The Better Brain

An update a month earlier than expected

2009-03-21T07:49:00.000-07:00

I know you've all been waiting at the edge of your seats for this. ;-) I ended up seeing an optometrist at my primary care clinic last week. He ran a few tests and concluded that, yes, there is a problem with my peripheral vision, but he couldn't see a reason why. Everything inside of me looks good. He wanted me to get my visual field tested and then see a neuro-ophthalmologist at the clinic, just to make sure everything was okay.

On Tuesday I had the Goldman Visual Field Test. It's basically a giant half-sphere with a chin rest in the middle. You're supposed to stare at a light in the center of the sphere while other lights of varying sizes are brought in and out of your field of vision. You let the technician know when you see the lights by tapping on the table.

When I went to see the neuro-ophthalmologist on Thursday, he showed me the results of my test, which were pretty much exactly what everyone expected them to be. I'm missing about a quarter of my vision on the lower left and lower right sides. It's a little unnerving to have such conclusive results, but, to be honest, it hasn't been affecting my life much. If Dr. Neurosurgeon wouldn't have said anything at my last appointment, I probably wouldn't have done anything about it. Or cared, really.

After examing my eyes yet again, the neuro-ophthalmologist basically said again that everything looks great and that this whole eye thing is just a result of the surgerys. He mentioned that it might be a good idea to get the visual field test performed again at a later date, just so they can verify that my vision isn't getting worse. If it remains consistent, though, then he's not too worried. This situation is not ideal, obviously, but I'll take it. As I said before, if this is the worst side-effect of my surgery, then I'd say I'm pretty lucky.

So that's that. I'm going to verify that Dr. Neurosurgeon has received the test results, and then I'm going to cancel my appointment at the U. I'm not planning on being there again until December for my next MRI, which is a very good thing.

Thank you all for the positive thoughts. I'm happy to report my good news!

Another day, another doctor

2009-02-24T18:34:00.000-08:00

I've been debating about posting this, and have started and stopped a couple of times. I think the reason why I left this little blog alone was because I didn't want to turn into one of those people who was constantly kvetching about her health problems. Today, though, I'm going to kvetch a little, if only for my own sake. Feel free to leave at any time. ;-) Who knows, maybe I'll resuscitate the blog. Or maybe I'll turn into an account of my ever-fascinating daily life. We'll see what happens.

I saw my neurosurgeon the other day for a general follow-up appointment, my second in the past year. At the last one, in September, everything looked good, and I was told that, if my next MRI came up clear, I could switch to having appointments once a year (rather than once every six months). This was good news, obviously. If you're not familiar, MRI's are sort of a stressful experience. I've finally reached the point now where I can nearly fall asleep during the half hour scan, which is no small feat, considering how frickin' loud they are. I'm also not claustrophobic, though I can't imagine what it would be like for someone who is (they put a plastic CAGE over your FACE...it's unenjoyable, to say the least).

Anyway, at Tuesday's appointment, everything, once again, looked good. There has been no tumor growth, and my ventricles are normal-sized. When the resident was testing my peripheral vision, however, she noticed that I'm not seeing as well as I should. This isn't really that surprising to me, since I've been noticing some subtle vision problems myself, but it's disheartening nonetheless. My neurosurgeon referred me to an ophthalmologist at the University, but I can't get in to see him for nearly two months. I also have to go see my primary care doctor first in order to get an official referral so that my insurance will cover the appointment (yay insurance...). Apparently ophthalmology appointments can take FOUR HOURS, so I'll be missing at least half a day of work. Yikes.

I'm not really sure what peripheral vision loss is indicative of, or if they can fix it. Dr. Neurosurgeon indicated it might be a shunt-related problem, though I don't know in what capacity. If they need to adjust the pressure, they can do that from the outside by putting magnets near the shunt track (this makes me feel like a robot). If it's something else, will I need more surgery? I don't know. They didn't suggest that as a possibility, but they didn't really suggest ANYTHING as a possibility.

So the moral of the story is, I'll be living in mystery for another two months or so. Part of me was hoping to walk away from this experience scot-free. And I've been lucky--I haven't really had any brain tumor-related deficits to speak of. If peripheral vision loss is the worst thing that happens to me, then so be it. I'll deal. Even still, I'm anxious to hear what the eye doctor has to say. Hopefully this is manageable and not something that's going to continue to get worse.

Okay, I'm done now. Life is going really, really well otherwise, so I'm doing my best to focus on that. Onward and upward.

Paranoia it is

2008-03-04T15:29:00.000-08:00

I had a follow-up MRI appointment today (just for general purposes, not because of the headache), and Dr. Lam told me this is the best my brain has ever looked. So, hey. Nothing to worry about.

Striking a Balance

2008-03-02T14:38:00.001-08:00

I have a headache. This headache is more severe and more persistent than any headache I've had for roughly 2.5 months. So, the question becomes, is this just a headache? Or is this an Important, Meaningful headache? I'm going to give it a little while and see what happens.

And this is my life: striking a balance between paranoia and legitimate concern.

2008-02-05T14:15:00.000-08:00

I am officially freeeeee of my picc line, which means I'm off the antibiotics and no longer need to stay up until all hours of the night. Everything else went well at the appointment today, too--the incisions are healing nicely AND my favorite doctor was there. I go back in a month for an MRI, but, assuming everything is fine, that should be it for a while. So...yeah. I'm feeling good.

haven't posted in a while...

2008-02-05T06:31:00.001-08:00

I'm off to the doctor today for a follow-up appointment. They ended up taking out both the staples and stitches last week, so I'm not exactly sure what we'll be doing today. I do have a lot of questions for Dr. Lam (as usual), so it's probably good I'll be able to see him in person.

The plan is to start back at work next Monday. The legislative session starts on Tuesday, which means I'll be hitting the ground running. Or maybe I'll be hitting the ground at a slow jog, since everyone there seems to be emphatic that I not push myself. I'm really excited to go back, but I do need to remember that even though this work wasn't exactly physically difficult for me three months ago, it might be now. Nevertheless, I think I'm ready to have my life back. Even though I've enjoyed spending time relaxing at home for 2.5 months (one of the upsides of this whole situation), it has definitely made me a little stir crazy.

back at it

2008-01-26T06:59:00.000-08:00

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.

hospital bills are my friend, hospital bills have no end...

2008-01-14T14:55:00.000-08:00

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.

hokay, so...

2008-01-09T15:04:00.000-08:00

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.

today with the neurosurgeon...

2008-01-08T16:28:00.000-08:00

Everything's basically fine. Will write a bigger update tomorrow.

The "why me"s, fear, and other fun stuff

2008-01-05T16:43:00.000-08:00

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.

JPA: My Space Tumor

2007-12-28T09:42:00.000-08:00

Juvenile Pilocytic Astrocytoma. I guess the cells are star-shaped, which is why it sounds like it should be living in outer space or something. Since it had probably been inside me since I was a kid, they considered my type of tumor to be juvenile (there are regular pilocytic astrocytomas, too). For a lot of people, these tumors can manifest themselves and start causing problems when children are very young. Mine didn't, for some reason. One of the mysteries of life.

Here's a link to more info, with a bunch of medical jargon thrown in.

The SCAR!

2007-12-26T16:04:00.000-08:00

Here it is, in all its glory. Prior to December 4, I had never had stitches before, but the surgery resulted in 23 of them (the ventriculostomy required an additional three, but those aren't very noticeable). Yeah, I like to go big or go home...

Sorry it's a little disgusting. The doctors have assured me that it really won't be noticeable once my hair grows out a little more (the Sinead look will not be sticking around).

Things I never thought I'd be doing...

2007-12-21T16:04:00.000-08:00

See, it's weird, me sitting here, writing about brain surgery. Up until three weeks ago, I had never been in a hospital, save after I was born, and then, suddenly, on November 30 I was admitted to one for ten days. You don't really ever predict brain tumors, obviously, and I certainly didn't predict mine. I had had weird symptoms--morning vomiting, headaches, balance issues, exhaustion, weight loss, and a whooshing noise in my right ear--but I didn't really think that any of those problems were a result of a brain tumor, of all things. Then, on that Friday, the doctor told me that I had a "mass" in my brain that was pushing on my ventricles, which were obviously compressed, and that I was lucky to be not only coherent, but also alive. I still don't know what to make of that. I'm glad I was? Yes, yes, I'm glad I was. And am.

So they inserted a tube in my brain via a hole in my skull, which drained the excess fluid until they were able to perform the surgery on December 4. The benign tumor was the size of a small, irregularly shaped Clementine, and resided for many years (we don't know how many, but potentially my whole life) on my brain stem. It's 90-95% gone now, thanks to Dr. Cornelius Lam and the rest of the team at the University of Minnesota. They're incredible, wonderful, compassionate surgeons to whom I am forever indebted.

And now here I am. Two and a half weeks post-surgery, typing this post about brain tumors. Moreover, typing this post about brain tumors and me. It still hasn't really hit me. I have a giant scar in the back of my head and my coordination is still a little off, but getting better every day. And I have headaches, different from before the surgery, though those are nothing a little extra-strength Ibuprofen can't handle. Other than that, though, everything's basically the same. I feel better in many ways, but...what? I had brain surgery? It just hasn't sunk in.

This sameness, though, the normalcy of daily life is what I am so thankful for these days. I like normal. I can do normal. I'm removing "boring" from my vocabulary. Boring is good. Boring is regular. And regular is exactly what I want.