Monday, June 27, 2011
Tuesday, June 21, 2011
Update
Ok, so whatever was kicking my ass appears to have let up in a BIG way. I woke up this morning feeling 250% better.The only problem is, my dumb ass forgot that diarrhea dehydrates you and you need to replenish electrolytes and such. Must make an emergency run for Gatoraid this afternoon. . .
Saturday, June 18, 2011
Sunday, June 12, 2011
Last night. . .
during one of my many attempts to go to sleep, I closed my eyes and found myself in a Build-a-Bear shop. About 20 goth kids came marching in and sat themselves at desks arranged around the center of the store. Before I could really start thinking about the significance of this, they break out in this juggling routine.
While I try to process this, these two little girls (about 6 years old) appear out of nowhere, one wearing a pink with white polka dot tutu and the other wearing a blue with white polka dot tutu.
Meanwhile, the gothers have adjusted their routine to make it more complex. They're doing passes and circles and all the cool stuff you like to see jugglers do. All while sitting at these desks. And the balls aren't hitting the desks AT ALL.
Bizarre.
Now, I know they gave me drugs for stuff like this at the hospital, but why ruin such fun mini-movies?
While I try to process this, these two little girls (about 6 years old) appear out of nowhere, one wearing a pink with white polka dot tutu and the other wearing a blue with white polka dot tutu.
Meanwhile, the gothers have adjusted their routine to make it more complex. They're doing passes and circles and all the cool stuff you like to see jugglers do. All while sitting at these desks. And the balls aren't hitting the desks AT ALL.
Bizarre.
Now, I know they gave me drugs for stuff like this at the hospital, but why ruin such fun mini-movies?
My Bucket List
(At least) One more taste of fried shrimp from Ocean's Bounty in the Gallery
Never had lobster before. . .
One more cupcake from Tiffany's in the Gallery
Gotta make a video of me feeding the seagulls in Atlantic City for Jen to see so she can see how cool it is and take her wee ones to do it at least once (Her Pumpkin sounds like she would LOVE IT).
Rita's water ice until I'm sick of it
To be continued. . .
PS: For those that want it, my mailing address is 32 Oakmont Drive, New Castle, DE 19720.
Never had lobster before. . .
One more cupcake from Tiffany's in the Gallery
Gotta make a video of me feeding the seagulls in Atlantic City for Jen to see so she can see how cool it is and take her wee ones to do it at least once (Her Pumpkin sounds like she would LOVE IT).
Rita's water ice until I'm sick of it
To be continued. . .
PS: For those that want it, my mailing address is 32 Oakmont Drive, New Castle, DE 19720.
Today. . .
I took the Bestie and Le Beastie to the Build-a-Bear and we got bears made. (When the Bestie heard about the Beastie's bear, she said she wanted one, too. My mom wants one, too. My bears are popular!)
The Bestie had never been to Build-a-Bear before, so we spent like the first hour showing her all the cool stuff they have. She was tickled at the bear underwear and platform shoes, wigs and mp3 players.
The easiest part of the day was picking out bears. Le Beastie got her bear skinny jeans, a wig, sunglasses, some Chucks (that's what they looked like to me, at least), a shirt that I can't think of what it looks like and some socks. That took about two hours to put together.
The Bestie got her bear a cute pink dress, a pink handbag and was gonna get her bear a pair of pink heels until I showed her some cute flats with sequins all over them. She like how they would break up the whole "pink" theme. That took the same two hours.
I snuck off to a corner to record my messages, we got the bears stuffed, named them got our certificates and were done.
I think I did very good, lasting as long as I did. We even went to go get food, but we couldn't stay in the mall to eat it, because I was shivering too bad (stupid me went out without a jacket). So we sat in the car and ate for a bit, but I started getting tired, and since I was the navigator to get us home, we had to leave.
The Beastie wants to come down again and actually get to explore the mall and I don't have a problem with that, as long as we get a wheelchair and I bring a coat.
The Bestie had never been to Build-a-Bear before, so we spent like the first hour showing her all the cool stuff they have. She was tickled at the bear underwear and platform shoes, wigs and mp3 players.
The easiest part of the day was picking out bears. Le Beastie got her bear skinny jeans, a wig, sunglasses, some Chucks (that's what they looked like to me, at least), a shirt that I can't think of what it looks like and some socks. That took about two hours to put together.
The Bestie got her bear a cute pink dress, a pink handbag and was gonna get her bear a pair of pink heels until I showed her some cute flats with sequins all over them. She like how they would break up the whole "pink" theme. That took the same two hours.
I snuck off to a corner to record my messages, we got the bears stuffed, named them got our certificates and were done.
I think I did very good, lasting as long as I did. We even went to go get food, but we couldn't stay in the mall to eat it, because I was shivering too bad (stupid me went out without a jacket). So we sat in the car and ate for a bit, but I started getting tired, and since I was the navigator to get us home, we had to leave.
The Beastie wants to come down again and actually get to explore the mall and I don't have a problem with that, as long as we get a wheelchair and I bring a coat.
Friday, June 10, 2011
Terminal. . .
I always thought when you were terminal, the doctor came into the room with the serious, stern face, sat you down and said something like, "I'm sorry Mrs. Ruffin, we've exhausted all of our resources. You should start making your final arrangements." **cue the dramatic crying and sappy shit**
In reality, it wasn't like that at all.
The doctor DID come into the room with the serious face, but he said that wanted to discuss treatment options. And my options were thus:
Since I'd already had a round of radiation, I could not longer receive any benefit from radiation.
Since I'd already had two major surgeries, any surgeries that I had had a great chance of doing more harm than good, so they were shying away from those.
This left chemotherapy. I found out that every round of chemotherapy that I took not only took out of my future options the drug used (drug A), but also like 3 or 4 other drugs that could have been used (drugs B, C, D and E). This is not really cause for concern, because there are zillions (it seems) of chemo drugs out there, and my doctor had no problem trying every one of them at his disposal, if that was my wish.
BUT (You knew it was coming)
Any drugs that I took from this point on have a 10-15% chance of actually doing something against the cancer.
I thought about that for a bit. 10-15% chance of working versus 100% chance of side effects. I've had my share of chemo side effects (my hair fell out, my nerves on the undersides of my feet felt like they were on fire, tiredness and of course everyone's favorite, nausea.) and really don't want to see what's out there on a 10-15% chance.
Plus, what about Le Beastie? Do I want her to see me that miserable in my last days? We were luck and got a hospice that is willing to take me on as a client even though I can't pay them, so I shouldn't be in TOO much pain at the end.
I've come to the conclusion that those that fight this, even with the odds stacked so high against them, are either gamblers who do good at the casinos pretty often, or people afraid of death.
Me, I'm afraid of pain. No shame in my game.
In reality, it wasn't like that at all.
The doctor DID come into the room with the serious face, but he said that wanted to discuss treatment options. And my options were thus:
Since I'd already had a round of radiation, I could not longer receive any benefit from radiation.
Since I'd already had two major surgeries, any surgeries that I had had a great chance of doing more harm than good, so they were shying away from those.
This left chemotherapy. I found out that every round of chemotherapy that I took not only took out of my future options the drug used (drug A), but also like 3 or 4 other drugs that could have been used (drugs B, C, D and E). This is not really cause for concern, because there are zillions (it seems) of chemo drugs out there, and my doctor had no problem trying every one of them at his disposal, if that was my wish.
BUT (You knew it was coming)
Any drugs that I took from this point on have a 10-15% chance of actually doing something against the cancer.
I thought about that for a bit. 10-15% chance of working versus 100% chance of side effects. I've had my share of chemo side effects (my hair fell out, my nerves on the undersides of my feet felt like they were on fire, tiredness and of course everyone's favorite, nausea.) and really don't want to see what's out there on a 10-15% chance.
Plus, what about Le Beastie? Do I want her to see me that miserable in my last days? We were luck and got a hospice that is willing to take me on as a client even though I can't pay them, so I shouldn't be in TOO much pain at the end.
I've come to the conclusion that those that fight this, even with the odds stacked so high against them, are either gamblers who do good at the casinos pretty often, or people afraid of death.
Me, I'm afraid of pain. No shame in my game.
Wednesday, June 8, 2011
I am. . .
thoroughly convinced there is a Mommy Hell.
And in the middle of that Mommy Hell there is a pit, where the worst Mommies ever are thrown.
Today, I believe I earned my place in that pit when I sat my 12 year old, unsuspecting daughter down and told her that I was going to be dying. The moment when comprehension of what I was saying sunk in, and the look that she got on her face will haunt me for a bit.
I patted her on her shoulder and comforted her, all the stuff you're supposed to do, but I had hurt her, and I had to make it better. So I told her that we would go down to Build-a-Bear and build her any Bear she wanted, outfit, accessories, the works. And for this special bear, I was gonna record my voice, so she would know I was gonna be with her all the time.
That brought my baby's smile back. Yes, I'm still gonna die. But I'm gonna keep her has happy as I can until then.
Cuz that's what Mommies do.
Maybe I'm not in that pit any more. Maybe I'm just at the edge. . .
And in the middle of that Mommy Hell there is a pit, where the worst Mommies ever are thrown.
Today, I believe I earned my place in that pit when I sat my 12 year old, unsuspecting daughter down and told her that I was going to be dying. The moment when comprehension of what I was saying sunk in, and the look that she got on her face will haunt me for a bit.
I patted her on her shoulder and comforted her, all the stuff you're supposed to do, but I had hurt her, and I had to make it better. So I told her that we would go down to Build-a-Bear and build her any Bear she wanted, outfit, accessories, the works. And for this special bear, I was gonna record my voice, so she would know I was gonna be with her all the time.
That brought my baby's smile back. Yes, I'm still gonna die. But I'm gonna keep her has happy as I can until then.
Cuz that's what Mommies do.
Maybe I'm not in that pit any more. Maybe I'm just at the edge. . .
Tuesday, June 7, 2011
Wednesday, May 25, 2011
Le Beastie is fascinated with my body temperature these days.
Today she discovered that my hands were warm, but my arms were cold. She asked why. I told her it was probably just because I was sick. She took my hand and rubbed it on her cheek and said, "I rub my not sicky-ness on you."
What did I do right to get her?
Today she discovered that my hands were warm, but my arms were cold. She asked why. I told her it was probably just because I was sick. She took my hand and rubbed it on her cheek and said, "I rub my not sicky-ness on you."
What did I do right to get her?
Tuesday, May 24, 2011
I think I've decided
to not turn the Ladies' Room into Cancer central.
All cancer related posting shall be done here.
So, what's been up with me, you might ask?
Last week (on the 11th), I went to the ER for abdominal pain and vomiting. The doctor took a CT scan of my belly to see if there was any blockage causing the pain. He didn't find any blockage, but he did find cancer. And that's how I found out my cancer was out of remission.
They gave me drugs and drew blood and did all those emergency room things they do. At the end of 8 or so hours, I felt better. I asked the doctor what could have caused the pain. He gave the generic "it could have been caused by any of a number of factors" and told me to follow up with my general practitioner.
My general practitioner (who is actually my GYN) was booked until Monday (ER visit was on Wednesday), so I took that appointment. But Friday, I was back. Throwing up, abdominal pain. Sound familiar?
Got treated, same advice. Went to my doctor's on Monday, told him what was going on. I wanted to know what was causing this pain, everyone is telling me to do something about the cancer.
I'm moving in about 2 weeks, it really doesn't make any sense (to me) to start any kind of chemo regimen just to have to get to Delaware, find a doctor, start up a regimen there and try to get back on schedule. No one was making things out to be that serious.
I tried to call my doctor in Atlanta, left voicemails aplenty, no responses as of yet. Oh well, percocets are working good.
Friday (the 20th), I ended up going to the ER for EXTREME pain (and anyone who knows me knows that me using extreme in regards to pain is significant. I seem to have a healthy pain tolerance) and vomiting. They admitted me because I was in pretty bad shape (my hemoglobin was low as was my magnesium and potassium. Oh, and I had a UTI.). Weekend in the hospital, woot!
The doctor finally told me that the pain was being caused by the cancer and I needed to do something about it muy pronto. Another doctor chastised me for taking percocets, because two of the side effects or perkies are vomiting and headaches. Excuse me!! I don't keep a list of side effects for drugs in my head! It says take for pain, I was in pain.
They decided to release me on Sunday at around 3. I signed the release papers, called my ride, got my stuff packed and was ready to go. My ride got there around 4:30ish. I called the nurses station and told them I was ready to go. They forgot about me for an hour or so. (I kinda figured they had, but I was being nice and giving them the benefit of the doubt.)
When I called them again, they came for me, but my ride had gone to the grocery store to pick some stuff up. Short story long, by time I hooked up with my ride, the pharmacies in town were closed for the night.
The next morning, I was first in line for the pharmacy. I got most of the stuff I was prescribed, but I couldn't get the pain patches the doctor prescribed for me because the insurance company would not let me get them without prior approval. I called the hospital to tell them this, and they tell me that the doctors do not have any contact with patients after they are released from the hospital. I informed the nurse that that was all well and good, but the doctor had prescribed something for me that I could not get but desperately needed. She said she would talk to the doctor and "get back to me." (Still waiting on that.) In the meantime, I am rationing my pain pills to make it through the week. I just gotta make it to the 31st. And then it's moving day!!
All cancer related posting shall be done here.
So, what's been up with me, you might ask?
Last week (on the 11th), I went to the ER for abdominal pain and vomiting. The doctor took a CT scan of my belly to see if there was any blockage causing the pain. He didn't find any blockage, but he did find cancer. And that's how I found out my cancer was out of remission.
They gave me drugs and drew blood and did all those emergency room things they do. At the end of 8 or so hours, I felt better. I asked the doctor what could have caused the pain. He gave the generic "it could have been caused by any of a number of factors" and told me to follow up with my general practitioner.
My general practitioner (who is actually my GYN) was booked until Monday (ER visit was on Wednesday), so I took that appointment. But Friday, I was back. Throwing up, abdominal pain. Sound familiar?
Got treated, same advice. Went to my doctor's on Monday, told him what was going on. I wanted to know what was causing this pain, everyone is telling me to do something about the cancer.
I'm moving in about 2 weeks, it really doesn't make any sense (to me) to start any kind of chemo regimen just to have to get to Delaware, find a doctor, start up a regimen there and try to get back on schedule. No one was making things out to be that serious.
I tried to call my doctor in Atlanta, left voicemails aplenty, no responses as of yet. Oh well, percocets are working good.
Friday (the 20th), I ended up going to the ER for EXTREME pain (and anyone who knows me knows that me using extreme in regards to pain is significant. I seem to have a healthy pain tolerance) and vomiting. They admitted me because I was in pretty bad shape (my hemoglobin was low as was my magnesium and potassium. Oh, and I had a UTI.). Weekend in the hospital, woot!
The doctor finally told me that the pain was being caused by the cancer and I needed to do something about it muy pronto. Another doctor chastised me for taking percocets, because two of the side effects or perkies are vomiting and headaches. Excuse me!! I don't keep a list of side effects for drugs in my head! It says take for pain, I was in pain.
They decided to release me on Sunday at around 3. I signed the release papers, called my ride, got my stuff packed and was ready to go. My ride got there around 4:30ish. I called the nurses station and told them I was ready to go. They forgot about me for an hour or so. (I kinda figured they had, but I was being nice and giving them the benefit of the doubt.)
When I called them again, they came for me, but my ride had gone to the grocery store to pick some stuff up. Short story long, by time I hooked up with my ride, the pharmacies in town were closed for the night.
The next morning, I was first in line for the pharmacy. I got most of the stuff I was prescribed, but I couldn't get the pain patches the doctor prescribed for me because the insurance company would not let me get them without prior approval. I called the hospital to tell them this, and they tell me that the doctors do not have any contact with patients after they are released from the hospital. I informed the nurse that that was all well and good, but the doctor had prescribed something for me that I could not get but desperately needed. She said she would talk to the doctor and "get back to me." (Still waiting on that.) In the meantime, I am rationing my pain pills to make it through the week. I just gotta make it to the 31st. And then it's moving day!!
Friday, April 29, 2011
**sigh**
My stomach hurts, I'm out of money, one of my bags sprung a leak and my "perfect" plan for escaping Valdosta is hitting roadblocks. . .
I hate my life right now. . .
I hate my life right now. . .
Wednesday, April 27, 2011
I swear. . .
if I could rip the skin off my stomach and replace it with like a glass display case, or something NON FUCKING ITCHY, I would so very do it right now. . .
Friday, April 22, 2011
Saturday, April 16, 2011
**sigh**
My nutritionist has me on this regimen where he wants me to eat "six small meals a day." Hell, I have a problem eating TWO meals a day, AND he's checking what I eat for nutritional value! FUCK!
Friday, April 15, 2011
My surgery. . . (A long version)
was scheduled for Wednesday, March 16 at 1pm. Because of the distance between Valdosta and Atlanta, my uncle and I had to leave my apartment at about 6 to get to Atlanta in time for all the pre-op stuff. I did my day before fasting and was quite ready for the surgery to get on so I could eat when I woke up. (Hey, this is gonna be just like last time, right? I know how this goes!)
We got to the hospital at 10. All the check-in stuff was done and I was ready to go by 11 or so. One comes and goes. And two. I fell asleep and woke up. Now it's like 5 or so. They moved me up to the pre-op area (which was actually the POST-op room) and I got to wait some more. Finally, around 7 or so, my doctor comes in and informs me that the surgery was going to be moved to the next morning at 7:30. His son had broken his arm and he had to go handle that. At first, I was kinda annoyed, but then I realized I totally would have blown my job off for Le Beastie, so I calmed down.
I got put up in a room in "the Penthouse" and they were able to scrounge up some lovely clear liquids to feed me (I got a popsicle, yay!). The next morning, they wake me up and get me back down to the pre-op room (still the post-op room) at about 7. The doctor comes in about 8ish. (I could make jokes about CP time, but he's white!! What's up with that?!?!?) I don't remember if I saw the operating room where the surgery was done, but I do know I didn't see much of anything for a little while.
The first thing I remember was opening my eyes and instantly realizing I was in the wrong room. The room I had left had the bed facing brown walls (I'm almost positive), this one had the bed facing white. I kinda jumped, or moved my hand and I heard a voice say "She's trying to take out the tubes! We have to restrain her." There was a guy yelling at me. Something about a breathing tube and "You've had major surgery." I went back to sleep.
The next thing I remember is a woman coming in. I was sleep when she came in, but I quickly semi-woke up when she started messing with my breathing tube. Apparently, it wasn't far enough down my throat. She's adjusting, I'm choking. A good time was had by. . .well, I hope she had a good time, because I didn't. Back to sleep.
Being awake with a breathing tube in is a horrendous experience. I hope I never have to go through it again. I gag on some of the larger pills I take, so we KNOW I was not happy with that tube. What if I threw up? Would they know I was choking?
Well, since I was awake, might as well get this damn tube taken out. I somehow caught someone's attention and got them to realize I wanted to talk (ha!) -- err. ..communicate. So they got me the picture page where I could point out what I wanted to say. But my eyes wouldn't focus (a combination of not wearing my glasses and being sedated), so I couldn't see them tiny ass pictures. Ok, gimme a pen then.
I don't remember all that I said, but I'm pretty sure the first thing was something about why I had a tube shoved down my throat and when it was coming out. All I could get in reply was general "soothe the crazy tied up lady" talk, no "we're taking it out now!" I bugged them so much, one nurse got mad and said "You need to stop worrying about writing and start worrying about breathing," as if I was not breathing right on purpose so I could have a tube in my throat.
Around this time, I remembered that I hadn't contacted family and friends to let them know I was awake and (relatively) ok. I motioned for the pen to write this and was told no more writing. So I had to mouth the words until the nurse got what I was saying and told me my family had been notified that I was fine (by whose definition?!). Shortly after that, the tube came out. If I coulda jumped out that bed and celebrated, I would have! But I couldn't, so I stuck with sleeping.
I woke up one time and asked why I was in the ICU (I had discovered that was where I was). I was told that I'd "had major surgery" and I was there to recover. I'm sitting there confused, because all the doctor was supposed to be doing was going in and scooping out what cancer he saw. What's so "major" about that? Oh well, he'll be by to see me soon. He always comes shortly after I wake up.
I get the nurse to give me my phone, get it plugged up so it can charge and start sending out my texts. I noticed that I had like 8 texts. Dang, people! Give the anesthetic some time to wear off! And then I noticed something. When I woke up, it was daylight outside and it was around mid-day, so I figured it was still Thursday. Nope. It was Friday. I'd been pretty much out of it for almost a full day. Now I understood the texts. Now I started to worry a little. Last time, I was awake by 10pm from my surgery. What the hell was going on?
When I blew up at an intern on Saturday, because nobody would tell me anything about this "major surgery" that I'd had, except that I'd had it, word got passed back to my doctor, who finally made an appearance. I was VERY mad at him, because he hadn't come to see me since the surgery (he'd called one morning at 1am to check on how I was doing, but he didn't talk to ME).
He told me that during the surgery, I started bleeding heavily. I started bleeding so heavily, that they needed 11 units of blood before they could get the bleeding under control. It was also decided that my bladder and rectum could not be salvaged, so they were removed. lol He actually thought I was mad about loving them (I had been warned that this was a possibility).
I told him, no I wasn't mad about that. I told him I WAS mad about the fact that no one thought to call my family and let them know what had happened, so for a day and a half, they thought I'd died (my uncle tried calling the hospital to find out my condition. The first time he called, he was told there wasn't a patient by my name at the hospital. The second time, they told him I was "stable." My dad didn't sleep for like 2 days, he was so worried.). I told him I was mad that I had to cuss and act a fool to find out what had happened to me. THAT was stuff I was mad about. Having to go to the bathroom in Ziploc bags was not a big deal (at the time).
After he left, a nurse I was cool with told me that there was some kind of control thing going on between the ICU doctors and the "doctor" doctors. While I understand that if I'm in the ICU, the ICU doctors should be able to do their stuff without interference from my doctor, it would have been nice if one of those ICU doctors would have seen fit to inform me, the patient, what was going on BEFORE I turned into a basket case.
But whatevs. I got to spend the weekend in the ICU getting used to my brand new ostomies (the bags used to collect bodily waste) and stomas (where the waste exits the body). I went upstairs to continue my healing. While I was up there, they discovered I had an irregular heartbeat and couldn't keep anything down. Oh, and there was a problem with my blood pressure, too.
I had two IV lines in my neck, one in my LifePort and a couple in my arm. I was taking pills for depression, anti-nausea and I forget what else. I started having hallucinations (which were fun). I did it their way for a couple of days and then started refusing some of the non-essential drugs (I hate taking drugs). I was finally able to keep my liquid meals down, but they were slow in moving me up the food chain (I wanted solids and baked chicken, dammit!!).
About a week before I came home, I started getting these fevers. They'd get the fever down, it'd shoot right back up. At this point, the fevers and that I hadn't had solid food were the only things stopping me from going home! The solid food thing was easily resolved (mmmmmm. . . baked chicken. . .), the fever thing, not so easily. After taking back what felt like at least 2 of the 11 units of blood I received, it was discovered that my LifePort was infected. It had to come out.
LifePort got taken out on Thursday. Now to go 48 hours without a fever. There was talk of me getting out on Monday! Finally!
And then on Saturday, it was discovered that I had a MRSA infection. I wanted to scream.
On Sunday, it was decided that I could probably go home on Monday with oral antibiotics. I was trying to get something a bit more definite, so I could tell my mother to go ahead and rent the car she'd need to come get me, but they wouldn't commit to letting me go until Monday, when the doctor actually said the words.
Of course, no rental agency in town had cars.
So now I'm stuck begging to spend another night in a place I would have sprinted out of earlier. I spent the whole night thinking "Watch, I'm gonna spike a fever and have to spend another two days in here. . ." Well, I didn't. My mom had a car on Tuesday, and I was finally getting out! Well, after we figured out where my mom got lost in Atlanta and got her directions to the hospital. . .
We got to the hospital at 10. All the check-in stuff was done and I was ready to go by 11 or so. One comes and goes. And two. I fell asleep and woke up. Now it's like 5 or so. They moved me up to the pre-op area (which was actually the POST-op room) and I got to wait some more. Finally, around 7 or so, my doctor comes in and informs me that the surgery was going to be moved to the next morning at 7:30. His son had broken his arm and he had to go handle that. At first, I was kinda annoyed, but then I realized I totally would have blown my job off for Le Beastie, so I calmed down.
I got put up in a room in "the Penthouse" and they were able to scrounge up some lovely clear liquids to feed me (I got a popsicle, yay!). The next morning, they wake me up and get me back down to the pre-op room (still the post-op room) at about 7. The doctor comes in about 8ish. (I could make jokes about CP time, but he's white!! What's up with that?!?!?) I don't remember if I saw the operating room where the surgery was done, but I do know I didn't see much of anything for a little while.
The first thing I remember was opening my eyes and instantly realizing I was in the wrong room. The room I had left had the bed facing brown walls (I'm almost positive), this one had the bed facing white. I kinda jumped, or moved my hand and I heard a voice say "She's trying to take out the tubes! We have to restrain her." There was a guy yelling at me. Something about a breathing tube and "You've had major surgery." I went back to sleep.
The next thing I remember is a woman coming in. I was sleep when she came in, but I quickly semi-woke up when she started messing with my breathing tube. Apparently, it wasn't far enough down my throat. She's adjusting, I'm choking. A good time was had by. . .well, I hope she had a good time, because I didn't. Back to sleep.
Being awake with a breathing tube in is a horrendous experience. I hope I never have to go through it again. I gag on some of the larger pills I take, so we KNOW I was not happy with that tube. What if I threw up? Would they know I was choking?
Well, since I was awake, might as well get this damn tube taken out. I somehow caught someone's attention and got them to realize I wanted to talk (ha!) -- err. ..communicate. So they got me the picture page where I could point out what I wanted to say. But my eyes wouldn't focus (a combination of not wearing my glasses and being sedated), so I couldn't see them tiny ass pictures. Ok, gimme a pen then.
I don't remember all that I said, but I'm pretty sure the first thing was something about why I had a tube shoved down my throat and when it was coming out. All I could get in reply was general "soothe the crazy tied up lady" talk, no "we're taking it out now!" I bugged them so much, one nurse got mad and said "You need to stop worrying about writing and start worrying about breathing," as if I was not breathing right on purpose so I could have a tube in my throat.
Around this time, I remembered that I hadn't contacted family and friends to let them know I was awake and (relatively) ok. I motioned for the pen to write this and was told no more writing. So I had to mouth the words until the nurse got what I was saying and told me my family had been notified that I was fine (by whose definition?!). Shortly after that, the tube came out. If I coulda jumped out that bed and celebrated, I would have! But I couldn't, so I stuck with sleeping.
I woke up one time and asked why I was in the ICU (I had discovered that was where I was). I was told that I'd "had major surgery" and I was there to recover. I'm sitting there confused, because all the doctor was supposed to be doing was going in and scooping out what cancer he saw. What's so "major" about that? Oh well, he'll be by to see me soon. He always comes shortly after I wake up.
I get the nurse to give me my phone, get it plugged up so it can charge and start sending out my texts. I noticed that I had like 8 texts. Dang, people! Give the anesthetic some time to wear off! And then I noticed something. When I woke up, it was daylight outside and it was around mid-day, so I figured it was still Thursday. Nope. It was Friday. I'd been pretty much out of it for almost a full day. Now I understood the texts. Now I started to worry a little. Last time, I was awake by 10pm from my surgery. What the hell was going on?
When I blew up at an intern on Saturday, because nobody would tell me anything about this "major surgery" that I'd had, except that I'd had it, word got passed back to my doctor, who finally made an appearance. I was VERY mad at him, because he hadn't come to see me since the surgery (he'd called one morning at 1am to check on how I was doing, but he didn't talk to ME).
He told me that during the surgery, I started bleeding heavily. I started bleeding so heavily, that they needed 11 units of blood before they could get the bleeding under control. It was also decided that my bladder and rectum could not be salvaged, so they were removed. lol He actually thought I was mad about loving them (I had been warned that this was a possibility).
I told him, no I wasn't mad about that. I told him I WAS mad about the fact that no one thought to call my family and let them know what had happened, so for a day and a half, they thought I'd died (my uncle tried calling the hospital to find out my condition. The first time he called, he was told there wasn't a patient by my name at the hospital. The second time, they told him I was "stable." My dad didn't sleep for like 2 days, he was so worried.). I told him I was mad that I had to cuss and act a fool to find out what had happened to me. THAT was stuff I was mad about. Having to go to the bathroom in Ziploc bags was not a big deal (at the time).
After he left, a nurse I was cool with told me that there was some kind of control thing going on between the ICU doctors and the "doctor" doctors. While I understand that if I'm in the ICU, the ICU doctors should be able to do their stuff without interference from my doctor, it would have been nice if one of those ICU doctors would have seen fit to inform me, the patient, what was going on BEFORE I turned into a basket case.
But whatevs. I got to spend the weekend in the ICU getting used to my brand new ostomies (the bags used to collect bodily waste) and stomas (where the waste exits the body). I went upstairs to continue my healing. While I was up there, they discovered I had an irregular heartbeat and couldn't keep anything down. Oh, and there was a problem with my blood pressure, too.
I had two IV lines in my neck, one in my LifePort and a couple in my arm. I was taking pills for depression, anti-nausea and I forget what else. I started having hallucinations (which were fun). I did it their way for a couple of days and then started refusing some of the non-essential drugs (I hate taking drugs). I was finally able to keep my liquid meals down, but they were slow in moving me up the food chain (I wanted solids and baked chicken, dammit!!).
About a week before I came home, I started getting these fevers. They'd get the fever down, it'd shoot right back up. At this point, the fevers and that I hadn't had solid food were the only things stopping me from going home! The solid food thing was easily resolved (mmmmmm. . . baked chicken. . .), the fever thing, not so easily. After taking back what felt like at least 2 of the 11 units of blood I received, it was discovered that my LifePort was infected. It had to come out.
LifePort got taken out on Thursday. Now to go 48 hours without a fever. There was talk of me getting out on Monday! Finally!
And then on Saturday, it was discovered that I had a MRSA infection. I wanted to scream.
On Sunday, it was decided that I could probably go home on Monday with oral antibiotics. I was trying to get something a bit more definite, so I could tell my mother to go ahead and rent the car she'd need to come get me, but they wouldn't commit to letting me go until Monday, when the doctor actually said the words.
Of course, no rental agency in town had cars.
So now I'm stuck begging to spend another night in a place I would have sprinted out of earlier. I spent the whole night thinking "Watch, I'm gonna spike a fever and have to spend another two days in here. . ." Well, I didn't. My mom had a car on Tuesday, and I was finally getting out! Well, after we figured out where my mom got lost in Atlanta and got her directions to the hospital. . .
Saturday, April 9, 2011
I'm lost. . .
I haven't posted in a bit because I was in the hospital for 2 1/2 weeks after the surgery and since I got out, I've been adjusting.
Quick update:
The surgery didn't go very well. (I almost died.) The doctor was able to get all the cancer he saw out, but he also had to remove my bladder and my rectum. So now I have ostomy bags.
I'm still getting used to them and really don't like leaving the house (What if there's a problem? What if someone smells me?), but I'm hoping that gets better.
**sigh**
I just want my life back. . .
Quick update:
The surgery didn't go very well. (I almost died.) The doctor was able to get all the cancer he saw out, but he also had to remove my bladder and my rectum. So now I have ostomy bags.
I'm still getting used to them and really don't like leaving the house (What if there's a problem? What if someone smells me?), but I'm hoping that gets better.
**sigh**
I just want my life back. . .
Sunday, March 13, 2011
Maybe going to the hospital was good for something after all. . .
I just noticed my sciatic nerve problem seems to have disappeared. (Yay!)
Hmm. . . About the hospital visit. It wasn't as easy as a fever this time.
(I think I'll just use the read more thingie when going into disgusting detail. . .)
Hmm. . . About the hospital visit. It wasn't as easy as a fever this time.
(I think I'll just use the read more thingie when going into disgusting detail. . .)
Saturday, March 12, 2011
I want. . .
to be pain free.
My urethra feels like it's make out of the stiffest, most unbending bamboo, which makes sitting down torture until I'm lucky enough to find a comfy position.
Also complicating that sitting thing is my sciatic nerve apparently feeling I'm a bit. . .hefty.
My urethra also feels like it's some kind of ring of fire when I go to the bathroom. I'm convinced I pee lighter fluid. It's cry-inducing painful. Unfortunately, people panic when you cry while going to the bathroom (especially 12 year old Beasties).
I've got all these wonderful drugs that don't do anything. What's the big fucking whoop about Oxycodone (or whatever it's called)? All that shit does is put me to sleep. Putting me to sleep is not alleviating my pain. It's just moving it to a later time slot. I want that shit GONE.
I can find relief from all my pains (except the peeing thing) when I lay down, but all that does is put me to sleep, because I can't hold books over my head for long and I suck at reading sideways.
Part of me is looking forward to the surgery on Wednesday, because when you don't have a bladder, you don't pee out your urethra, though I guess that doesn't take care of the bamboo problem. Maybe I can get them to just remove the damn thing entirely. . .
My urethra feels like it's make out of the stiffest, most unbending bamboo, which makes sitting down torture until I'm lucky enough to find a comfy position.
Also complicating that sitting thing is my sciatic nerve apparently feeling I'm a bit. . .hefty.
My urethra also feels like it's some kind of ring of fire when I go to the bathroom. I'm convinced I pee lighter fluid. It's cry-inducing painful. Unfortunately, people panic when you cry while going to the bathroom (especially 12 year old Beasties).
I've got all these wonderful drugs that don't do anything. What's the big fucking whoop about Oxycodone (or whatever it's called)? All that shit does is put me to sleep. Putting me to sleep is not alleviating my pain. It's just moving it to a later time slot. I want that shit GONE.
I can find relief from all my pains (except the peeing thing) when I lay down, but all that does is put me to sleep, because I can't hold books over my head for long and I suck at reading sideways.
Part of me is looking forward to the surgery on Wednesday, because when you don't have a bladder, you don't pee out your urethra, though I guess that doesn't take care of the bamboo problem. Maybe I can get them to just remove the damn thing entirely. . .
Friday, March 11, 2011
So I got sick at home yesterday. . .
(I'm noticing a trend)
Threw up, had an equal and opposite reaction (but probably not the one you're thinking and definitely one I'm not going into here) and developed a fever. When I discovered said fever, it was 101.9.
About 10 minutes later, it was 103.4. That was the point when I started making my way to the emergency.
Got to the ER at about 5pm-ish.
Got out at midnight.
During that time, I had 50 bazillion vials of blood drawn, all kinds of fluids and antibiotics pumped into me and no food given to me until I snagged a (thin) slice of roast beef and a (also thin) slice of turkey off some sandwich they dug up just before my midnight deadline. (I had planned on grilled cheese sandwiches for dinner and I REALLY wanted those damn sandwiches. But alas, my consumption of them was not meant to be. . .)
Why the midnight deadline? Because I had a procedure scheduled for this morning at 8am. For this procedure, I'm not allowed to eat after midnight, no drinks, no medicines, nothing. So after we got out of the hospital, and I took Le Beastie to McD's to get her something to eat, I had to drive the twenty minutes home smelling the delicious smells of grilled chicken wraps (plain, thank you) and fries stinking up my car.
It was torture.
Got to bed about 1 (had to clean up the mess I made pre-ER visit) and was up and back at the hospital at 8. Sluggish, groggy and pissed, cuz I was hungry.
Everything was going good until I got that needle (they had to inject radioactive dye into my bloodstream). Well, I got dizzy and apparently passed out (though I have no memory of such happenings). I came to just at the nurse who ran the machinery came back into the trailer (it's like an 18-wheeler trailer type deal) with like 4 nurses. So now it's the nurse, the 4 OTHER nurses and the guy of undetermined job status who stuck me with the needle. Exciting times. . .
I, of course, hate all this attention, so while they're all asking me the same questions ("How do you feel? Are you dizzy? Do you want to go to the ER?"), I just want them to leave me alone so I can get this procedure done and eat.
I finally sorta convinced them I was ok. (Three nurses left, but one stayed behind "just in case.") The procedure seems to take twice as long today. Was v. v. annoying.
Procedure gets done and the nurse running the machinery turns into this REALLY BIG mother hen. She's hovering over me. Got me three packs of graham crackers, two little containers of orange juice and a mini-bottle of Gatoraid. Offered to call a Med-trans van to get me home. I thought she was gonna break out the straps and tie me to the chair, but I finally convinced her that really, really, really, I was OK.
Now I'm home, and I didn't have the post procedure McD's I usually have, and I'm tired and I haven't had my medication today.
PLEASE LET MY WEEK OF EXCITEMENT BE OVER!!
Threw up, had an equal and opposite reaction (but probably not the one you're thinking and definitely one I'm not going into here) and developed a fever. When I discovered said fever, it was 101.9.
About 10 minutes later, it was 103.4. That was the point when I started making my way to the emergency.
Got to the ER at about 5pm-ish.
Got out at midnight.
During that time, I had 50 bazillion vials of blood drawn, all kinds of fluids and antibiotics pumped into me and no food given to me until I snagged a (thin) slice of roast beef and a (also thin) slice of turkey off some sandwich they dug up just before my midnight deadline. (I had planned on grilled cheese sandwiches for dinner and I REALLY wanted those damn sandwiches. But alas, my consumption of them was not meant to be. . .)
Why the midnight deadline? Because I had a procedure scheduled for this morning at 8am. For this procedure, I'm not allowed to eat after midnight, no drinks, no medicines, nothing. So after we got out of the hospital, and I took Le Beastie to McD's to get her something to eat, I had to drive the twenty minutes home smelling the delicious smells of grilled chicken wraps (plain, thank you) and fries stinking up my car.
It was torture.
Got to bed about 1 (had to clean up the mess I made pre-ER visit) and was up and back at the hospital at 8. Sluggish, groggy and pissed, cuz I was hungry.
Everything was going good until I got that needle (they had to inject radioactive dye into my bloodstream). Well, I got dizzy and apparently passed out (though I have no memory of such happenings). I came to just at the nurse who ran the machinery came back into the trailer (it's like an 18-wheeler trailer type deal) with like 4 nurses. So now it's the nurse, the 4 OTHER nurses and the guy of undetermined job status who stuck me with the needle. Exciting times. . .
I, of course, hate all this attention, so while they're all asking me the same questions ("How do you feel? Are you dizzy? Do you want to go to the ER?"), I just want them to leave me alone so I can get this procedure done and eat.
I finally sorta convinced them I was ok. (Three nurses left, but one stayed behind "just in case.") The procedure seems to take twice as long today. Was v. v. annoying.
Procedure gets done and the nurse running the machinery turns into this REALLY BIG mother hen. She's hovering over me. Got me three packs of graham crackers, two little containers of orange juice and a mini-bottle of Gatoraid. Offered to call a Med-trans van to get me home. I thought she was gonna break out the straps and tie me to the chair, but I finally convinced her that really, really, really, I was OK.
Now I'm home, and I didn't have the post procedure McD's I usually have, and I'm tired and I haven't had my medication today.
PLEASE LET MY WEEK OF EXCITEMENT BE OVER!!
Thursday, March 10, 2011
Let's be real for a moment, mkay?
I find it funny that I can't talk frankly with my friends about the fact that I'm dying of cancer. They say all the things friends are supposed to say, "Don't talk like that!" "You gotta stay positive!"
It's hard to stay positive when go through 4 pads on a GOOD day and who knows how much toilet paper.
(It gets worse. If you like cherry cobbler, stop reading now!)
It's hard to stay positive when go through 4 pads on a GOOD day and who knows how much toilet paper.
(It gets worse. If you like cherry cobbler, stop reading now!)
Wednesday, March 9, 2011
So I got sick at work on Sunday. . .
They paged my oncologist and he told me to come in to the cancer center on Monday for a checkup. I really wasn't expecting (translation: REALLY didn't want) the whole lab work thing, but I guess it's a good thing they did it.
Turns out my hemoglobin was "critically low." (It was like a 7 or something.)
Yay me. Got to spend all day Monday and half of Tuesday getting three units of primo A+ pumped into me. (I slept through all of it and a good 5 hours afterwards.)
Waiting for all that blood to kick in so I can stop sleeping so damn much. . .
Turns out my hemoglobin was "critically low." (It was like a 7 or something.)
Yay me. Got to spend all day Monday and half of Tuesday getting three units of primo A+ pumped into me. (I slept through all of it and a good 5 hours afterwards.)
Waiting for all that blood to kick in so I can stop sleeping so damn much. . .
Sunday, February 27, 2011
So. . .
I dropped off of Facebook for a bit.
I'm not going to go into why and I'm not back yet, just posting an update so people know what's going on with "the cancer thing."
I went to the doctor on the 15. He wasn't as "not himself" as he was last time I went, but yet and still, the news was still not good.
Turns out the chemotherapy isn't working. I have another surgery scheduled for the 16th of March. I think they wanted to do the surgery on the 16th of February (they talked about admitting me to the hospital straight from the doctor's office), but I put my foot down. I didn't have anyone to take care of Le Beastie and I was in a rental that I hadn't budgeted to have indefinitely.
After this surgery, I will be taking a month off of work to heal, going back to work about early/mid April and quitting my job to move back to Delaware at the end of May.
And. . .that's my update for today.
I'm not going to go into why and I'm not back yet, just posting an update so people know what's going on with "the cancer thing."
I went to the doctor on the 15. He wasn't as "not himself" as he was last time I went, but yet and still, the news was still not good.
Turns out the chemotherapy isn't working. I have another surgery scheduled for the 16th of March. I think they wanted to do the surgery on the 16th of February (they talked about admitting me to the hospital straight from the doctor's office), but I put my foot down. I didn't have anyone to take care of Le Beastie and I was in a rental that I hadn't budgeted to have indefinitely.
After this surgery, I will be taking a month off of work to heal, going back to work about early/mid April and quitting my job to move back to Delaware at the end of May.
And. . .that's my update for today.
Thursday, February 3, 2011
So. . .I'm taking a break from Facebook. . .
It seems like every time I turn around, someone is announcing they're pregnant. I'm happy for them. . .really. But at the same time, I'm enraged, because I won't be getting pregnant. I won't be having any more kids. And it wasn't even my choice.
I found out by accident that radiation had killed my ovaries. A quick off-hand comment by some doctor that I never saw again and I'm sitting stunned in the office.
I never meant for my daughter to be an only child.
And I'm pissed that she has to be.
I knew there was going to come a time when pregnant people and newborns were gonna send me down the spiral, but I always thought it would start with my boss' daughter (the first baby I saw post-op). It didn't, so I thought I was safe.
Boy was I wrong.
All the feelings were just waiting for 5 months to pass and me to drop my guard.
Oh well, I'll just wall myself off while I work on it. I mean, I can't be so self-centered as to ask my friends not to talk about their pregnancies, can I?
I found out by accident that radiation had killed my ovaries. A quick off-hand comment by some doctor that I never saw again and I'm sitting stunned in the office.
I never meant for my daughter to be an only child.
And I'm pissed that she has to be.
I knew there was going to come a time when pregnant people and newborns were gonna send me down the spiral, but I always thought it would start with my boss' daughter (the first baby I saw post-op). It didn't, so I thought I was safe.
Boy was I wrong.
All the feelings were just waiting for 5 months to pass and me to drop my guard.
Oh well, I'll just wall myself off while I work on it. I mean, I can't be so self-centered as to ask my friends not to talk about their pregnancies, can I?
Tuesday, February 1, 2011
A quick update
Someone pointed out to me that I haven't updated in a bit, so I'm doing a quick copy and paste (too tired for more atm. . .)
At my two month post op check up, it was discovered that all of the cancer that the doctor had cut out had grown back. Now I'm on chemo again (3 month cycle that runs through March, I think). Harsher stuff this time. (My hair fell out just before Christmas, the first week after chemo I'm pretty much useless, blah, blah, blah.)
I am having trouble working full shifts because I'm so tired all the time, so my income has gone down. If something doesn't happen soon, I'm going to have to move back north, so I have people to take care of me.
That's pretty much it for now. I'm working on getting my energy back (instead of my day being a series of naps, I try to stay awake at least until Le Beastie gets home from school, working on walking more (not working out quite like it should atm. . .) and trying to drink more water, not tea) and trying to stay upbeat (sometimes it even works).
And that's my update.
At my two month post op check up, it was discovered that all of the cancer that the doctor had cut out had grown back. Now I'm on chemo again (3 month cycle that runs through March, I think). Harsher stuff this time. (My hair fell out just before Christmas, the first week after chemo I'm pretty much useless, blah, blah, blah.)
I am having trouble working full shifts because I'm so tired all the time, so my income has gone down. If something doesn't happen soon, I'm going to have to move back north, so I have people to take care of me.
That's pretty much it for now. I'm working on getting my energy back (instead of my day being a series of naps, I try to stay awake at least until Le Beastie gets home from school, working on walking more (not working out quite like it should atm. . .) and trying to drink more water, not tea) and trying to stay upbeat (sometimes it even works).
And that's my update.
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