Finally! I've got access to one of the Internets!
Okee dokee. We finally got our Internet service back on Friday, but unfortunately I've been too sick to do any updating or anything. I haven't even checked my email in--get this--ELEVEN DAYS. This is a personal slacking record for me. God, when I think back to when I was working...I was lucky to go thirty seconds without glancing at my inbox. Now...I have to say that I am seriously thinking about unplugging everything in my life now (except LJ, of course!) and going back to the good old days when you actually had to pick up a phone or walk over to someone else's house to visit. I am really enjoying NOT having email at the moment :)
Had treatment last Tuesday, which totally kicked my ass. I actually have to say that I usually feel good on treatment days and on the day afterwards (so in this case, I had really good days on Tuesday and Wednesday). All of that is the result of the Decadron they give me in my infusions. But about 48 hours after treatment the steroids wear off and everything goes to hell in a handbasket. I was completely bedbound Thursday, Friday, Saturday and part of today, but I at least managed to get some stuff done around the house today and right now I'm actually feeling adequate. I'm hoping this is the mark of an upswing for the rest of the week.
This round of treatment did bring with it a whole new set of problems that have never happened to me before, and that problem is called peripheral edema. Now every time I go to see Dr. T he's always checking me for evidence of fluid retention, and he pays particular attention to my feet and ankles. I've never had a problem until this week. Like I said, on Wednesday I had a good day and actually got out of the house to do some very enjoyable things (coffee at the coffee shop, met Blake for lunch, spent some time hanging out at the bookstore reading, etc). But around 2 pm or so Wednesday afternoon I noticed that my right leg was very swollen, especially in the foot and ankle area. And I'm talking really, really, REALLY noticeable swelling (seriously, my right foot and ankle looked like Fred Flintstone...no exaggeration there). So I come home, elevate my leg for a little bit and figure that I'll give Judy a call the next day to discuss.
Well...Thursday dawned as probably the worst day that I have ever encountered yet with this disease. I had kept my leg elevated overnight which had successfully managed to reduce the swelling by about 80% or so, but my abdomen...oh, my, god. Unbelievable pain. Just unbelievable. I popped pain meds, I added another fentanyl patch...and I still ended up writhing in bed several times that day just in pain. I know I keep saying this over and over, but I never thought it was possible for the human body to feel such intense pain.
Anyways, the problem was that my abdomen was now bloated beyond all recognition. I could barely breathe, and I literally could not bend at my waist. I'm not talking that oh, gee, it hurt a little bit to bend and that I just didn't want to do it. I literally could...not...bend. There was no room in my abdomen to allow for it. So at this point I'm a little bit panicked with all of this swelling, pain and such, so I call Judy and try to find out what the hell is going on. Is this serious? Should I be in an emergency room somewhere? Should I be dead? Just, what?
So Judy did a bit of investigating and it seems as if my albumin is pretty low (low albumin levels cause fluid to leak out of your vessels and into peripheral tissues). It's not an emergency necessarily, but it is something we've got to address this Tuesday. My abomen stayed swollen like that all the way through yesterday, but today it's back in the right leg again and is beginning to leak into my left leg. So this Tuesday might bring an infusion of albumin (plus my scheduled Aranasp for my hemoglobin) in addition to some diuretic drugs (Lasix, perhaps). In the meantime, I'm stuck with all of this fluid sloshing around in me. The discomfort is, however, receding, but the shortness of breath is proving to be a huge, huge obstacle.
The bottom line in all of this? I will be in a wheelchair this Thursday for the Erasure concert. There is just no way around it. I can't even walk twenty feet without having to sit down and catch my breath. I was really hoping that I would be able to make it through walking and such, but I can't see how this is going to be resolved in time.
I feel very, very strange about this and I don't know why. It's not embarrassment or anything...just...it's just going to be different. I wonder how people will look at me, what kind of treatment I will get, or if people will look at me and think that nothing's wrong. For all practical purposes I'm going to be sitting in this chair without any kind of clue that I'm sick. I still have my hair, I don't LOOK sick...I just can't breathe. I won't be in the chair the whole time, really, either. I'll be able to get in and out of a cab with my own two legs, and most likely I'll be able to get up out of it to walk into a ladies' room on my own. I don't know. I guess I'm a little apprehensive about the whole thing just because...well, because I know there are people out there who require constant use of their wheelchairs, and I wonder what it's like for people who only need partial use of them.
And then there's the planning part of using a wheelchair. I called five hotels in Chicago and none of them had wheelchair accessible rooms available. Now this isn't a problem for me, but geez...what if you were someone who really needed one of those rooms? And then there's the venue (The Park West). Blake called them to find out about their wheelchair accessibility (the seating for the place is "general admission," which means that you show up, wait in line, and they escort you to seats on a first come, first serve basis). Basically, there is no guarantee that I will be able to sit with Blake and Laurie. If we get there early enough, we might get lucky enough to get seats that will allow me to sit in my chair with them. If not, then I guess we fold the chair up, head to our non-wheelchair seats and hope there's space to store the thing. Or...I just sit off by myself in the wheelchair area (with strangers) while Blake and Laurie have regular seats. Lovely, isn't it?
Anyways. We'll see what happens. You can bet I'll be writing about it here no matter what ;)
Let's see...what else is going on? That's the thing...it's like I've got a ton going on in my life, yet nothing at the same time. Been doing a ton of really great reading lately (which I'll write about later...too much to go into here) and just kind of having a good time learning.
Oh, I had another fight with my Dad last week, which resulted in him hanging up on me. This was Thursday, I think. Regardless, he hasn't called me back and man...I feel great about it. And I know him--he won't be calling back anytime soon. He'll do the same thing to me as he did to my aunt and uncle five years ago. He thinks he's the injured party (um, right), so he won't call me because he won't put himself in the position to allow me to hurt him again. Blah, blah, blah. Time will go on, he'll stew more and more and more and over time he'll convince himself that he really was the injured party and he won't stoop to making any move for reconciliation. Which is fine by me, because now I don't have to worry about being the one to break off the relationship. His ridiculous narcissism did it all for me.
What was the fight about, you ask? The whole bankruptcy thing again and how he blamed me for it. Why did I get mad at him? Because he DENIED THAT HE DID IT. Seriously. Even though he admitted it to me on several occasions, even though we had that huge fight four months ago...when it was brought up he still denies that any of it ever happened! And even when I reminded him that he ADMITTED to me that he did it, he STILL denied it!!! And he hung up on me because I refused to believe him. The whole thing was just so completely ludicrous I couldn't even believe it. I knew my father had problems, but this conversation convinced me of just how completely delusional he is. Just...delusional.
So yeah. The situation is sad, but I feel so relieved. So very, very relieved.
Other than that, not much going on other than the mundane. My back is killing me for the time being, so I guess it's time to lie down and get back to some more great reading.
Had treatment last Tuesday, which totally kicked my ass. I actually have to say that I usually feel good on treatment days and on the day afterwards (so in this case, I had really good days on Tuesday and Wednesday). All of that is the result of the Decadron they give me in my infusions. But about 48 hours after treatment the steroids wear off and everything goes to hell in a handbasket. I was completely bedbound Thursday, Friday, Saturday and part of today, but I at least managed to get some stuff done around the house today and right now I'm actually feeling adequate. I'm hoping this is the mark of an upswing for the rest of the week.
This round of treatment did bring with it a whole new set of problems that have never happened to me before, and that problem is called peripheral edema. Now every time I go to see Dr. T he's always checking me for evidence of fluid retention, and he pays particular attention to my feet and ankles. I've never had a problem until this week. Like I said, on Wednesday I had a good day and actually got out of the house to do some very enjoyable things (coffee at the coffee shop, met Blake for lunch, spent some time hanging out at the bookstore reading, etc). But around 2 pm or so Wednesday afternoon I noticed that my right leg was very swollen, especially in the foot and ankle area. And I'm talking really, really, REALLY noticeable swelling (seriously, my right foot and ankle looked like Fred Flintstone...no exaggeration there). So I come home, elevate my leg for a little bit and figure that I'll give Judy a call the next day to discuss.
Well...Thursday dawned as probably the worst day that I have ever encountered yet with this disease. I had kept my leg elevated overnight which had successfully managed to reduce the swelling by about 80% or so, but my abdomen...oh, my, god. Unbelievable pain. Just unbelievable. I popped pain meds, I added another fentanyl patch...and I still ended up writhing in bed several times that day just in pain. I know I keep saying this over and over, but I never thought it was possible for the human body to feel such intense pain.
Anyways, the problem was that my abdomen was now bloated beyond all recognition. I could barely breathe, and I literally could not bend at my waist. I'm not talking that oh, gee, it hurt a little bit to bend and that I just didn't want to do it. I literally could...not...bend. There was no room in my abdomen to allow for it. So at this point I'm a little bit panicked with all of this swelling, pain and such, so I call Judy and try to find out what the hell is going on. Is this serious? Should I be in an emergency room somewhere? Should I be dead? Just, what?
So Judy did a bit of investigating and it seems as if my albumin is pretty low (low albumin levels cause fluid to leak out of your vessels and into peripheral tissues). It's not an emergency necessarily, but it is something we've got to address this Tuesday. My abomen stayed swollen like that all the way through yesterday, but today it's back in the right leg again and is beginning to leak into my left leg. So this Tuesday might bring an infusion of albumin (plus my scheduled Aranasp for my hemoglobin) in addition to some diuretic drugs (Lasix, perhaps). In the meantime, I'm stuck with all of this fluid sloshing around in me. The discomfort is, however, receding, but the shortness of breath is proving to be a huge, huge obstacle.
The bottom line in all of this? I will be in a wheelchair this Thursday for the Erasure concert. There is just no way around it. I can't even walk twenty feet without having to sit down and catch my breath. I was really hoping that I would be able to make it through walking and such, but I can't see how this is going to be resolved in time.
I feel very, very strange about this and I don't know why. It's not embarrassment or anything...just...it's just going to be different. I wonder how people will look at me, what kind of treatment I will get, or if people will look at me and think that nothing's wrong. For all practical purposes I'm going to be sitting in this chair without any kind of clue that I'm sick. I still have my hair, I don't LOOK sick...I just can't breathe. I won't be in the chair the whole time, really, either. I'll be able to get in and out of a cab with my own two legs, and most likely I'll be able to get up out of it to walk into a ladies' room on my own. I don't know. I guess I'm a little apprehensive about the whole thing just because...well, because I know there are people out there who require constant use of their wheelchairs, and I wonder what it's like for people who only need partial use of them.
And then there's the planning part of using a wheelchair. I called five hotels in Chicago and none of them had wheelchair accessible rooms available. Now this isn't a problem for me, but geez...what if you were someone who really needed one of those rooms? And then there's the venue (The Park West). Blake called them to find out about their wheelchair accessibility (the seating for the place is "general admission," which means that you show up, wait in line, and they escort you to seats on a first come, first serve basis). Basically, there is no guarantee that I will be able to sit with Blake and Laurie. If we get there early enough, we might get lucky enough to get seats that will allow me to sit in my chair with them. If not, then I guess we fold the chair up, head to our non-wheelchair seats and hope there's space to store the thing. Or...I just sit off by myself in the wheelchair area (with strangers) while Blake and Laurie have regular seats. Lovely, isn't it?
Anyways. We'll see what happens. You can bet I'll be writing about it here no matter what ;)
Let's see...what else is going on? That's the thing...it's like I've got a ton going on in my life, yet nothing at the same time. Been doing a ton of really great reading lately (which I'll write about later...too much to go into here) and just kind of having a good time learning.
Oh, I had another fight with my Dad last week, which resulted in him hanging up on me. This was Thursday, I think. Regardless, he hasn't called me back and man...I feel great about it. And I know him--he won't be calling back anytime soon. He'll do the same thing to me as he did to my aunt and uncle five years ago. He thinks he's the injured party (um, right), so he won't call me because he won't put himself in the position to allow me to hurt him again. Blah, blah, blah. Time will go on, he'll stew more and more and more and over time he'll convince himself that he really was the injured party and he won't stoop to making any move for reconciliation. Which is fine by me, because now I don't have to worry about being the one to break off the relationship. His ridiculous narcissism did it all for me.
What was the fight about, you ask? The whole bankruptcy thing again and how he blamed me for it. Why did I get mad at him? Because he DENIED THAT HE DID IT. Seriously. Even though he admitted it to me on several occasions, even though we had that huge fight four months ago...when it was brought up he still denies that any of it ever happened! And even when I reminded him that he ADMITTED to me that he did it, he STILL denied it!!! And he hung up on me because I refused to believe him. The whole thing was just so completely ludicrous I couldn't even believe it. I knew my father had problems, but this conversation convinced me of just how completely delusional he is. Just...delusional.
So yeah. The situation is sad, but I feel so relieved. So very, very relieved.
Other than that, not much going on other than the mundane. My back is killing me for the time being, so I guess it's time to lie down and get back to some more great reading.