Sophia - quiet and nice, she was somehow involved in the car wreck that ended the life of TLC's Lefty. Details were not forthcoming.
Anyway, sorry for the ramble - hope you're all doing well. - Mary
Friday, July 6, 2007
Sunday, July 1, 2007
Discharged
I was actually discharged from the hospital yesterday (!)(!!) - about a week after surgery. I'm going to be 'living' at the Penn Tower hotel with my mom for probably about another week until I have a post-op appointment (hey ho the staples must go) and am deemed 'able
to fly.' That's a little scary considering it's hard to sit up for two hours now, so flying home is going to be a bit of a trial.
The first weeks post major surgery - it turns out - are actually not the stuff of dreams, but I guess its an unavoidable part of the game. (What is this 'game' - how did I end up playing it?). The first couple of days post surgery, at least in my case, one has an epidural - this means you feel NOTHING! in a good way. You begin to think - surgery? what surgery? It didn't even hurt! Then they remove the epidural.
It is replaced by a morphine pump with a little button that is placed in your hand, and you are given every junkie's dream - morphine on command. You feel twinges, but they are relieved with a mild finger movement. Then they take away the morphine pump.
It is replaced by oral pain pills that you take every 4 hours. And everything changes. Surgery, what surgery? Oh. That surgery. That incision. Those staples. My pain medication is called Dilated and is pronounced very, very similarly to deluded, which is the way I felt about the doctor who took away my morphine pump for a while.
Now, after that rant - It is much nicer to be out of the hospital - a bit of autonomy and a lack of being woken up 5 times a night will go a long way - but being at home will be a huge step up still. Logan is in town this weekend, being nice enough to sit around with me while I
am possibly the most boring person alive, watching episodes of the office and drinking smoothies, so that is nice :)
Hope you are all doing well - Mary
to fly.' That's a little scary considering it's hard to sit up for two hours now, so flying home is going to be a bit of a trial.
The first weeks post major surgery - it turns out - are actually not the stuff of dreams, but I guess its an unavoidable part of the game. (What is this 'game' - how did I end up playing it?). The first couple of days post surgery, at least in my case, one has an epidural - this means you feel NOTHING! in a good way. You begin to think - surgery? what surgery? It didn't even hurt! Then they remove the epidural.
It is replaced by a morphine pump with a little button that is placed in your hand, and you are given every junkie's dream - morphine on command. You feel twinges, but they are relieved with a mild finger movement. Then they take away the morphine pump.
It is replaced by oral pain pills that you take every 4 hours. And everything changes. Surgery, what surgery? Oh. That surgery. That incision. Those staples. My pain medication is called Dilated and is pronounced very, very similarly to deluded, which is the way I felt about the doctor who took away my morphine pump for a while.
Now, after that rant - It is much nicer to be out of the hospital - a bit of autonomy and a lack of being woken up 5 times a night will go a long way - but being at home will be a huge step up still. Logan is in town this weekend, being nice enough to sit around with me while I
am possibly the most boring person alive, watching episodes of the office and drinking smoothies, so that is nice :)
Hope you are all doing well - Mary
Sunday, June 24, 2007
Day 2 Post Surgery
Alarm clock just not giving you the old kick in the pants these days? "snooze" and then "snooze" again? Well, folks, I have the answer to your can't-wake-up woes. Invite a team of two GI surgeons to come into your room at 6am, turn on the fluorescent light, say commandingly "we're taking that suction tube out now," have one of them hold your shoulder while the other rapidly un-tapes and then pulls out a tube that has been running through your nose, down your throat, and into your stomach. (Forget you invited them or the whole effect will be lost.) Honestly, that's probably the best way to accomplish said tube removal as any prediscussion would lead to the conclusion that it simply should not be done. But bloody onions, what a way to wake up!
Day 2 post surgery: little less pain, little more energy, slow and steady said the tortoise.
Random observations:
More than half the phlebotomy staff at the Hospital of the University of Pennsylvania is Russian. And they all announce themselves in the same way: (drawled eastern European accent) "Hellllo, I am he'a to take you blood." It's a little skin-crawly and a little hilarious.
When an anesthesiologist says, "yes, this is going to hurt a lot but after the surgery you won't remember this part happened" did it hurt? If I hurt in a blackout do I say ouch?
......medicated ramblings.....peace to us all - MG
Day 2 post surgery: little less pain, little more energy, slow and steady said the tortoise.
Random observations:
More than half the phlebotomy staff at the Hospital of the University of Pennsylvania is Russian. And they all announce themselves in the same way: (drawled eastern European accent) "Hellllo, I am he'a to take you blood." It's a little skin-crawly and a little hilarious.
When an anesthesiologist says, "yes, this is going to hurt a lot but after the surgery you won't remember this part happened" did it hurt? If I hurt in a blackout do I say ouch?
......medicated ramblings.....peace to us all - MG
Saturday, June 23, 2007
spleenet
Well friends, a weight has been lifted from me. Yesterday afternoon I had an operation to remove my colon (colectomy, in official medical terminology). Those of you who know me well...and probably most people who've met me in passing...probably wouldn't argue with a
description of me as 'stubborn' (though I prefer 'steadfast in my beliefs and pursuits). In the current situation, I appear to have been able to take this mental trait straight on to corporeal. My body simply would have nothing to do with the 'medical route' and so surgery became the best path.
So, I'm minus one colon BUT it turns out I have 2 spleens!!! The surgeon says this is not really that uncommon, the second one being very small and actually called a spleenet :)
My surgeon, a woman who radiates competence and overall kindness (like exactly what you want from a surgeon) says the surgery went very well. It will take some time to recover (duh), but for one day out, I'm feeling pretty well, have a button that I push that feeds me pain drugs, may get to eat real food again pretty soon, and am one thankful little spleenet.
miss you all - MG
description of me as 'stubborn' (though I prefer 'steadfast in my beliefs and pursuits). In the current situation, I appear to have been able to take this mental trait straight on to corporeal. My body simply would have nothing to do with the 'medical route' and so surgery became the best path.
So, I'm minus one colon BUT it turns out I have 2 spleens!!! The surgeon says this is not really that uncommon, the second one being very small and actually called a spleenet :)
My surgeon, a woman who radiates competence and overall kindness (like exactly what you want from a surgeon) says the surgery went very well. It will take some time to recover (duh), but for one day out, I'm feeling pretty well, have a button that I push that feeds me pain drugs, may get to eat real food again pretty soon, and am one thankful little spleenet.
miss you all - MG
Thursday, June 21, 2007
Remicade to the Rescue (?)
Well, took my second infusion of Remicade yesterday - to keep people reading I'll interject quasi interesting facts such as: Remicade is an antibody that is biologically part mouse! I've been craving cheese! (I actually crave any and all foods as I have been being fed by intravenous nutrition for a couple of weeks now - It's amazing what actually not be starved but starved of sensation can make you want for.)
Unfortunately, so far the encouraging effects seen after the first infusion are absent. That's, well, discouraging and brings the possibility of surgery closer to the proverbial table. Appreciations for prayers if you pray and thoughts if you think as that rather scary and confusing decision moves into the sightlines.
A few random observations: Ragtime by EL Doctorow is a great book. thanks John :)
Buying a giant frog balloon instead of 'reading material' as suggested by your mother is a wise decision. thanks rosie :)
Love - Mary
Unfortunately, so far the encouraging effects seen after the first infusion are absent. That's, well, discouraging and brings the possibility of surgery closer to the proverbial table. Appreciations for prayers if you pray and thoughts if you think as that rather scary and confusing decision moves into the sightlines.
A few random observations: Ragtime by EL Doctorow is a great book. thanks John :)
Buying a giant frog balloon instead of 'reading material' as suggested by your mother is a wise decision. thanks rosie :)
Love - Mary
Wednesday, June 20, 2007
Letter from Mary
Hey Friends,
First, thank you all for your support and interest in my health. One learns many lessons of patience, acceptance, etc. with an extended hospital stay, but one amazing thing one may learn is how much support and care they have scattered out in the world.
With the help of the technical expertisse herself, Rosie Daniel, I wanted to give you all a way to check in on me as (in)frequently as you choose. Not so much because I am interesting, but rather because my current situation makes it hard for me to be consistent in my communication with everyone I'd like to be. Hopefully I can keep this updated every day or two.
History (cause we love the drama):
At the beginning of May, while preparing for my inevitably fabulous photo opening at International House :?, working on First Person Arts' major fundraiser, and running up against the end of my lease, my stomach started to hurt a bit. and a bit and a bit and a bit bit more. On May 5th when my Logan arrived into town to view inevitable fabulousness and have a veggie cheesesteak, he was instead forced to revert to paramedic mode days and drag my dehydrated, dirty sad-girl bum to the ER.
To Pick up the Pace: I was diagnosed with acute colitis, which basically means major inflammation of the colon. The doctors spent some time trying to determine whether this was an infection or an inflammatory condition - IBD - either Chron's Diseases or Ulcerative Colitis. They were unable to do so, but send me home on steroids, which is the common treatment for colitis. I checked myself back into the emergency department on May 22 with all symptoms back. More steroids, no luck. Two weeks ago I took a drug called Remicade and will take my second infusion of that today. Many things remain in flux. The Remicade may help me to turn the corner. Surgery is also an option that is on the table, and is an option that is used pretty routinely in acute colitis. I am also in the flux of being stuck in Philadelphia and hoping to go back to Baton Rouge as soon as possible. Depending on the effects of the Remicade this time, I may be able to transfer to a hospital there fairly soon.
First, thank you all for your support and interest in my health. One learns many lessons of patience, acceptance, etc. with an extended hospital stay, but one amazing thing one may learn is how much support and care they have scattered out in the world.
With the help of the technical expertisse herself, Rosie Daniel, I wanted to give you all a way to check in on me as (in)frequently as you choose. Not so much because I am interesting, but rather because my current situation makes it hard for me to be consistent in my communication with everyone I'd like to be. Hopefully I can keep this updated every day or two.
History (cause we love the drama):
At the beginning of May, while preparing for my inevitably fabulous photo opening at International House :?, working on First Person Arts' major fundraiser, and running up against the end of my lease, my stomach started to hurt a bit. and a bit and a bit and a bit bit more. On May 5th when my Logan arrived into town to view inevitable fabulousness and have a veggie cheesesteak, he was instead forced to revert to paramedic mode days and drag my dehydrated, dirty sad-girl bum to the ER.
To Pick up the Pace: I was diagnosed with acute colitis, which basically means major inflammation of the colon. The doctors spent some time trying to determine whether this was an infection or an inflammatory condition - IBD - either Chron's Diseases or Ulcerative Colitis. They were unable to do so, but send me home on steroids, which is the common treatment for colitis. I checked myself back into the emergency department on May 22 with all symptoms back. More steroids, no luck. Two weeks ago I took a drug called Remicade and will take my second infusion of that today. Many things remain in flux. The Remicade may help me to turn the corner. Surgery is also an option that is on the table, and is an option that is used pretty routinely in acute colitis. I am also in the flux of being stuck in Philadelphia and hoping to go back to Baton Rouge as soon as possible. Depending on the effects of the Remicade this time, I may be able to transfer to a hospital there fairly soon.
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