Maine

Kevin and I just got back from 6 days in Maine, and what a difference it has made. Yep, this is me on top of one of the 'mountains' in Acadia National Park! We took it pretty easy, but the trip was well worth it - it helped get me out of the monotony and helped me regain confidence. We spent 2 days out of the 6 hiking. I wish it could have been more, but I was exhausted, and it was bloody hot. In the '90's!!

Acadia, and Bar Harbor, ME are beautiful. It would be awesome to be out there one month or so from now when all the leaves are changing.

I'm feeling pretty good right now, but my head is finally healing so I am feeling the screws in my head again. And getting some headaches - especially on the flight back. I'll have more updates this week, but I thought everyone would enjoy this picture!

Not So Smooth Sailing

Haven't posted much here lately because it hasn't been such a smooth ride lately. Emotionally and physically it's been an extremely difficult and challenging period of recovery from this atypical meningioma. I have added a new drug to the mix - Lyrica - to help deal with the tingling on my entire left side and the pain on the left side of my skull. The good news is that it's helped, at least with the tingling. The bad news is that it makes me very tired and I look like I am a total drunk, at least on the higher dosage.

I'm going back down to MPRI tomorrow for another MRI and a 4 week follow-up. I will be happy to see all the folks down there, and especially happy to talk with Dr. Thornton about all the crushing, defeating side effects that I'm having.

That's about all for now.

Helpful Links

I'll add more.

Here's a story about MRPI. Check down at the bottom, and you'll see me quoted. Grade II patients - this will be helpful for you.

http://www.midwestbusiness.com/news/viewnews.asp?newsletterID=19700

Meningioma Mommas

Great source for anyone who has a meningioma or is taking care of someone with a meningioma. They are currently revamping their site, but any questions you have, this board is filled with patients and caregivers who are willing to help. You'll need to register (it's easy and free) to participate on the boards. And they won't use your stuff for anything else.

http://www.meningiomamommas.com/phpBB3/

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.

Adjustment

Wow, what a difference a week makes. I can't really follow-up to Kevin's post other than he hit the nail on the head with how great everyone is at the Midwest Proton Radiotherapy Institute. They are amazing, terrific and any other kind word you could say about them. I do get to see them in a month for a follow-up, so I'm not going cold turkey on them!

It's taken me quite a few days to sit down and do an entry because I'm still struggling with restlessness and/or anxiety from the damn Decadron and am very, very, very sensitive to noises. (Which is probably a combo of the Decadron and the complete pummeling I took from the radiation.) But it IS getting much, much better.

I'm still very 'into' cleaning, although I am happy to say that the plants are safe - at least for now. And this should keep getting better as I continue to wean off the Decadron. I told Kevin earlier that I feel like an 80 year old all the time, because 3/4 of my day I spend bitching about how loud one thing or another is. The TV, the cats, the cars idling very quietly outside, the low music playing at the restaurant, the construction trucks about a half mile from our house. You get the picture. I try and venture out at least once a day, but I can't explain it any other way than it is just mentally exhausting. It's really quite funny. Seriously. It IS funny.

One thing that has surprised me is that I am actually seeing some swelling around my forehead. Weird. I guess it's just mirroring what's actually going on in the noggin. But I look slightly Vulcan right now.

So, this weird adjustment period continues. It's almost like I don't know what to do with myself, but there's not a lot that I really CAN do for at least a couple of weeks.

That reminds me, Kevin's t-shirt drawers (yes, there's more than one) are calling my name....

Before and after polariods...

Her are the before and after shots! The first image was taken in January, 2009 and the last image was taken June 26, 2009.