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. . .

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. . .)

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. . .

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!!

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!)

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. . .

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.

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?

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.

Getting better all the time. . .

I'm now back up to 5 days a week at work (though with only 5 hours instead of 8) and most of my pains are gone.

I have to work on my stamina (after work, I'm usually ready for a nap and most nights, I'm in bed by 8:30), my flexibility (I can't sit back against a wall and put my legs anywhere near flat on the floor) and muscle strength (my Kegel muscles are shot, leading to some interesting situations when I'm in new places).

But I'm not complaining. It could be (and has been) worse.

I have an appointment at the end of the month where we'll go over my last scan to see if the cancer is all gone. Until then, it's business as usual. . .

And now, it's time to get ready for bed. . . Or maybe WoW. Nah, definitely bed. . .

Wow. . .Almost two weeks since I've said anything. . . It's a record. . .

Well, in case you missed it, I had my surgery. Didn't wake up screaming or anything like I'd feared (actually just kinda zoned in to wakefulness). Haven't even really had a moment of thought about what happened (besides running down for my SIL the list of things I'm now without).

The doctor said he got "all the cancer he could see." I'm not gonna look too deeply into that, just gonna take it for what it is and move on.

The nurses at the hospital were all wonderful (even at 2am when they had to come in and take my vital stats). I found out one of them is going to be going through a hysterectomy soon, so I gave her my contact info so she has someone to talk to who has been where she is going to be (well, her hysterectomy is for a different reason, but a hysterectomy is a hysterectomy, right?).

Ok. . .enough with the word hysterectomy. . .

So here's how it went (cuz I can never do things the easy way). . .

On Monday (my birthday), I got a call from the doctor's office that was doing the surgery. They told me that they were able to get the operating room for an hour earlier than expected, so they wanted me to come in an hour earlier. Great. So now, instead of getting up and leaving at 5 am (when we'd planned) we now get to get up and on the road at 4am. Whee.

So we get up, and get on the road, and get to Atlanta at about 8 am. (My uncle doesn't drive bat outta hell fast like I do, but he can move when he wants to.) The doctor's office doesn't open until 8:30, so we sit outside for the office for a bit, me getting more and more nervous, because this building just doesn't LOOK like a doctor's office. So, at 8:30 the door opens and the nurse asks me in. She goes over the paperwork stuff and gives me my admission papers to the hospital. Ok, so far so good.

Get to the hospital, get to checking in and stuff. At one point, I was called to the back and went to grab my bag (thinking that they were gonna get me checked into my room and then I'd be taken from there to the surgery stuff). The nurse said no, I could leave my bags out there. I'd be back out. I get into the back and the nurse is like. . . Take everything off and put this gown on. Huh? Didn't you just tell me I'd be back out to the waiting area? Am I going out there in this spiffy gown?

Whatever.

I get into the gown and then it's needle time. I told the nurse (because I know what's coming) that I am not an easy person to find veins on. She said ok and went to looking for veins. Couldn't really find any good ones, so she started an IV line and went to look for one to use for drawing blood for labs. After two sticks she gave up. Another nurse came in and gave a couple more sticks. Eventually, they decided to wait until I was under and my veins had opened up, because they had a better chance to get blood then.

Then came Mike. Mike was the guy who came to talk to me and mark me up on the off chance that I would have to have an ostomy bag. Mike explained to me how the bag was used and all the tips and tricks. He even was nice enough to give me my own bag to play around with (he said that people who had to have the bag did a bit better if they had time to acclimatize themselves to the bag beforehand).

So there I am, playing with my little bladder bag thingie when another nurse comes in. I let this nurse know that my uncle is not really a hospital person, and since I'm obviously not going back out there, hows about we cut my uncle a break and let him go?

So, they go get him, and he comes in the back (it's now getting crowded in this little "room" we're in) and drops off my bag and the security guy was there to check all my stuff in and I showed my uncle my little ostomy bag and told him that if I had to use it, I could pee standing up! The security guard said, "Well, you could charge admission for that, I bet ya."

Ok, everything's checked in, my uncle is off to get some rest before hitting the road back to Valdosta, and I'm bored. (They took my phone away from me to check it in.

Ok. . .I'm going to have to break this into two parts, because I've been sitting still for like two hours and my back is screaming. More of the story later. . . (Sorry. I don't normally break off when telling a story like this. . .)