Upstaged by a cat!

It's been a while since I have contributed to the blog so I figured I would hold up my end of the deal and update everyone. First, anyone out there ever consider pet insurance? After our weekend, it's something we are considering! Unless there are pre-existing condition clauses in pet insurance. If a pre-existing condition of eating plants is a strike then we are screwed. But after spending $1,600 on our little clyde for two nights at the Kitty hospital for a potential bowel obstruction it might be worth the investment. Maybe Congress will throw pets into the public option!

Clyde decided that our tropical banana plant would make a good dinner and he could not stop himself from eating it all day on Thursday. So thursday night he started puking and would not stop. So after watching him on Friday, we decided it was time to take him to the vet. After X-rays and such, they determined there was a questionable area and off to the kitty hospital. He came home Sunday Morning and did not have to have surgery. But we are continuing to closely monitor him. Seriously, can't I just get a break. First, I have to worry about Jenny going through two major brain surgeries and crazy side effects of medication and now I have to worry about my wife's constant companion! I just can't wait for 09 to be done with!

Now for the good news. Jenny had 9 month MRI this past week and everything looks perfect (MRI picture from 10/28/2009). No swelling, which is a concern 4 - 6 months after radiation and no recurrent masses!

What a year this has been. Two months ago, it would have been hard to look to future and say things are going to get better. My wife was a MESS. The walls came crumbling down when she went to her parents in South Carolina for what should have been R&R. Instead, a frantic call from her mother started a series of calls with her Neurologist and Radiation Oncologist to get the medication issue resolved. After looking through the drug manufacturers literature I was convinced that Jenny was experiencing serious side effects from both Keppra and Lyrica- severe psychological instability, muscle pain, extreme exhaustion, complete lack of appetite. Almost 48 hours after stopping Keppra, my wife was seriously a different person. She was starting to have break throughs of her original personality! She has slowly improved and just last week, we even saw Peter Yorn at the Vogue her in Indianapolis. This was the same girl that would yell at me if I had the TV up too loud a couple of months ago!

For the caregivers out there, the only thing I can tell each of you is to have patience. Yes, it's stressful but at the end of the day everyone responds differently to treatment. I was a shoulder to cry on almost everyday. My goal was just to be as supportive as possible BUT there were a few times that I had to remind Jenny that she was going to be okay. I was not going to let her fall into the rut that she was disabled or not going to recover. I knew and believed that everything would get better. Of course, I am an optimist!

So hopefully this begins the next chapter in this wild and crazy story...

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.

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!

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.