Crazy Walks Back In

Crazy walked back into the Siminski household. Well, crazy has been in here for quite some time. If you look back on my posts the past two months or so (actually, this entire meningioma journey!) you'll notice three distinct themes: crying, pain and anxiety.

Turns out I WASN'T supposed to be weeping uncontrollably every day and having anxiety attacks. I didn't know that's what they were at the time.

So......after a horrible flight to South Carolina where I met my mom with sobs, I continued crying the entire trip. It was bad, it was scary. I couldn't do anything. I couldn't eat. I was sleeping all the time. Everything made me cry. It scared me and my mom. So bad that on the Monday I was in S.C., my mom had to call Kevin. He called the doctors. Turns out I had a very, very bad emotional and physical side effect of Keppra XR, which had been prescribed (for various reasons) just about a month before. Well, the timing of the South Carolina trip coincided with the drug fully loaded into my system. I guess it happens to about 1 in 5 patients on this drug. I think the generic keppra was doing the exact same thing, but just not quite to the dramatic extent that the extended release was. (Hence, my anxiety - although I didn't know that it was that - during the entire radiation treatment.)

It was so bad, that my mom had to escort me back to Indiana on Tuesday (my original departure date). She was able to get on the same flight as me, thank goodness. Within 72 hours, my mood, appetite, etc. were dramatically better. But it wasn't without yet another ER trip to get fluids in me because the withdrawal from the drug was rough, rough, rough. Geez! There was basically no taper. One night I had my usual dose. The next night half dose. Then I was done with it. I had to be. It was bad news.

Now, the same time I started XR, I also started Lyrica for some slight nerve pain I had been having. Wouldn't you know it, about the same time I went through the Keppra Crazies, I started developing debilitating muscle pain. I thought I just pulled a muscle and was tense from just the sheer physical and emotional toll I had been through the last week. The pain didn't go away with time, muscle relaxers or some pain meds. That made me suspicious....

I'm now tapering to see if I'm developing an extremely RARE side effect of Lyrica. It's exactly the same feeling I had when I was on Remicade and Humira (which both gave me the lovely side effect of drug-induced lupus).

This is potentially the SIXTH pharmaceutical drug that has given me such bad side effects, I've had to stop it.

Ah, the fun never ends. If I can just get all these medication issues fixed, I will be one happy camper. But seriously, the difference (just ask Kevin) between me the last 6 months and the me now is like night and day.

PS: Understandably I have postponed the trip to Boston to see the endocrinologists until the beginning of 2010. I've got other stuff to worry about!

Ups and Downs

I didn't think this was how recovery was going to be at all. What is so frustrating is that this weekend, I felt better than I had in months. Over the past few days, it's all gone down hill, unfortunately.

I've been doing research on thyroid issues and I'm pretty sure that I know what's going on with me. The good news is that I have an appointment out in Boston at Mass General with one of their endocrinologists since all the ones in central Indiana are completely out of their league with a patient like me. She's worked with Dr. Thornton to help other meningioma patients in the past, and I am hopeful that we can start to untangle a lot of stuff. I am convinced that either my thyroid/pituitary/and subsequent hormone imbalance are all related to the atypical meningioma, the Crohn's and the ankylosing spondilitis. Crazy, but I will explain more in a later post. Yes, I know that I am a difficult patient, but in preparing for this appointment (late sept) I've already uncovered a number of things that SHOULD have raised flags a long time ago.

I'm also just generally uncomfortable sleeping. My screws are sore, which makes me lay on my left side more. That has gotten sore, too. And 3 out of 4 markers from the radiation are still quite sore, even more so after radiation is done.

My new acupuncturist is really worried about the amount of energy that I have. And Jude is worried that I haven't put on any weight. It's not that I don't want to eat, it's that I get hungry and then can't eat a bunch. Or I make something, and it's taken so much energy, that I'm then not hungry enough to eat a lot.

I also think I had an anxiety/panic attack after a lunch with an old family friend today. Unfortunately, the place we went to was far too loud (for both of us), so there was waaay too much stimuli. Combined with the headache that I already had, I crumbled on the way home, and then took a 2 hour nap. The one thing she kept repeating to me is to take it one day at a time. But as I sit here typing through tears, it's hard to think that way.

Okay, there is a silver lining to all my doom and gloom today. I'm getting a second opinion tomorrow from another neurologist to see if we can't do something with these issues I've mentioned throughout the post (plus another long list of symptoms).

But the best news is that after the neuro appoint, I'm heading down to South Carolina tomorrow to spend 5 quiet, relaxing days with my mom. I'm even going to meet another meningioma patient - who just happens to live down the street from her. I think all this will help me out. I just want to dip my feet in the sand and the surf, and I think that will help my soul.

Bittersweet Week

I woke up to the news this morning that Sen. Ted Kennedy succumbed to his brain tumor. I immediately burst out in tears. Not because of his politics, but because he was a fellow brain tumor patient.

At MPRI I had the fortune of meeting a young man about 2 years younger than me. He had the same type of malignant tumor (glioblastoma multiforme) as Kennedy. As opposed to a meningioma - even an atypical meningioma, a GBM, as they are commonly referred to, is NOT the kind of tumor you want. This young man had already been through 2 surgeries, full brain radiation, and was in the process of completing his course at MPRI. Then he told me he was going to try an experimental vaccine that prods the immune system to fight the cancer. I believe that Kennedy had done the very same thing. I believe there was at least one other GBM patient while I was at MPRI.

What sticks in my mind with this guy was how normal and patient he was. His dad was with him everyday and you could tell this guy was under stress by the look on his face. His son, on the other hand, was the complete opposite.

I think about this guy a lot, but today especially it's hard. I've been crying on and off all day and I really wonder how he's doing. Whether he's got the vaccine. What his prognosis is. But for the grace of God, I could have been him.

On top of this, I met with Dr. Henderson, my Radiation Oncologist up here in Indy today. I was already emotional given the whole Ted Kennedy news today. I tried not to tear up, but I did when talking to him, the intern, and a tech intern (at least I think that's who she was) about how the beaming went. This is the first time I've seen him since the end of treatment, and he did most of the gruntwork in plotting out my treatment, so it was an emotional meeting for me. We also talked about some of the lingering issues (besides being so damn emotional), which is always hard to talk about, which made me cry even more. It's so embarrasing to not have control over your emotions. It's those last 10 treatments - they really knock you down. He said that happens with a lot of people. The first 28 or 30 treatments are a breeze, and when you go over that, you really do put your body in a place that not a lot of people have been. It's a pelting to the brain and everyone reacts differently.

I did learn that the intense pain that I'm feeling by the screws from the craniotomy is the result of the beams being more "focused" on these areas, and it's not uncommon to have more pain around the "hardware" in your head. That makes me feel better. And he gave me something to help with the pain, which is good. The good news is that he said "in a few months, you will feel a lot better. You've just got some more healing to do."

To top everything off, though, I had to renew my driver's license because mine expired in June. I didn't even know this until I was at the airport going to Maine. So yesterday, my mom and I went. I looked up on the BMV site to see what they were going to do, and according to the site, all I had to do was a vision test. No problem. As long as I didn't have to get a new picture.

Well, wouldn't you know it. The lady helping me said, "just step over here and we'll get your photo." I was mortified. Luckily, she took me to the FAR camera setup. I hemmed and hawed for a few seconds, and then I said to her, "I'm literally missing half my hair. Do I HAVE to get a new picture, or can you use the old one?" She said no, and that I even had to take off the scarf. And you know the BMV. By this time, half the place was looking over at me. So I took the scarf off and sucked it up. I mean, I have to have a valid license for a number of things. And now I have a daily reminder that my head looks like it does. Great. I'm totally mortified.

Not a great week for Jenny.

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.