Another angle... it has some blond streaks in it, too. Should make for much more attractive bed head.
. . . . Random thoughts about nothing in particular, executed with alternating fits of bitchiness and/or sentimentality.
Tuesday, March 21, 2006
Saturday, March 18, 2006
Big, big news!
My appt. with Dr. Delcore did not go well, he remains steadfast (read: stubborn as a horse's ass) about me needing a nasal feeding tube and saying that my albumin (a form of protein that helps the body heal) is still too low. So I followed through with my plans to get a second opinion, as I wanted to look into getting away from KU Med center as my primary source of care anyway.
So I spent St. Patrick's Day at an appt. with Dr. Jeff Reese at St. Luke's in KC, MO. He is my new hero. He is awesome. He's originally from Pittsburg, is bald, wears glasses, and says "Yada yada yada" a lot. He totally has some George Costanza thing going on. Anyway, he's an expert in pancreatic and liver issues, and he's extremely positive that I am ready for surgery and we're going to get this show on the road! Heather went with me to both appointments, and was also struck by how positive this doctor was, compared with just about every other doc. I've had during the past 10 months. I had 3 pages of questions to ask Dr. Reese, and he was very patient and thorough. Much to my surprise, I found myself just going ahead and scheduling the surgery right then and there.
So, on this coming Thursday, March 23rd, I will undergo a "Roux-Y Hepatico Jejunostomy with insertion of J-tube and G-tube." The first part of that means that they will correct the strictures in the biliary tubes (the tubes running from my liver) by sewing them directly to my small intestines. The J-tube is a feeding tube that ends in the small intestine, and the G-tube, which is ultimately the preferred feeding tube, will end directly in the stomach. I guess this way they'll both be in place at once and can be used as needed for the next 6-8 weeks after the surgery. He thinks that once the biliary system is running correctly, my eating will improve dramatically and that the tubes will not be necessary for very long. This is great news.
The scary part is that the surgery is HUGE... they'll open up my 6 inch scar from the pancreatectomy, and then extend that incision even farther down, so I'll be gutted like a fish. He expects this whole procedure to take 3-4 hours on the operating table. I am scared, but this means at least that I am moving forward, and this could potentially be the last big thing I'll have to deal with in this long and painful illness. It would be awesome to be relatively healthy again by May.
He said that I'll spend the first 24 hours in the recovery room, and then I'll go to a regular room at the hospital for at least a week. He also said that I'll be at home recovering and feeling pretty icky for 3-4 weeks after that.
Now I am trying to round up my ducks and put them all in a row. I am going to open a savings acct. with ATM access next week so that people can pay my bills, and hopefully the big rummage sale will bring in some money to deposit in that account! Heather is just working her little butt off organizing this monster of a project, and we're both recruiting anyone and everyone to help with the sale, donate items, sell raffle tickets, and be there to shop on APRIL 1st!! Don't forget, it's at Odessa's restaurant parking lot (12th and Connecticut). Andy is in Las Vegas right now, but when he returns he's working with Stu at Stu's Midtown tavern about having a benefit fish fry/concert to raise money also. That would be soooo cool.
I am sad that Dr. Stuever is on vacation right now, as I am hesitant to go ahead with all of this with him out of town, but this is what we wanted, so I am doing it. It'll all be done with when he returns from Paris... what a nice vacation!!
If any goddesses are reading this, I need a special goddess pow wow on Monday night... I plan on going to the Brewery for a while to gather some good positive goddess energy prior to the surgery, hope that everyone can be there!
I also need to re-do my CONTACT list of people who want to be in the know when I come out of surgery, etc. so if you want to be on that list, email me your contact info and I'll be sure that Ginger has all of that. My parents are coming in on Wednesday to spend the night and take me in on Thursday morning... I imagine they'll be here for a few days until I am out of the woods, so to speak.
So it's 5 am and I my mind is just reeling with all of the stuff that I need to do before Wednesday, including cleaning my house up, washing sheets for the beds, opening that account, finishing up getting stuff donated for the Pancake Feed for The Arc, telling them at work that I am going to be out for the next 6 weeks, paying bills, worrying about money, taking Emily and her ass problem back to the vet, and seeing as many friends as possible before going in.
This should be an interesting week.
So I spent St. Patrick's Day at an appt. with Dr. Jeff Reese at St. Luke's in KC, MO. He is my new hero. He is awesome. He's originally from Pittsburg, is bald, wears glasses, and says "Yada yada yada" a lot. He totally has some George Costanza thing going on. Anyway, he's an expert in pancreatic and liver issues, and he's extremely positive that I am ready for surgery and we're going to get this show on the road! Heather went with me to both appointments, and was also struck by how positive this doctor was, compared with just about every other doc. I've had during the past 10 months. I had 3 pages of questions to ask Dr. Reese, and he was very patient and thorough. Much to my surprise, I found myself just going ahead and scheduling the surgery right then and there.
So, on this coming Thursday, March 23rd, I will undergo a "Roux-Y Hepatico Jejunostomy with insertion of J-tube and G-tube." The first part of that means that they will correct the strictures in the biliary tubes (the tubes running from my liver) by sewing them directly to my small intestines. The J-tube is a feeding tube that ends in the small intestine, and the G-tube, which is ultimately the preferred feeding tube, will end directly in the stomach. I guess this way they'll both be in place at once and can be used as needed for the next 6-8 weeks after the surgery. He thinks that once the biliary system is running correctly, my eating will improve dramatically and that the tubes will not be necessary for very long. This is great news.
The scary part is that the surgery is HUGE... they'll open up my 6 inch scar from the pancreatectomy, and then extend that incision even farther down, so I'll be gutted like a fish. He expects this whole procedure to take 3-4 hours on the operating table. I am scared, but this means at least that I am moving forward, and this could potentially be the last big thing I'll have to deal with in this long and painful illness. It would be awesome to be relatively healthy again by May.
He said that I'll spend the first 24 hours in the recovery room, and then I'll go to a regular room at the hospital for at least a week. He also said that I'll be at home recovering and feeling pretty icky for 3-4 weeks after that.
Now I am trying to round up my ducks and put them all in a row. I am going to open a savings acct. with ATM access next week so that people can pay my bills, and hopefully the big rummage sale will bring in some money to deposit in that account! Heather is just working her little butt off organizing this monster of a project, and we're both recruiting anyone and everyone to help with the sale, donate items, sell raffle tickets, and be there to shop on APRIL 1st!! Don't forget, it's at Odessa's restaurant parking lot (12th and Connecticut). Andy is in Las Vegas right now, but when he returns he's working with Stu at Stu's Midtown tavern about having a benefit fish fry/concert to raise money also. That would be soooo cool.
I am sad that Dr. Stuever is on vacation right now, as I am hesitant to go ahead with all of this with him out of town, but this is what we wanted, so I am doing it. It'll all be done with when he returns from Paris... what a nice vacation!!
If any goddesses are reading this, I need a special goddess pow wow on Monday night... I plan on going to the Brewery for a while to gather some good positive goddess energy prior to the surgery, hope that everyone can be there!
I also need to re-do my CONTACT list of people who want to be in the know when I come out of surgery, etc. so if you want to be on that list, email me your contact info and I'll be sure that Ginger has all of that. My parents are coming in on Wednesday to spend the night and take me in on Thursday morning... I imagine they'll be here for a few days until I am out of the woods, so to speak.
So it's 5 am and I my mind is just reeling with all of the stuff that I need to do before Wednesday, including cleaning my house up, washing sheets for the beds, opening that account, finishing up getting stuff donated for the Pancake Feed for The Arc, telling them at work that I am going to be out for the next 6 weeks, paying bills, worrying about money, taking Emily and her ass problem back to the vet, and seeing as many friends as possible before going in.
This should be an interesting week.
Sunday, March 12, 2006
Easy like Sunday Morning...
This morning began with the beagle perched precariously on my chest, trembling uncontrollably, and the sound of a freight train and outdoor deck furniture blowing around. I jumped up and looked out the window, and it was not good. I grabbed shoes and a flashlight, and my last cigarette and my lighter, and moved the couch out of the way so I could get down into the cellar. About that time, the tornado sirens went off, not to mention numerous emergency vehicle sirens all around.
I sat down in the dark basement with no electricity for about 10 minutes, then emerged to a quiet neighborhood, trees down everywhere, and neighbors walking around assessing the damage. It was pretty extensive. The interesting part is that the buildings and vehicles both to the east and west of me recieved lots of damage, and my property looked pretty much untouched, except for the patio furniture all piled against my front door, and my hammock overturned in the backyard. I guess if there is a god, God decided that I'd had enough shit this year and skipped me.
I never have gotten electricity back... so I napped, spent a few hours at the office taking care of some work, and got home with enough daylight left to quickly pack up my feeding tube, bag, equipment, bandages, pj's, book, lotion, and meds and drove over to Scott and Terri's to spend the night.
Tomorrow is the big appt. with Dr. Delcore, and both Heather and Becky are going with me to kick ass and take names. Yippee!!
I sat down in the dark basement with no electricity for about 10 minutes, then emerged to a quiet neighborhood, trees down everywhere, and neighbors walking around assessing the damage. It was pretty extensive. The interesting part is that the buildings and vehicles both to the east and west of me recieved lots of damage, and my property looked pretty much untouched, except for the patio furniture all piled against my front door, and my hammock overturned in the backyard. I guess if there is a god, God decided that I'd had enough shit this year and skipped me.
I never have gotten electricity back... so I napped, spent a few hours at the office taking care of some work, and got home with enough daylight left to quickly pack up my feeding tube, bag, equipment, bandages, pj's, book, lotion, and meds and drove over to Scott and Terri's to spend the night.
Tomorrow is the big appt. with Dr. Delcore, and both Heather and Becky are going with me to kick ass and take names. Yippee!!
Saturday, March 11, 2006
Hospital entertainment
I just returned home from a couple of days at Lawrence Memorial Hospital. I was having a non-crisis small infection that caused uncontrollable puking and pain, so I went to the ER on Thursday night and they admitted me. Luckily they got it under control right away, and I am back home now to enjoy my Saturday afternoon.
I was thinking, though, about all the ways in which I try to keep myself amused when I am stuck in the hospital. I always try to remember the names of my nurses and aides, and like to do whatever it takes to make them laugh. My friend Heather, after seeing the movie "What the bleep do we know?" had me writing words like "health", "love", "strength" on my IV bags during on trip to LMH, in hopes that the positive connotations would somehow improve the effectiveness of the stuff going into my veins. http://www.whatthebleep.com/crystals/
Yesterday the IV nurse, Patti, came in to change my picc line dressing and was all excited about it because after seeing my IV bags in January, she'd rented the movie and was totally into the concept and thought it was so cool.
Last night I had a couple of cute boy nurses aides in my room "checking my vitals" just as the KU game was ending, and it was a close one. We had a long discussion about what Bill Self is doing wrong. Sometimes I knit when I am at the hospital. Yesterday Scott brought me my knitting, but only brought one needle. I'm not sure how that was supposed to work, but I thought it was funny.
In January at KU Med, I was being transported from my room to an interventional radiology procedure. Just for kicks, I pulled my blanket completely over my head, making myself look like a corpse being transported. The poor transport girl kept giggling and telling me to get that thing off my head, as people were apparently looking at us weird.
Sometimes I steal things. I always ask for extra blankets, extra packages of sponge bath wipes, etc. and usually some of that stuff somehow makes it home with me. I love hospital blankets. Especially since one of my dogs as had an infected anal gland, and god knows she can't stay off the couch, so the blankets end up in constant rotation between couch and laundry to protect my poor couch from her bottom stains. Ick.
Thursday, before I got so dang sick, ( actually it was between puking sessions) T took me to the Humane Society with her,she was looking for a dog. I met a lovely female kitty named "Puddin" who is a snowshoe siamese http://www.geocities.com/Heartland/Meadows/2595/puss_siamese.htm
and she's just as cute as a button. She's 5 or 6 years old, spayed, and very loving.
http://search.petfinder.com/petnote/displaypet.cgi?petid=5677696
This is her. So they called yesterday and said I was approved and could pick her up in a few days if I want. I am still debating it. I don't know how she and the hound dogs will get along.
My energetic friend Heather has decided that a good way to raise some money for my bills would be to have a rummage sale. She made these fliers...
the Kalli Sanders
Benefit Rummage Sale
(If you don’t know Kalli, you’re missing out! She is an amazing, giving, friendly, resourceful, dynamic Lawrence woman. She has been in and out of the hospital too many times to count in the last 10 months).
Spring Cleaning? Purging?
Donate items to raise money to
cover impending bills for Kalli.
We’ll take all kinds of yard sale items!!!
Bikes, kitchen appliances, books, CDs, candles, half used art supplies, chairs, camping gear, antiques, videos, terra cotta pots, magazines, disco balls, yarn, shoes, games, tables, candles, DVDs, mirrors, mugs, holiday decorations, tools, vacuums, pottery…. anything you want to get rid of
(well, except clothing….)
Call Heather Mac (766-2290)
between March 15th-30th
to arrange pick-up / drop-off of
your donations.
The big sale is
Saturday, April 1st at Odessa’s (12th & Connecticut)
She has also started gathering a bunch of cool stuff to have a raffle at the same time, and I told her I would put together all the raffle tickets to make it easier for people to sell. I'm excited about it, I just hope that I can get my surgery scheduled for right after that date, so I can help with the sale.
I was thinking, though, about all the ways in which I try to keep myself amused when I am stuck in the hospital. I always try to remember the names of my nurses and aides, and like to do whatever it takes to make them laugh. My friend Heather, after seeing the movie "What the bleep do we know?" had me writing words like "health", "love", "strength" on my IV bags during on trip to LMH, in hopes that the positive connotations would somehow improve the effectiveness of the stuff going into my veins. http://www.whatthebleep.com/crystals/
Yesterday the IV nurse, Patti, came in to change my picc line dressing and was all excited about it because after seeing my IV bags in January, she'd rented the movie and was totally into the concept and thought it was so cool.
Last night I had a couple of cute boy nurses aides in my room "checking my vitals" just as the KU game was ending, and it was a close one. We had a long discussion about what Bill Self is doing wrong. Sometimes I knit when I am at the hospital. Yesterday Scott brought me my knitting, but only brought one needle. I'm not sure how that was supposed to work, but I thought it was funny.
In January at KU Med, I was being transported from my room to an interventional radiology procedure. Just for kicks, I pulled my blanket completely over my head, making myself look like a corpse being transported. The poor transport girl kept giggling and telling me to get that thing off my head, as people were apparently looking at us weird.
Sometimes I steal things. I always ask for extra blankets, extra packages of sponge bath wipes, etc. and usually some of that stuff somehow makes it home with me. I love hospital blankets. Especially since one of my dogs as had an infected anal gland, and god knows she can't stay off the couch, so the blankets end up in constant rotation between couch and laundry to protect my poor couch from her bottom stains. Ick.
Thursday, before I got so dang sick, ( actually it was between puking sessions) T took me to the Humane Society with her,she was looking for a dog. I met a lovely female kitty named "Puddin" who is a snowshoe siamese http://www.geocities.com/Heartland/Meadows/2595/puss_siamese.htm
and she's just as cute as a button. She's 5 or 6 years old, spayed, and very loving.
http://search.petfinder.com/petnote/displaypet.cgi?petid=5677696
This is her. So they called yesterday and said I was approved and could pick her up in a few days if I want. I am still debating it. I don't know how she and the hound dogs will get along.
My energetic friend Heather has decided that a good way to raise some money for my bills would be to have a rummage sale. She made these fliers...
the Kalli Sanders
Benefit Rummage Sale
(If you don’t know Kalli, you’re missing out! She is an amazing, giving, friendly, resourceful, dynamic Lawrence woman. She has been in and out of the hospital too many times to count in the last 10 months).
Spring Cleaning? Purging?
Donate items to raise money to
cover impending bills for Kalli.
We’ll take all kinds of yard sale items!!!
Bikes, kitchen appliances, books, CDs, candles, half used art supplies, chairs, camping gear, antiques, videos, terra cotta pots, magazines, disco balls, yarn, shoes, games, tables, candles, DVDs, mirrors, mugs, holiday decorations, tools, vacuums, pottery…. anything you want to get rid of
(well, except clothing….)
Call Heather Mac (766-2290)
between March 15th-30th
to arrange pick-up / drop-off of
your donations.
The big sale is
Saturday, April 1st at Odessa’s (12th & Connecticut)
She has also started gathering a bunch of cool stuff to have a raffle at the same time, and I told her I would put together all the raffle tickets to make it easier for people to sell. I'm excited about it, I just hope that I can get my surgery scheduled for right after that date, so I can help with the sale.
Monday Becky is going with me to help advocate (demand) that Dr. Delcore schedule the damn surgery... I am healthy enough for it, I am slowly gaining some weight now that I am back on the TPN, and my lab work keeps coming back really good. I just need a surgeon to get on board. If Delcore doesn't want to do it yet, the docs here in Lawrence want me to see Dr. Reece at St. Lukes. I don't know much about him, but he's highly recommended by Dr. Denning here, and I trust him. I also like the idea of giving St. Luke's shot, since I am so thoroughly sick and tired of the crap at KU. I see a zillion docs, who knows who is a resident and who is a specialist. What team the doc is on? Which department, ? and who to follow up with when something goes wrong? Not to mention the nursing care... it's not to hot most of the time.
https://www.saintlukeshealthsystem.org/app/findadoctor.asp?doc=D1630Y9VM1
Well, not as cute as Dr. Delcore, but I guess he'll do. He told Dr. Denning that he'd be willing to see me on thurs. or fri of this coming week and schedule surgery soon, after hearing about my case. I guess they want to do something like sew the biliary drains from the liver to the small intestine to force them to drain properly, take out my gall bladder, and perhaps do something to my stomach... if not, perhaps they'd put in a J-tube to allow for continued feeding throughout the day, even if I can't eat. We'll see. I just want some progress. I feel like I am spinning my wheels at this point, and nothing is moving forward.
I wonder what kind of blankets they have at St. Lukes.
Monday, March 06, 2006
I'll take THIS path, for now...
I went to a women’s AA meeting tonight in which someone brought up the idea that perhaps there was some strength or wisdom that she might have grown into in her early 20’s, as most of us do a lot of growing at that time, that maybe she somehow missed out on because she was drinking at the time. I can relate to this… I’ve often wondered of myself if there was some period of “growing up” that was covered up by my use of alcohol in difficult situations, in awkward social settings,etc.
I think that a bit of denial is a good thing to have here, as I am trying to reconcile the path that I am on now with the many paths that I could have taken back then. I keep reminding myself that I am where I need to be right now, and there is still plenty of time to continue to grow, in whatever way I choose.
It’s true, though, that new sobriety has it’s moments of doubt… am I doing this right? Is there some secret wisdom or level of comfort that I should have, but don’t? I try really hard not to beat myself up about what might have been. I certainly would not be the person that I am today without the previous struggles with alcohol. And I certainly have learned a lot and grown a lot in the past 10 months with regard to my body and my health.
A lot of this denial line of thinking comes from being reminded by my mom that I only had a 50/50 chance of making it through the big surgery in June, and I came out of that okay. As each week goes by, I get stronger, and yet more impatient… I want to feel PERFECT, now, damn it! I get more antsy to have things be put behind me as I start to feel a little bit better. Unfortunately, I still have those “flat-on-my-ass” days that put me back in the perspective that I still have a lot of healing to do. I feel like I am spinning my wheels a bit right now, as we don’t really have any goals on the books for what happens next, but there is a lot that needs to happen to make everything work right. It’s just a matter of figuring out what next? When? Am I strong enough for the next surgery? Will it also help me to keep weight on? Do I need to go to a different hospital for consultation on all of my GI issues, because what if the surgery to fix the liver drains doesn’t solve the stomach issues? Thankfully I have several important doctor appts. In the next couple of weeks that will hopefully lead to some answers about all of this. I am still on TPN (intravenous nutrition at night) and losing weight at the same time, which doesn’t make a whole lot of sense.
But anyway, despite the frustration, unanswered questions, and endless appointments, I am feeling a lot stronger. I’m working around 20 hours a week, which seems like so little in theory, but in reality it’s the most I can do.
I guess it comes down to a whole lot of little lessons. I’m learning to like being sober and not spending hours in a bar. I enjoy my friends just as much, if not more, when I do feel up to being out and about. It doesn’t bother me to be at bars, which is good… I worried that I’d be uncomfortable or jealous around people drinking. That hasn’t been a problem, and most of my friends who do drink are incredibly respectful and still a hell of a lot of fun to be around. I am lucky in that respect. I love being invited to get out and shop, or go for tea or dinner or a movie, but I also like getting out to old haunts once in a while to touch base with people. Maybe I am catching up on all that growing that should have happened when I was 20 something? I don't know what the right path should have been, but I do sort of know what path I am on right now, and it seems as good a place to be as any.
I think that a bit of denial is a good thing to have here, as I am trying to reconcile the path that I am on now with the many paths that I could have taken back then. I keep reminding myself that I am where I need to be right now, and there is still plenty of time to continue to grow, in whatever way I choose.
It’s true, though, that new sobriety has it’s moments of doubt… am I doing this right? Is there some secret wisdom or level of comfort that I should have, but don’t? I try really hard not to beat myself up about what might have been. I certainly would not be the person that I am today without the previous struggles with alcohol. And I certainly have learned a lot and grown a lot in the past 10 months with regard to my body and my health.
A lot of this denial line of thinking comes from being reminded by my mom that I only had a 50/50 chance of making it through the big surgery in June, and I came out of that okay. As each week goes by, I get stronger, and yet more impatient… I want to feel PERFECT, now, damn it! I get more antsy to have things be put behind me as I start to feel a little bit better. Unfortunately, I still have those “flat-on-my-ass” days that put me back in the perspective that I still have a lot of healing to do. I feel like I am spinning my wheels a bit right now, as we don’t really have any goals on the books for what happens next, but there is a lot that needs to happen to make everything work right. It’s just a matter of figuring out what next? When? Am I strong enough for the next surgery? Will it also help me to keep weight on? Do I need to go to a different hospital for consultation on all of my GI issues, because what if the surgery to fix the liver drains doesn’t solve the stomach issues? Thankfully I have several important doctor appts. In the next couple of weeks that will hopefully lead to some answers about all of this. I am still on TPN (intravenous nutrition at night) and losing weight at the same time, which doesn’t make a whole lot of sense.
But anyway, despite the frustration, unanswered questions, and endless appointments, I am feeling a lot stronger. I’m working around 20 hours a week, which seems like so little in theory, but in reality it’s the most I can do.
I guess it comes down to a whole lot of little lessons. I’m learning to like being sober and not spending hours in a bar. I enjoy my friends just as much, if not more, when I do feel up to being out and about. It doesn’t bother me to be at bars, which is good… I worried that I’d be uncomfortable or jealous around people drinking. That hasn’t been a problem, and most of my friends who do drink are incredibly respectful and still a hell of a lot of fun to be around. I am lucky in that respect. I love being invited to get out and shop, or go for tea or dinner or a movie, but I also like getting out to old haunts once in a while to touch base with people. Maybe I am catching up on all that growing that should have happened when I was 20 something? I don't know what the right path should have been, but I do sort of know what path I am on right now, and it seems as good a place to be as any.
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