Quick post, Life's Good

The last 3 weeks or so I've been getting back to normal. It's very nice. I'm totally off Keppra XR and Lyrica. And I haven't felt this good in a long, long, long time.

So, since I last wrote, I had an EEG. That would tell the doctors if I was having any seizure activity. I'm happy to report that I ROCKED it!! Turns out that my doc down at MPRI was right all along. At the end of my treatment down there, he more than hinted that he didn't think my issues were related to seizures. He did sorta hint that it was probably more of a medication issue. He's a brilliant man.

So, Kev and I went earlier this month for a follow-up with the new neurologist (I really, really, really like him). That's when I got the news that my brain is awesome (normal EEG). Now, that doesn't mean I'm off scott free with the drugs. I am now on a low dose of Trileptal. Very low. But I feel normal, have no numbness. No weird dreams. No shortness of breath. I guess I just can't take the high doses of these drugs. And Trileptal is a relatively "oldie but goodie" seizure med.

All I know is that I am actually plotting my return to work. I have been walking. I actually did some very light free weights and machines at the Y yesterday. I'm trying to add some muscle, because putting on weight has just been such a challenge.

I get tired and cranky very easily, though. But the anxiety - it's not totally gone (especially when I overdo it), but I can't even begin to tell you how much better it is.

All in all, I am a totally different person than I was this time last month, when I tearfully (and honestly!) declared to my mom, "I think I need some serious psychiatric help. I might have to go away for awhile." It was all the drugs. That is totally scary.

Kevin's up to bat next with his version of my total mental and physical breakdown with the next post. It should be a goodie! Stay tuned.

Neurology Follow-Up

Well, I couldn't even make it through 3 minutes meeting with my neurologist, Dr. Snook, without crying. Actually, I think the guy felt pretty bad for me. Even with being done with the Decadron, I'm still having anxiety problems! And, on top of it, I had bad swelling and pain/drainage in my right ear from the atypical meningioma, which if you will recall, ended up getting part of the beam on it. It hurt back at the end of June and then when we redid the fields, the ear canal wasn't part of them. But I almost immediately had to go on Decadron anyway, so it probably hurts now because I was weaning off it. Now I have some ear drops from Dr. Snook and all is better. Geesh!

He's helping me with the ear, and we've added Lyrica to the mix. Apparently, it's good for nerve pain (I've been having sharp, stabbing pains in my head every now and then). But even more annoying, it's hard to sleep on my right side. It's like it's completely bruised and it feels like there's some pressure there. Lyrica is also good for seizures, which should be a good backup to the Keppra. Hopefully Lyrica isn't something I have to be on long-term. I really hope not. The less drugs the better.

Here is an example of a recent day: I went to acupuncture last week, and then got a bite to eat with my mom. We were going to do some shopping for some new drapes. But I just couldn't bring myself to do it. It's so exhausting and overwhelming at the same time. That's the only way to describe it. And it happens every day, at some point in time. I'm even tearing up right now just thinking about it. It's just very hard to explain.

I feel like every day is Groundhogs Day. I try to get outside and walk, and I'm good for a certain period of time, then I'm done. And when I'm done, I'm totally done. I told Dr. Snook we were planning on taking a trip to Maine in the middle of August. And while I'm totally excited to get away - we NEED to get away - I am petrified of traveling. Of noisy airplanes - and worse - noisy airports. I told him that I just want to get something that will help me not crawl in a ball and cry in the corner. I've got some drugs and some earplugs, but I'm seriously thinking of investing in some Bose noise reduction earphones. It would also be good for work, too.

Top Ten

Here's my top 10 list of events related to the meningioma. With 1 being the worst. This might surprise you.

1. The Hematoma

By a mile, this 'complication' was by far the worst as far as recovery and as far as life threatening-ness. (Like that word?!) Remember, the original meningioma (brain tumor) was there for probably years, if not decades. The fluid that built up 6 weeks after surgery, while not covering as large an area as the tumor, built up quickly. And kicked my ass. The whole story around it was more dramatic, and the recovery from the surgery was much more intense than the original craniotomy, if you can believe that. There's nothing that compares to this one. Visit the links above, or the links from April 2009 posts for a trip down memory lane with me.

2. The last 10 proton beam treatments

Proton beam radiation, while in theory has less side effects than other forms of radiation, can still kick your ass. I learned the hard way. La-di-da, all was going well. Then right around mid June (around treatment 28-ish)...BAM. And it's still kicking my ass.

3. The First Decadron Withdrawal - after the craniotomy

Decadron sucks.

4. The 12 Days Before the Craniotomy (Hey, isn't that song?!)

The anticipation. The medicine side effects. The calls from well wishers who sounded like I was off to a death march instead of getting a surgery that I really did need and really wasn't dreading. It was just a weird time.

5. The Craniotomy, including the hospital stay

Bet you thought this would be up earlier on the list. It's not, probably because I was so focused and prepared for this, unlike anything else that's come up over the last 6 months. As far as pain and recovery and fatigue: I wasn't really in that much pain, because I couldn't feel anything for at least two weeks after cause of all the anesthesia. And I got to sleep for as much as I wanted. And I didn't have to clean out the kitty litter. And I didn't have to cook or clean. And I was kind of in a cool fog, like a dream, most of the time. That was kinda cool.

7. (Tie) Seizures and Learning I had a Grade II meningioma

Seizures right after the craniotomy, right after the hematoma and lingering through radiation treatments. They are being addressed, but any way you slice it, seizures suck.

Going into Dr. Shapiro's office to get my staples out I thought I was home free. Then he drops the bombshell on me - Grade II (atypical) meningioma. It should have been a happy day, instead I was totally blindsided. Now I had to deal with phrases like 'radiation oncologist'. Ick.

8. Marker (Fiducial) Surgery in preparation for Proton Beam

I actually could move this up as a 3 way tie. It was because I had the marker surgery 3 weeks after having the hematoma surgery. And 2 surgeries in a month is hard on the old bod. If I had this surgery done any other time, it probably would have been much easier. I had lots of swelling and pain that I wasn't anticipating. It's different for everyone, but for me, it really was painful.

9. Decadron during Radiation and Post-Radiation Blues

See post about my other Decadron experience towards the end of radiation. And I'm still continuing to struggle with radiation effects after radiation is done. It's a lot harder than I thought it would be. I definitely have good days (like today) and days where it's hard to think and be around people and I generally don't feel well and am very fatigued. This will get better, but it will take time.

10. January 2009

Leading up to the diagnosis and final confirmation of the meningioma diagnosis was an ordeal in itself. My husband is the best in the world.