I went back into the hospital on Monday after I woke up and realized my wound was leaking (ewwww, sorry), a certified Bad Sign. My mom called the doctor and told us to come to the ER, where he would meet us. Part of me was hoping that they'd give me some antibiotics and I'd be free to go, but I was fairly certain that that wouldn't be the case.
In short, they ran a CT, collected some of the fluid, and told me they were admitting me. I was supposed to start back at work on Tuesday, so this was kind of a bummer, to say the least. They also wouldn't let me eat or drink anything since they weren't sure what they were going to do with me, which left me pretty miserable (as many can attest, I don't do well without food). That night, they informed me that my ventricles were back to being severely enlarged and that they would be putting in a shunt the next day. Who likes brain surgery? Not me.
They had tried to avoid the shunt from the get-go, since they have a tendency to get infected/malfunction. The doctors were hopeful that my brain would naturally adjust and figure out where to send my cerebral spinal fluid all on its own. Alas, it did not, so they put in a peritoneal ventricular shunt on Tuesday afternoon. A lot of people (well...relatively speaking) have shunts, so it's a pretty short procedure. And Dr. Lam, my beloved neurosurgeon, has spent much of his career inventing the devices, so I was pretty confident in his abilities.
The surgery went well, and they ended up exploring the infected area, too. The concern was obviously that the infection would spread to my brain, which would clearly not be good. As I later found out, they secured that pesky loose bone in the back with a couple of titanium rods and made the incision "water tight." Yeah, thanks. On Wednesday, they inserted a PICC line, which is basically an IV that leads to my heart (whoa!). It can stay in for a long time, meaning I can administer the antibiotics I need at home. The whole insertion process was not so fun, but at least I don't have to be poked all the time, since I'll need these meds for another two weeks.
Being in the hospital was different this time. I was definitely waaaaay less nervous about the surgery, but I also wasn't in the "I can't believe this is happening" camp anymore. I guess I was more annoyed than anything else--I had finally reached a point in my initial recovery where I was comfortable with my independence and able to successfully leave my house, walk around, etc. etc. I was feeling more normal than I had in a long time. This surgery definitely doesn't take me back to the beginning, but it's frustrating to be so dependent upon other people again. I was ready to have my life back. I still will, it's just going to take a little longer.
The other frustrating part is that, before the shunt surgery, I was kind of able to just leave this whole brain tumor experience in the past. Yes, it was scary and life-changing and all of that, but it was out, it was benign, and I was fine. Now, this shunt is going to be part of my life forever. It might need to be replaced at some point (it also might not...some people have them for decades without a problem). As the doctors told me this week, I will always need to be very careful when I get sick. If I get an infection anywhere in my body, it could spread to the shunt, and an infected shunt is a useless shunt.
For now, I'm just hanging out with my antibiotics, laying low, and willing my hair to grow (I'm back to bald). I get my staples out next week, stitches out the following week (yes, they used both...), and I also have to go see an infectious disease specialist. Sounds...ominous. Let's just hope these meds work, and I can be back on my feet--for real this time--in a few weeks.
Saturday, January 26, 2008
Monday, January 14, 2008
hospital bills are my friend, hospital bills have no end...
The first bill has arrived! Yes, friends, "medical" and "room" charges all for the low, low price of $99,785.66! And that's not even the tip of the iceberg. Thank goodness for health insurance.
Also, "medical"? What does that even mean? Wasn't it all medical? I'll be calling to get an itemized bill, if only because I'm curious.
Also, "medical"? What does that even mean? Wasn't it all medical? I'll be calling to get an itemized bill, if only because I'm curious.
Wednesday, January 9, 2008
hokay, so...
The appointment yesterday was...interesting. The doctors answered a lot of my questions, but also gave me a ton more (they're very hesitant to answer questions, those doctors).
We entered the hospital, and my started beating really fast followed pretty close by near-hyperventilation. Not to sound like a hypochondriac. Everything was fine, but I was just a little sensitive about being there. Once things started rolling, things were okay, though. I had my CT scan, which only took a couple of minutes, then my dad and I headed over to the actual clinic (which is, conveniently, on the other side of the world). I thought we'd be in the waiting room for a while, since they scheduled my CT and actual appointment an hour apart, but we got in pretty quickly.
Anyway, the nitty gritty:
1) Neurological functions all look good. I'm having some very, very slight delay on my left side, but I'm also right-handed, so that might just be the way I am.
2) During the surgery, the doctors removed part of the bone in the back of my skull in order to gain access to my brain. When they replaced it, they left the bone as sort of a trap door so that if there was swelling, my brain wouldn't be squished. Looking at the CT, though, the bone isn't really where it's supposed to be. It's not completely off, but it's off-ish.
3) There's some fluid accumulating at the back of my head because, apparently, my brain doesn't know where to put it now that the tumor's gone. The first doctor seemed troubled by this in addition to my morning headaches (thought those were normal...guess not), but when "the boss" came in, he wasn't as concerned. I think that, if this continues, a shunt would be the solution, although that's just speculation. They did say, however, that because everything else is looking so good, it wasn't a huge deal right now.
4) My scar is still infected, so they put me on another course of antibiotics. They do, indeed, think that the inside stitches (or at least the one) are coming out. I really don't know what the solution to that problem is, but they're having me come back in three weeks to check it out.
Dr. Lam gave me a lot of other information. I can't play contact sports, for instance (well, shoot!), and I'm free to travel, health-wise. And while he told me that he doesn't believe my type of tumor to be genetic, he did say that he could grow back sometime over the course of my life, in which case we'd "have to do this all over again." Let's just hope that doesn't happen. They'll be monitoring me at least once a year for the rest of my life, which is actually pretty reassuring.
All in all, it went okay. It was pretty much how I thought it would be, and it was fun to see the doctors who I'd gotten so attached to while I was there. For now, I'm just going to continue taking this one day at a time.
We entered the hospital, and my started beating really fast followed pretty close by near-hyperventilation. Not to sound like a hypochondriac. Everything was fine, but I was just a little sensitive about being there. Once things started rolling, things were okay, though. I had my CT scan, which only took a couple of minutes, then my dad and I headed over to the actual clinic (which is, conveniently, on the other side of the world). I thought we'd be in the waiting room for a while, since they scheduled my CT and actual appointment an hour apart, but we got in pretty quickly.
Anyway, the nitty gritty:
1) Neurological functions all look good. I'm having some very, very slight delay on my left side, but I'm also right-handed, so that might just be the way I am.
2) During the surgery, the doctors removed part of the bone in the back of my skull in order to gain access to my brain. When they replaced it, they left the bone as sort of a trap door so that if there was swelling, my brain wouldn't be squished. Looking at the CT, though, the bone isn't really where it's supposed to be. It's not completely off, but it's off-ish.
3) There's some fluid accumulating at the back of my head because, apparently, my brain doesn't know where to put it now that the tumor's gone. The first doctor seemed troubled by this in addition to my morning headaches (thought those were normal...guess not), but when "the boss" came in, he wasn't as concerned. I think that, if this continues, a shunt would be the solution, although that's just speculation. They did say, however, that because everything else is looking so good, it wasn't a huge deal right now.
4) My scar is still infected, so they put me on another course of antibiotics. They do, indeed, think that the inside stitches (or at least the one) are coming out. I really don't know what the solution to that problem is, but they're having me come back in three weeks to check it out.
Dr. Lam gave me a lot of other information. I can't play contact sports, for instance (well, shoot!), and I'm free to travel, health-wise. And while he told me that he doesn't believe my type of tumor to be genetic, he did say that he could grow back sometime over the course of my life, in which case we'd "have to do this all over again." Let's just hope that doesn't happen. They'll be monitoring me at least once a year for the rest of my life, which is actually pretty reassuring.
All in all, it went okay. It was pretty much how I thought it would be, and it was fun to see the doctors who I'd gotten so attached to while I was there. For now, I'm just going to continue taking this one day at a time.
Tuesday, January 8, 2008
Saturday, January 5, 2008
The "why me"s, fear, and other fun stuff
I have my first follow-up appointment with my neurosurgeon on Tuesday, preceded by a CT scan (no MRI, thank God...I have grown to hate those things). It was actually supposed to be the following Tuesday, but the doctors decided to move it up a week because one of my stitches was infected (I think it's gone now).
Real phone conversation to the neurosurgery resident:
Me: I'm a little concerned because the bottom of my scar is infected, and even though I'm taking antibiotics for it, it's pretty close to the bone. I just don't want it to spread or anything.
Doctor: Is it draining?
Me: Um...no.
Doctor: Does it drain if you squeeze it?
Me: I...don't...think...so?
Doctor [nonchalantly]: Well, you're welcome to come to the ER...
Yeah, that's quite alright, thanks. But anyway.
I didn't really have a lot of time to feel sorry for myself while I was in the hospital, simply because everything happened so fast. The doctors were very matter-of-fact, told me what was wrong, and then told me what they were going to do about it. I was certainly afraid, believe me, but I think a lot of me had accepted the situation for what it was. And, really, spending my time questioning why this was happening to me was pretty futile. Some grand karmic retribution for a past life? Or maybe God just hates me...
One of the most important lessons I've learned over the past month is that shit happens. To everyone. If God hates me, then God hates everybody else, too. And I really don't think that's the case.
The fear, though, they "why me"s came over me the day before surgery, when the doctor came into my room to discuss the surgery with my family and me. He told us the risks: bleeding, infection, and stroke. The first two I could handle. I had internally acknowledged those particular risks, but stroke? Of course. It's always a possibility when you're dealing with the brain, but I hadn't really thought about it. And then I lost it. What if I was not myself after the surgery? What if something happened, and I was simply, fundamentally not me? I realized then that my biggest fear about this surgery was not of dying, but of living as something other than who I was.
Now, a month later with this neurosurgery appointment looming, my fears have shifted as I've begun to process this whole experience. The questions are circling: Will this thing grow back? Will I need a shunt? How is this going to influence the rest of my life? Are my hypothetical children more susceptible to this because of a genetic predisposition? What if the CT scan isn't normal?
I know I can't live my life this way. Tomorrow isn't guaranteed for anyone, and spending my time worrying about what will happen is only going to frighten my today. It's hard, though, especially right now. Going to the doctor is a scary prospect, considering the last time I went they immediately admitted me to the hospital. The fear will wear off, I hope, as this becomes a part of my life. Even still, I'm freaked out. Cross your fingers for Tuesday.
Real phone conversation to the neurosurgery resident:
Me: I'm a little concerned because the bottom of my scar is infected, and even though I'm taking antibiotics for it, it's pretty close to the bone. I just don't want it to spread or anything.
Doctor: Is it draining?
Me: Um...no.
Doctor: Does it drain if you squeeze it?
Me: I...don't...think...so?
Doctor [nonchalantly]: Well, you're welcome to come to the ER...
Yeah, that's quite alright, thanks. But anyway.
I didn't really have a lot of time to feel sorry for myself while I was in the hospital, simply because everything happened so fast. The doctors were very matter-of-fact, told me what was wrong, and then told me what they were going to do about it. I was certainly afraid, believe me, but I think a lot of me had accepted the situation for what it was. And, really, spending my time questioning why this was happening to me was pretty futile. Some grand karmic retribution for a past life? Or maybe God just hates me...
One of the most important lessons I've learned over the past month is that shit happens. To everyone. If God hates me, then God hates everybody else, too. And I really don't think that's the case.
The fear, though, they "why me"s came over me the day before surgery, when the doctor came into my room to discuss the surgery with my family and me. He told us the risks: bleeding, infection, and stroke. The first two I could handle. I had internally acknowledged those particular risks, but stroke? Of course. It's always a possibility when you're dealing with the brain, but I hadn't really thought about it. And then I lost it. What if I was not myself after the surgery? What if something happened, and I was simply, fundamentally not me? I realized then that my biggest fear about this surgery was not of dying, but of living as something other than who I was.
Now, a month later with this neurosurgery appointment looming, my fears have shifted as I've begun to process this whole experience. The questions are circling: Will this thing grow back? Will I need a shunt? How is this going to influence the rest of my life? Are my hypothetical children more susceptible to this because of a genetic predisposition? What if the CT scan isn't normal?
I know I can't live my life this way. Tomorrow isn't guaranteed for anyone, and spending my time worrying about what will happen is only going to frighten my today. It's hard, though, especially right now. Going to the doctor is a scary prospect, considering the last time I went they immediately admitted me to the hospital. The fear will wear off, I hope, as this becomes a part of my life. Even still, I'm freaked out. Cross your fingers for Tuesday.
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