Saturday, February 13, 2010
It's been about 3 months since I've written, but I'm back on the blog because yesterday was the 1 year anniversary of the craniotomy! We celebrated by going out to dinner with some friends, and we had a great time. And we're also getting ready to go on a mini (warm) vacation. Life can't get much better than that!
So to get you updated on what's been going on the past three months, here's a rundown:
1. I started going back to work. I'm probably working around 15 hours a week (and answering emails most times even when not in the office), so that's excellent news. I definitely try to keep my 'off days' when I don't go into the office very low key.
2. My love of reading has only increased. When I came home from work before surgery, I was quite content camping out in front of the TV. Now, I LOVE crawling into bed and reading some Sookie Stackhouse! I even read sometimes before I get my day going in the mornings. And I always read before I go to bed.
3. I started working out again. Then stopped because I was just so tired all the time. Now I'm back at it. The most I really like to do is 20-25 minutes easy on the eliptical. But I am doing my Yoga, and I absolutely love it. I'm up to about twice a week.
4. Kevin and I got through the holidays. I really didn't think they would be hard, but they were.
5. I discovered The Twilight Series. I blame Kevin for this. I was already obsessed with the vampires because of the True Blood series on HBO. He encouraged me to get the first book of the Twilight series when we were at Wal-Mart doing some Christmas shopping. I read them all in record time (see #2). I still think that Eric and/or Bill could kick Edward's ass. But I love them vampire stories!
6. I had my most recent panic attack on a plane 2 weeks ago. Kevin was with me and it was more to do with messing up my schedule than anything else, but I still do get panicky and weepy at times. But it's getting better.
7. I now liken myself to a baby. You mess up my eating or sleeping schedule - or throw in a long dinner with friends, or a lunch. Or anything where I have to do a lot of talking. And it is bad news. (see #6)
8. I went to Boston to see a neuroendocrinologist at Mass General, more to just get a second opinion on why I can't gain any weight and to check hormone levels. The trip was grinding (I met my mom out there, but had to fly there myself). But it was worthwhile. My thyroid is working well, but they emphasized that I need to get my T4 checked every 6 months (as opposed to having a TSH test). I have signs of hypothyroid but not enough to warrant putting me on anything, especially because it could cause me to lose weight. Not what I need right now. Oh, and I slept 14 hours when I got home (see #7).
9. My hormones are really working to normalize. I'm hopeful that things sort out on my own. Go body, go!
10. I've got 3 different haircuts! Basically, the left side is normal and darker. Most of the right is very fine blonde, with white wiry hairs sticking out. And I have a backwards "L" shape on my scalp that has still yet to fill in. Needless to say, this whole hair growing out thing is taking FOR-EVER. I guess it's to be expected when the beam was concentrated right below the surface of the scalp. But it's really pissing me off!
I won't be gone this long again! I've got another MRI coming up, and I'll post the results here!
Sunday, November 8, 2009
It's been two weeks of major accomplishments for Jenny! A great show at the Vogue last week (Pete Yorn!) and an NFL game. And while they were both pretty loud, I was able to handle it all! If you had told me two months ago - heck, even one month ago - that I would have done these two things, I would not have believed it!
ALSO...drumroll......I officially went back to work on Thursday! Granted, I'm only going back two days a week for half days, but it's better than nothing. I'll gradually work my way up in hours. I am so lucky to work for a boss that is so accommodating. Truly, he is the best. And I am so lucky to work with some fantastic people who are patient with me as I ramp up my hours! Wow, wow, wow!
When I got home on Thursday, I slept for a good hour. And I still have trouble being on the computer for long periods of time, but that's ok. It felt great to be out in the real world again. And not thinking about a certain cat named Clyde...
Speaking of ....the last post mentioned that he had been sick. Well, we had to take him BACK to the vet. Yes, it was the vet ER. And yes, it was a Sunday night. Talk about another hit to the pocketbook. Long story short, he had to have surgery. But we're still not sure exactly what's wrong with him. All we do know is that his intestines were "accordian - like" where they should have been straight. So, the vet went in and straightened them and thought he would find something stuck in there. Nope. I think we just got a defective cat.
Seriously, he could have just irritated his tummy with the plants, he could have Inflammatory Bowel Disease, or he could have parasites, or he really could have just been defective! Time will tell. But we DO know that he is a much, much happier kitty and is getting better every day. He has about 20 staples (he's just like his mommy!) that are healing nicely. He's eating, keeping it down, getting frisky, and using his box like he should. The problem now is that he thinks that just because the first 3 or 4 days after surgery he had to have a bland diet of cooked salmon and chicken, he should be eating that all the time. It's a battle of the wills here in the Siminski household. Just tonight he decided that his regular food IS good enough after all.
You know, it's funny. Both Kevin and I commented on how stressful Clyde's surgery was for both of us. We've been through so much this year, and you would think that this wouldn't be a big deal. The same thing came up when I was talking to one of my friends this summer. She was telling me about her daily struggles, and then commented, "Well, it's not as bad as what you're going through and I feel guilty for talking about it when you've got so much stuff going on."
But what I've come to realize is that just because something doesn't seem "as bad as" something else, doesn't mean that it's any less stressful! What my friend was going through - that was real life, and that was HER life. And it IS big deal, no matter how big or small the issues are.
I can't really articulate clearly what I'm trying to say, but we've all got our crosses to bear every day. It could be a brain tumor, a sick pet, a broken heart, a child that insists on only eating chicken fingers and corn, a bad cold, a sore back. One of my new perspectives this year is that when someone pisses me off, or makes me sad, or whatever, I just try to remember the scenarios above and have a little more compassion and understanding.
Sunday, November 1, 2009
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...
Monday, October 19, 2009
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.
Wednesday, September 30, 2009
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!
Wednesday, September 9, 2009
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.
Wednesday, August 26, 2009
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.