Major Milestones

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.

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!

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.

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.

My thanks

Kevin here! Who knew what a ride we were in for. This incredible journey began on January 16th, 2009 and a major chapter of the book closed on July 10th, 2009. Jenny completed her final treatment at the Midwest Proton Radiotherapy Institute (MPRI) on Friday! Her first treatment was on May 14, 2009. She had a total of 38 fractionated proton beam treatments. Her total dose was 68.40 cge's. While I could not take her down for every treatment, I was there in spirit cheering her on everyday. My mother-in-law, father-in-law, Father, great friends Laura and Paul Avgerinos all helped with the daily transportation. I could not be more thankful for all of the help!

But really, my thanks goes out to all of the wonderful folks at MPRI. In the picture above is a small portion of her treatment team. If I could have taken a picture of everyone I would have but they were helping others in need of their special care! These folks are the true hero's, they make all of the difference in the world. My wife would tell me stories every evening about her team and what was new that day. Her physician at MPRI, Dr. Allan Thornton (in the tie), is a true pioneer and a gifted physician. His research on the use of proton therapy has undoubtably touched countless patients and the impact of his research will live on for generations. But the real hero's are the radiation tech's and the nurses that handle the day to day care at MPRI. They are all saints in my book! They touch the life's of so many each and every day.

So now begins the next phase of this journey, we are not sure what we are going to do with the blog but we have a few ideas! Don't worry, it's not going away! Thank you everyone for your thoughts and prayers throughout this entire ordeal!

Kevin

The Final Countdown

One treatment left. No tears shed for a couple of days now. I'm actually totally stoked for tomorrow!

We'll post some celebration pics tomorrow or Saturday at the latest.

Vacuuming the Plants

First things first, not done with the treatments yet! Friday, July 10 should be the day. Since Kevin wrote the previous entry, I had to take a couple of extra days off to help settle down swelling. As you know, that didn't work. And I've been a hot, steroid mess since then.

Last Sunday and Monday were great. I got lots of stuff done. By Tuesday (one week ago today), things were going downhill fast. By Wednesday, after a nightmare, surreal trippy ride to Bloomington with 3 - yes, 3, of my family members, I was a basket case. Too much conversation. Too much stress. Too much stimulation. Too much pre 4th of July traffic.

After showing up at MPRI that day at my wits end, I was tapered down from the Decadron a notch. And we were given strict instructions for the rest of my visits - 1 patient, 1 driver. That's it.

That taper went well for about a day, until I got into the cleaning frenzy mode over the holiday weekend. And anxiety. And more anxiety. I was washing windows inside and out, cleaning out crevices with with the handheld vacuum. Cleaning behind the dusty TV. I was even giving the plants a vacuuming! As Kevin said, "you are exhausting me". (Poor Kevin, if only I was this clean all the time!)

So, I went to MPRI yesterday waving the white flag, big time!! Went down again on the 'roids and have something that might help calm me down. It hasn't so far, but with the extra drop with the 'roid dosage, I should be a little more even keeled...maybe...hopefully??

I should be happy for this week, but I just want to get out of there with at least a shred of dignity....or at least no more teardrops when they put that damn mask over my face. It's just frustrating to get this far, and then to crumble at the end all because of some stupid little pill.

I am determined to go out right for the last 4 treatments...with a smile on my face. Cause that's how it SHOULD BE!!!!!!

Check back in the next couple of days. As I start to realize how close I am to being done, I'm going to be in a much better - and funnier - place. After all, it's not like a have a huge tumor in my head anymore! I mean geez, Jen, get a grip!!!

I hope that everyone had a fabulous 4th of July!!

Open Letter to Decadron Part II

Dear Decadron,

I knew I'd see you again, you hulking steroid, you. After being in tears twice last week at restaurants because the noise was overwhelming, I knew I was in trouble. Then, after being in tears trying to arrange an unexpected MRI (and drivers down to Bloomington) on Thursday, I really knew I was in trouble. It was just too much for me to handle. And those who know me know that definitely NOT how I am.

Then the headaches really kicked in hard. And I broke down and called MPRI. Now that I started taking you yesterday, here I am with headaches that are gone. But replacing them will be bone crushing aches from my back to the bottom of my heal. And night schweats. And then the dreaded decadron withdrawal when this is all said and done.

I was wondering how I was going to make it through the next 8 treatments (I'm thisclose to being done!) without you, but I was going to try. So instead of wanting to take my time closing the deal with the proton beam to help manage my swelling, I'm now anxious, anxious to be done with you and the radiation.

Atypical meningioma - from 6-8 weeks out of work to going on 5 months!

My Brain is Fried

Well, not literally of course. But I am on a 'break' for 4 days because of bad brain behavior.

Yesterday, I had a chat with Dr. Thornton at MPRI. I had been noticing some irritating symptoms last week. Numbness in my left leg from the top of the thigh all the way down my foot, in my left arm, and general crankiness (what, me?!) and a feeling of just not feeling right, like I'm getting the flu.

On Monday night, I had another one of those terrifying episodes where I thought I was going to suffocate in my sleep. Needless to say, I was not pleased and had a feeling I knew where this was headed. I also told him that I even had some numbing episodes on the left side of my back.

He then proceeded to totally geek out (he was so excited, bless his heart!) about the cortical homunculus. I add the Wikipedia link here because it is really cool. And now I'm totally geeked about it. It's basically a graphical depiction of the body within the brain. All my symptoms correspond pretty close to this picture, considering my tumor is on the top half of the brain. Check out the link - it's pretty cool! It also explains why I still haven't gotten sensation back on my left index finger.

ANYWAY, bottom line is that I'm experiencing some swelling in the brain. It's totally expected at this point in time during treatment. So, we've decided that I'm taking the next 4 DAYS off! Normally, I would be pretty bummed, but I know that I need this time off. I just never recovered after last weekend, and considering I slept 12 hours last night, having some time off sounds like pure bliss.

When I go back on Monday, Dr. T, along with Dr. Henderson, will have figured out the new fields. YES, this means that not only will I have had a break, my treatment area will be narrowed down for the last part of treatments. This should also make my brain happy. We're still gonna try to get 38 total treatments in, but it might take a little longer than expected. Which at this stage is just a-ok with me.

The countdown... Monday July 6!

Kevin here...

Folks the final countdown is on! Jenny finished up here 27th treatment today at MPRI. Her Doctors finalized her final treatment count and she only has 11 more treatments (38 treatments, total dosing of 68 CGE's). Her last treatment will be Monday July 6. MPRI is taking their holiday on July 3rd, so she will make up that treatment on Sunday July 5th with one last treatment on Monday the 6th. I can't say enough about the professionalism and compassion the folks at MPRI provide. They are truly a wonderful gift here in the State of Indiana and the Midwest. We are truly fortunate to have access to this type of treatment protocol. I have not been able to go down during the week for her treatments but Jenny always comments on the therapy team and the fabulous job they do day in and day out.

It's hard to believe that this entire ordeal started over five months ago but the end is in sight! I can honestly say this is the best I have seen Jenny feel in over a year. The changes were very subtle but her friend definitely made a big impact on her well being. I am just glad to see the spring returning to her step bit by bit every day!

Take care Friends...

Kevin

One More View

Here's a closer view. It looks greasy because I am putting vitamin E oil to help with the tenderness and pain. At this point in time, nothing really helps all that much. You can see closer towards the front one of the spots where I will probably permanently lose some hair. It's a small patch right now, but it's getting really burned. (Or at least it feels that way.)

You can also see the scar where they cut the skull for the burr hole to drain the hematoma. It's about an inch or so above the ear. I can actually FEEL the round hole where they drained it. It's awesome!

If you look closely at the very, very top of my scalp, you can see part of the scar from the original surgery that curves along the entire head.

No Comb-Over Could Fix This

It's the end of year 32 for Jenny. I'm turning 33 tomorrow! No better way to celebrate than by posting the latest and greatest picture for your viewing pleasure. It's a pretty sweet 'do, isn't it!?

Note the redness and the precise line of where the hair loss starts and ends. The loss curves around my ear, but I still have some hair left at the bottom. That means I can wear a beret and you can't really tell that I have lost any hair at all.

Of course, hats aren't as comfy as the silk scarves that I have. I like to wear the scarves sometimes because then people smile at me more...they feel bad for me, I guess! Kevin thinks I'm weird, but is it really so wrong to like it when people are smiling at you all the time (and holding doors open for you and stuff)?! Hey, I might as well enjoy the 'perks' of losing my hair while I can!

Hair loss and Soy

Here's the sweetness that is my hair!  Yep, I've lost enough that I'm walking around with a scarf on all the time in public.  

Onto a different topic:

So, in addition to NO EXOGENOUS HORMONES for ever and ever (including anything for menopause, etc.), it has been recommended that I AVOID SOY.  I have been doing this as best I can for some time now, as I've read that soy can have hormonal effects on the body.  I THINK it has something to do with being antiestrogenic.  When you have progesterone receptors, soy could actually feed the kind of tumor I had.  At least I think that's the logic... anyway, I just know that soy can screw with your hormones.  

I have been leery of soy for some time, and having confirmation of this from a medical professional is all that I need to stay away from soy as best I can!  There's still lots of debate in the medical world, but if the Medical Director at MPRI tells me to stay away from soy, you can bet there's a reason for it.

The problem is that soy is, unfortunately, in about everything.  Try finding a multi vitamin without soy.  Try finding a protein bar without soy.  TRY FINDING CHICKEN OR BEEF WITHOUT SOY AS A COMPONENT OF ANIMAL FEED (along with corn).  That also means cow dairy like milk, cheese, etc. -  that also has soy in it based on the feed of the cow.  And 'organic' or no hormones added doesn't cut it.  I found that out the hard way at Trader Joe's today- the T.J. branded-chicken isn't fed antibiotics, but it states clearly on the package that the chicken is fed a diet of corn and soy.  So disappointing.

(I know it's impossible to avoid soy all the time, so if you see me eating a chicken burrito from Qdoba, don't hassle me.  My body type demands that I eat meat!  And trust me, I'll be beating myself up the whole time I'm eating it.  If I can at least manage my soy intake when I cook meals at home, that will be better than nothing.)

And people wonder why girls are getting their periods at 9 years of age?!  Seriously, this is a real concern.  It's going to take a lot of effort to try and find meats that are from grass fed animals.  Hell, I'll even take some that have corn as a main component of their diet.  But while some people have corn allergies, the insidious thing about soy is the (increasingly known) effects on hormones.  And you know who it's hurting the most?  Women and girls!  

The Honeymoon is Over

It's happening.  The dreaded hair loss.  My only conciliation is that I have been assured that most of the hair will grow back, except for a small patch where all three of the beams converge. Right now, though, the hair loss basically covers half of my head.  Seriously.  It is tender, sore and very itchy.

But, I can deal with that, as long as at least some of it comes back!

No News is Good News

I just realized that it has been a whole week without a new post.  That is actually good - no new drama!  Treatments are going well.  Kevin just noticed tonight that I'm starting to get just a little redness on the right side of my face.   Things will probably start to get uncomfortable in the next couple of days, so I'm just trying to appreciate feeling, well, not too bad at the moment.

My days are pretty much the same.  Try to get up at a decent hour.  Get some food into my stomach.  Then go down to MPRI.  My appointments are usually somewhere between 11 and 1, although that can vary slightly.  Then get something for lunch.  Then get back home mid-afternoon and take a nap.  After dinner I try and get some work done on the computer/check email, etc.  But I've noticed that I really can't be on the computer much since starting treatments because it gives me a headache.  So all of you who have written me emails...thank you!  I have read them all and will get back to you as soon as I can!

MPRI Stories

The Midwest Proton Radiotherapy Institute sees all kinds of patients.  Here are a few of their stories (cue the Law & Order intro):

1. There is a little boy that is being treated there.  He's about 6 and is accompanied every day by his little 4 year old brother, mom, and his grandmother.  I'm not sure what he is being treated for, but he's cute as a button.  He has an IV line in his arm, because he has to have some sort of sedation every single treatment.  As Dr. Johnstone said to us, the little boys are especially squirmy.  I think he tried having treatments done for a few days without the sedation, but that obviously didn't last long because the IV is back in his arm.

2.  There is a little girl - probably younger than a year old - that was there being treated the first day I was there.  When she was done with treatment (and still very, very groggy), the MPRI nurse took her out to the waiting room to see her mom, and the little girl didn't want to leave the nurse.  That made me feel really bad for her mom.  But then she had a bottle and calmed down.

The little kids that are being treated there are all so cute and good.  MPRI has to have an anesthesiologist there practically every day because more and more kids are being treated there, and they obviously need to be sedated.  I can't imagine having to be sedated every treatment day and how hard that is on those tiny little bodies.

3.  There are a ton of older men - and their prostates - being treated there.  I think that's one of MPRI's bread and butter treatments.  There are a ton of them walking around there!

The treatments continue to go well, but I know that the tiredness is starting to really creep in.  

As I said before, all the technicians there are great.  Everyone is so very, very nice.  There are about 5-6 technicians for each treatment room.  And all of them are always running around doing something during the treatment!  Unfortunately, I have my eyes closed during the treatment, so I don't know exactly what they are doing, but they are busy!

Shadow of Doubt

"This is all just such bullshit," I said to Kevin last night.

"What's wrong?" he replied, thinking that something else wrong was going on with me.

"Nothing, except for going through all this.  It's just such a pain.  I never thought I'd be having to do a form of radiation when we first discovered the tumor in January.  Never crossed my mind.

I had my third treatment today, and it went smoothly.  The second treatment I had took forever because they couldn't get me lined up correctly.  I was in that damn mask for about 45 minutes.  And it was annoying.

Everyone at MPRI is fantastic, efficient, and compassionate.  It's too bad that I look forward to the day that I don't have to see them again.  3 treatments down.  30 to go.  

I'm counting down the days until I lose my hair permanently.  Then I'm counting down the days until I'm done.  The treatments themselves aren't bad, but about 45 minutes after, I start to get a mild headache.  And a huge patch on my right side feels like it's getting sunburned.  And it's only going to get worse.  It's going to get really, really uncomfortable.  And I still don't know exactly where the hair loss will occur.  I got three different answers from three different people.  But if the burning on my scalp is any indication, it will probably be right above my right ear.

That's makes me question whether I should have done proton beam right away or waited out to see what happens.  But with a 60% chance of reccurance, I know that it's the right thing to do.  At least that's what I'm telling myself today.  

Beam me up Scotty!

So, for you geeks out there- have you ever tried the old trick of holding a fluorescent light tube next to an electric source and the tube auto-magically lights up.  Well, after tomorrow when Jenny walks past the light bulb section in Home depot she will have her own personal spotlights... just like the rock star she is!! You guessed it, she is FINALLY beginning her proton therapy tomorrow at 1:00pm.  She is scheduled for 33 sessions with at CGE (cobalt gray equivalent) of 59.4 (this is how they measure how much radiation will be delivered to the tumor bed). The doctors assured us that she won't beradioactive nor will she glow but I'm not convinced.  I think I will make sure I keep a fluorescent tube close by as a warning light! In all seriousness, tomorrow is a big day and there is finally a light at the end of the tunnel.  Today, they did there simulation run and tested all of the computer programs that position her in the Gantry in front of the Proton beam injector.  Jan (Jenny's mother) and I were there watching all of the activites until they ran us out to take the X-rays to verify the positioning.  Everything checked out and she is locked and loaded for treatment.  In the picture above, she is laying on the treatment table and she is all buckled up and she is wearing her hannibal lecter mask (the white thing wrapped around her head).  I have some more pictures that I will post in the next couple of days.  So stay tuned... 

Kevin

Ghostbusters

When it's 9 PM and your husband discovers yellowish/greenish pus behind your ear, who ya gonna call?  Seriously, I've got so many different docs, it's sometimes hard to know.  

Do you call the neurosurgeon in Bloomington?  The one in Indy?  The Primary Care Physician? Or the Radiation Oncologist you met with today?

This was my scenario last night after my drama filled day.

Since it was so late, and I really didn't think this was totally urgent, I decided to email my most responsive doc - Dr. Henderson.  Who answered my email before midnight!

Long story short - I've probably got a small infection at the site of the proton beam marker on my right side ear. Even this morning, my lymph node back there is swollen.  And it still hurts.

Gotta go pick up some antibiotics and will be checked on Wednesday down in the Bloomington neurosurgeon office.  But it could explain my headaches!

Just another day post-meningioma surgery and pre-proton therapy!  

Seriously, everyone should feel bad for my husband, having to put up with all this!

DRAMA Queen

No, it's not Kevin!  

Last Friday, I had a small seizure.  Monday I had another weird seizure.  In my dream, I couldn't move my left arm or leg.  Couldn't see out of my left eye.  I was banging on a couch to let the other people in the room know that I was having a seizure, but nothing would come out.  I then woke up immediately.

I then proceeded to wake up Kevin, of course, because with all my other seizures, I wouldn't wake up.  I would just remember having a dream that I felt like I was being suffocated to death the next morning.  So, compared to those seizures, this one was actually better.  But it was still a different type of seizure, if you know what I mean.  So I thought it would be a good idea to call the neurologist that morning.  I did that.

And waited.

And waited.

Then headaches returned this week.  And the swooshing in my ears.  Which in the past meant one of two things:

1. A BFT (hint: the B stands for Big and the T stands for Tumor); or

2. A hematoma

Long story short, I sort of freaked out this morning.  And tried calling the neuro again.  Then I called my buddy Dr. Henderson, who is overseeing my proton therapy plan.  I DO NOT want anything to get in the way of me starting the proton treatment next week.  I was terrified that I was getting another hematoma.

Dr. H got me in right away, did a CT scan.  

GOOD NEWS:  All looks well in the noggin.  He consulted with the neuro, and they really don't know why I'm having headaches or swooshing.  Could be that my brain is irritated.  Could be that I'm still having small seizures.  Could be that the meds are causing it.  Could be that I'm crazy.  Whatever.  I'm still on track for next week!

GOOD NEWS/BAD NEWS: Dr. H did give me a nice overview of the proton treatment plan.  It will be shorter than I had thought (only 33 treatments!)  But he also included a small little nugget of information:  I will probably PERMANENTLY LOSE MY HAIR on a good portion of my right side.  

So, Kevin's wish for me to keep my short hair is pretty much squashed.  I should be able to cover the bald spot with a haircut that's at least shoulder-length, and parted on the left side.

I go from being out of work from 6-8 weeks.  To learning that my benign tumor is atypical. Which will require radiation so it doesn't regrow back.  To having emergency surgery for an epidural hematoma.  To learning that means I'll be out of commission for at least 5 months.  To learning that I'll lose hair permanently.  

Are you KIDDING ME?!  What a crazy journey!!

My lover man

Clyde is the litter mate of Chloe.  And this picture shows just how sweet he is.  I just got back from a few hours visiting my colleagues, and when I got back home, Clyde jumped in my lap straight away.  

Not only that, but he LOVES to tuck his little head under my chin and just cuddle and cuddle.  He sometimes stands right on my chest so that his head is above mine, and then rub his head all over my face (yes, Clyde, you own me).  Of course I try to keep him away from my wounds, but it can be hard.

Clyde also has a strange habit.  Whenever he is content and happy, he drools.  And I mean he drools a lot!  It's pretty gross, but when he does it I know he is just the happiest kitty in the world.  He's such a good boy and he makes me smile when I get frustrated at this whole long, drawn out ordeal.

My buds

The last month, especially, has been kinda rough. But besides my husband, the other creatures that have been constant companions are my sweet kitties.  

I woke up this week to the 'girls' as me and Kevin call them, snuggled up together next to me on the bed.  They don't always get along, but there are moments where they don't just tolerate each other, but perhaps enjoy each others' company.

Chloe is making the fierce face (I just happened to catch her in a full stretch and yawn). Simona (or "Mona" as we tend to call her) is the other cutie.  Don't tell Chloe or her brother, Clyde, but I have such a soft spot for Mona since she is our rescue kitty.

Mona literally follows me all around the house and is always the first one to greet us when we come in from outside.  Since they are all indoor kitties, though, they are all 3 pretty attached to me and Kevin and are always in the same room as us, even though they have a big house to roam around. 

They are constant and wonderful companions as I continue to heal.  

Seizures again

Okay, I'm proud to report that I'm not bat shit crazy.  I talked with my neurologist just now and he confirmed that he thought I am probably having focal seizures.  He wasn't surprised this happened after the hematoma.  

So, I'm going to be adding in a new medicine and then after I get up to the full dose on that, tapering off of Keppra.  

We chose to do this instead of just increasing the dose of Keppra because of mood issues that can be associated with K.  He asked me if I've had any mood changes or depression.  That's really a trick question for someone who's had brain surgery!!  

I said, "well, yes, I definitely have good days and bad days and I do get blue, but it's hard to know if it's just from everything I've been through these last couple of months or the medicine." In hindsight, my crying outburst in Dr. Shaprio's office could have been a clue!  :-)

So, we both figured it wouldn't be a bad idea to try the new med and see how I do on it.

I just hope that it stops my terrifying dreams where I can't breathe, because it's gotten to the point where I'm afraid of sleeping at night.  Seizures can suck it.

AAK (All About Kevin) Post

So, even in this craptastik economy, my husband found himself a new job!  I haven't written this earlier because I'm so paranoid about these things, but since it's his first day, I thought it safe to write about!  

I'm so proud of him!!!!  He's going to be managing the product operations group for a cool company called ExactTarget.  You know those emails you get from the big retailers?  Well, chances are that ExactTarget manages it and works with the companies to maximize their marketing efforts.

So, help me congratulate Kevin!

More Seizures??

Since my 2nd surgery, I've had some interesting symptoms pop up:

• Terrifying dreams in which I cannot breathe - like I'm having a nasty, nasty asthma attack.  I don't wake up during these dreams (I wish that I would), but all I know is that they are TERRIFYING.  I thought it was either my allergies acting up or anxiety from the last couple of months (both are very plausable explanations!)
• My tremor in my left hand has returned noticeably.
• My right eye has been twitching on and off most days.
• I smell a popcorn smell on and off all day even when there is no popcorn around anywhere.

I told Dr. Shaprio about the tremor and twitching and really didn't get a response.  I just thought that it's part of the healing process.  Which, to Dr. Shapiro's defense, is probably pretty normal healing stuff.

But taken together with the other symptoms, I really think that I'm having partial seizures, based on some research that I've done. I've got a call into the neurologist, Dr. Snook, to see what's going on and to see if we can resolve these issues.

YET ANOTHER REASON WHY PATIENTS MUST MANAGE THEIR CARE.  When you know something isn't right, don't give up.  And I want to get this figured out before the proton therapy starts.

Tiredness Part III

Yep, old man groggy is still with me.  Can't shake it.  I'm also out of breath in like 2 seconds.  My head is healing well from the marker surgery, but it's still sore.  Now my left side of my head feels numb.  And it's like, "hey, I didn't have a tumor, why are you infiltrating me now?"  With proton therapy, you're part of the team now, left side of brain!

I've noticed that my tremble on my left side is coming back slightly.  That's kinda annoying.  But the pressure in my ears continues to do really well.  I'm constantly hearing popping noises and weird things at night when I go to bed.  

More poking, prodding and radiation!

Kevin and I got back from Bloomington this afternoon.  Yesterday was a fun-filled day of bloodwork, x-rays and yet another MRI (with dye contrast) in preparation for the 'fiducial' placement operation today.

Instead of having the usual external 'tattoo' on the skin that goes along with radiation (indicating where the radiation beam is focused), proton therapy requires fiducials - a.k.a. markers or bb's (as in bb gun) - to even more precisely focus the beams.  These fiducials are placed on the skull and are about as big as a pin head.  I will have them for the rest of my life. They are MRI compatible and I shouldn't set off any alarms at the airport.  

So, yes, I had to go under general anesthesia again today.  3 times in 2 1/2 months.  I hope this is the last time ever!  I'm exhausted.

I was also lucky enough to have yet another CT scan (with dye contrast) after the surgery today and even more x-rays.  I think this officially puts me in the radioactive category!!  It's kind of scary.  I've had 4 MRIs since January 09 and 7 CT scans since December 08.  Most of them included the dye contrast, too.

The picture above shows 2 fiducial placements.  I have 4 all together.  While not a big deal, they are kind of sore, and in the most inconvenient places ever.  One is right behind my right ear exactly where my glasses lay.  Niiice.  And they used my previous scar from the first surgery to insert the one smack dab in the middle of my forehead.  Double niiice.  

The others are on my right side just outside the skull flap (the part of my skull that they removed in the first surgery), and the last one is actually on the left side of my skull farther above the ear and back just a little bit.

But the GREAT NEWS is that I am on closer to getting back to normal and I am just excited to get the treatments started.  We're still looking at the initial meeting with the Doc down at MPRI on May 13, with the first official treatment on May 14th.

Progress!

Moving forward with original MPRI schedule this week.  It's kinda been a cluster trying to get all the docs on the same page, but it FINALLY happened today, I think in large part to Dr. Mark Henderson.  

Wednesday, Kevin and I will go down to meet the neuro team who will literally put the screws in my head.  Then I will meet the MPRI team who will treat me.  Good times.  Just hoping for no more complications.  

Still looking at first treatment date of 5.13.  Let's hope these next 2 1/2 months fly by.  I am so ready to be completely done with this drama.

Will post more from Bloomington on Wednesday/Thursday.

Still Waiting

Met with Dr. Shapiro yesterday for follow up.  He took out my staples.  Told me it wouldn't hurt - and he lied.  Has he ever had a bunch of stitches or staples taken out of his head?!  Yesterday's stitches removal hurt almost as bad as the staples!!  My head is so sensitive!

He took another CT scan yesterday to see what was going on.  Thought I would hear back from his office today, but I haven't yet.  Of course, we got the CT on CD (like that one?!) and we looked at it yesterday.  From our non-professional view, everything looks pretty good.  My brain looks like it has totally expanded back into place.  Amazing!  Now, if I can just figure out why the heartbeat and windstorm in my ear is still raging....

He's thinking that I might have to delay the start of proton treatment and was going to consult with Dr. Johnstone down at MPRI.  I will be bummed if I have to wait even longer.  Ugh.

Good news is that my appetite seems to be returning and the numbness on my left side seems to be subsiding.  But like the weather in Indiana, just wait and it will change...(can you tell these last 3 months have made me a little cynical?)

I took an awesome 2 1/2 hour nap today.  But I did manage to get out in my garden for about a half hour to pull some weeds!  Making progress.

Let's hope I hear back from Dr. Shapiro's office tomorrow!

Infection?

Oh, one more thing I forgot to add.  I got the dreaded phone call from Dr. Shapiro's assistant on Thursday.  Apparently, I had a 'late growth' on the culture that was taken when they drained the hematoma.  Dr. Shaprio seems to think that it could have been contamination.  And I'm not sure what day after surgery this 'growth' appeared.  Usually they only culture it for 5 days...so not sure if this was on the 5th or 6th day after surgery.

I'm now back on antibiotics for 6 days.  I'll find out from Dr. Shapiro on Wednesday what to do next.  Mentally, I'm preparing for having to have a pic line for a month.  And hoping that's not the case.  Definitely a big bummer.

Proton Therapy Schedule

Finally heard from MPRI!  Here's the deal:

Wednesday, April 22

Meet with neurologist in Bloomington and pre-op bloodwork at Bloomington Hospital.

Meet at MPRI so they can make the mask that needs to be custom-fit for treatments.  Meet with care team.

Thursday, April 23

Surgery (yes, another surgery!) to implant markers that will help guide proton beams.

Another MPRI meeting for more bloodwork and mask stuff (I think!)

Wednesday, May 13

First proton beam treatment and meeting with Dr. Johnstone, who will oversee my treatment

Quick update

Finally starting to feel better after the second surgery.  I managed to clean out my work email inbox and do a little work for a couple of hours today.  It was nice, but it did wipe me out!  

I continue to be extremely tired, and my appetite is awful.  I feel like I've eaten a 5 course meal all the time.  Which makes it difficult to even shove anything down my throat.  Luckily, yesterday I could actually eat quite a lot in comparison to the past week.  Maybe that was my mom's great Easter cooking!  

I'm also feeling numbness and pain in my left arm and left heel.  It's strange, but probably just part of the healing.  It's something I'll ask Dr. Shaprio when I see him on Wednesday.  I'm getting my stitches out then!

Public Service Announcement

The hole in the middle of my skull is the Burr Hole they made to drain the hematoma.  The string coming from it is part of the drain that they kept in for about 24 hours to make sure they got out all the fluid.

My hematoma was the exact same kind as the one Natasha Richardson had: an epidural hematoma.  Only mine just had fluid and presumably hers had blood.  It develops in between the dura (the protective layer surrounding the brain) and the skull.  They think mine developed just because my brain had so much space to fill and didn't fill the space as quickly as it needed to, and so fluid ended up building up.   And I'm glad that it wasn't a subdural hematoma, which develops between the brain and the dura.  That would have meant that they would have had to go through the dura, which would have presumably just made the surgery that much more traumatic.  I'll take whatever luck I can get at this point in time.

But....had I not gone to the ER last Monday night and gotten a CT Scan, Dr. Shapiro wouldn't have known by the MRI I had on Wednesday (about 36 hours later) that the fluid build-up had almost doubled within that short period of time.  That's why he wanted to operate within 24 to 48 hours.  Time really was of the essence.

So, please, always go to the ER if you are barfing like crazy and have a headache, especially if you've bumped your head recently!  I felt stupid at first, but boy, am I glad I went!

Frustration

I am sick of laying on my left side.  I can't go outside because it's so windy and cold and that makes my sutures hurt.  And I'm still trying to get everything sorted out at MPRI with this latest delay.  At this rate, I'll be lucky to have the proton therapy done by the end of summer.

This latest setback really has me bummed out.  I just wish it was over.  I'm beyond frustrated and I just want my normal life back.  

When I was in the hospital, I did get to reconnect with one of my old nurses, Jason, when I was in the hospital.  He was my first nurse and helped me through that seizure I had in the room late in the day of my first surgery.  This time, when I kept crying to the neuro residents and to Dr. Shapiro about how much pain I was in after the surgery (and I really WAS crying), he was very comforting and patient with me.  He reminded me that having two surgeries so close together is very tough.  Even Dr. Shapiro was trying to comfort me.  

Kevin was his usual awesome self through this latest ordeal.  And Kevin's dad, Eddie, was also awesome.  He came up to help take care of the kitties (and Kevin).  And he was the perfect visitor right after surgery!  

When I was transferred out of the neuro ICU and into the regular ward, I had 3 roomates in a 24 hour period.  One older lady had just been diagnosed with pancreatic cancer, and was going to have surgery on April 27th.  Another just had half her pancreas taken out and was in a lot of pain - and in for a long recovery.  I guess compared to these two, I shouldn't complain...

Back Home Again!

Hey everyone,

It's me again.  I'm doing really well and feeling better than I have in weeks.  I little fluid on the brain never does a body good!  I'll post more about this hospital experience in the next day or so.

Jenny

Hospitals can suck it....

Finally going home with my wife.







Regards,

Kevin Siminski

(Sent via a Blackberry device)

For better or worse, in sickness and in health.....

Anyone seen the mug shot of the sham-wow guy? Note the striking resemblance.



Regards,
Kevin Siminski
(Sent via a Blackberry device)

13 round box match

Jenny's record 2-0. The first bout while much longer was an easier recovery. This bout has taken its toll. As you can see she is much more swollen around her right eye. But at least no one took a bite of her ear!

She is feeling much better this morning. Dr shapiro just stopped by and said we are just waiting to hear from the lab on the culture report. There has not been any sign -yet- of infection in the culture samples and if they come back clean in the next few hours jenny will be discharged. Dr shapiro indicated that if the cultures remain negative for 48 hours they will usually stay negative..... Fingers are crossed!



Regards,
Kevin Siminski
(Sent via a Blackberry device)

Ultimate bed-head

Jenny is doing MUCH better now. She ate some oatmeal and she took a short walk around the ward!


Regards,
Kevin Siminski
(Sent via a Blackberry device)

Who knew?

It seems that when you get a small hole drilled in your skull the post surgery recovery is worse than getting half your skull removed! Jenny feels a lot worse than she did after her first surgery. I suspect the fact that she is not loaded up with steroids to control swelling etc etc makes her feel much worse.
While she feels worse now, her ct scan however confirmed that the fluid build up was completely drained- so everything looks good up top! The cultures that are being performed on the fluid will probably take another 12 hours before they can see if there is an active infection. Fingers crossed that they turn up negative.

I think they are going to move her out of the neuro icu later this morning. I send out an update later today.



Regards,
Kevin Siminski
(Sent via a Blackberry device)

Very groggy but okay...

Hell I'm tired as well...

Regards,
Kevin Siminski
(Sent via a Blackberry device)

Old stomping grounds

Well she is back in her old ward from the last visit. She is very groggy and in a little more pain compared to her last visit to the neuro-ward. They have a little drain placed under her dura to relieve any fluid that might develop. Nurses are doing a great job as usual!



Regards,
Kevin Siminski
(Sent via a Blackberry device)

Surgery went well

Just spoke with dr shapiro and they just had to place a small burr hole in her skull to drain the fluid. It wasn't all blood but more of a fluid mix. They sent it off the fluid for a culture to see if there is an active infection. If there is she will have to have a pic line inserted and then we will administer antibotics at home for several weeks.

Regards,
Kevin Siminski
(Sent via a Blackberry device)

Out of surgery..

Should be hearing from the doctor shortly. She went under around 1130 and they just finished up.

Regards,
Kevin Siminski
(Sent via a Blackberry device)

Hello members of the jenny fan club

Well the clock is ticking once again. Jenny was just taken back to the OR. Her spirits were high and she was smiling. More updates to come as I get them.



Regards,
Kevin Siminski
(Sent via a Blackberry device)

Funny Story

Here's a bit of humor for everyone:

After learning from the Wizard that I was going to have to have this hematoma drained, I dared to ask,

"So, is this, like, an outpatient or inpatient procedure?"

To which the Wizard replied, while looking at me over his glasses in a fatherly and definitive manner,

"It's an inpatient procedure."

I then realized my stupidness, because given that he messes with brains and skulls all day long, I doubt that any "procedure" that he performs is outpatient!

A bump in the road

Well, we have hit a small bump in the road.  As previously mentioned, Jenny has been feeling pretty fragile over the last seven days- wind in the ear, pressure buildup, headaches. Ohh.. did I mention puking?  

Yeah, so on Monday we made a trip to the ER around 10pm because she could not keep anything down.  After hearing all of the stuff about Natasha Richardson we decided it would wise to make a trip down to the ER.  They did a head CT and did not find anything conclusive, just a little 'fluid' that they did not seem to be concerned about.  She did make a fresh vegetable juice earlier in the evening with some questionable greens! They did not smell too good... so we thought maybe a touch of food poisoning  might have been the culprit! So they gave her some medicine for the up-chucking and she felt much better and we were back home by 130am!

This morning (April 1) we already had a MRI scheduled plus a meeting with her neurosurgeon. Dr. Shapiro indicated that  in comparing the CT scan from Monday and the MRI from this morning it looked like the fluid buildup had grown.  Guess what that means? Another surgery!  So yes, Jenny is scheduled for another surgery Thursday (tomorrow) morning to drain the hematoma that has formed.  You can see it in the MRI image above.  Dr. Shapiro said that it would take him about 15 minutes to do the procedure but we should plan on about an hour from start to finish.  Unfortunately she will probably be in the hospital again for a day or two.  We asked him if this was normal and he indicated that it was "abnormal" but given the size of the tumor he was not shocked that this happened.  This should help her feel much better!  Anyways, we have to be down at the hospital by 9am with surgery scheduled for 11am.  Of course this setback will delay the proton therapy treatments but hopefully it will help with Jenny's overall well-being.

I will send out an update tomorrow as I find out more. 

The Indianapolis "hum"

So, if you're not from the area, the Indianapolis "hum" is a reference to our neighbors up north in Kokomo Indiana.  For several years, natives of K-town were convinced there was some sort of weird, low frequency hum that was polluting their air.  Numerous news stories were written, environmental studies were conducted, etc. etc.  Ultimately, there was never any evidence that this "hum" heard by so many even existing.  But, I'm convinced that it moved to Indy last week.  On Friday around 9am, this humming noise was quite apparent to all those up here in city of Lawerence.  I was working in my home office and Jenny was still in bed.  This noise sounded like some high powered vacuum system and it was REALLY annoying.  I just knew trouble was brewing upstairs in our bed.  So we had a slight meltdown in the morning..... really it was more of a full blown meltdown thinking about it in retrospect.

Jenny has always been very sensitive to the slightest noise- clicking of the ceiling fan, water dripping, my snoring.  Anyways, around 930am she calls me up and is quite hysterical wanting to call the Lawerence township center and give them a piece of her mind!  Friday turned out to be a very "sensitive" day for Jenny.  She was pretty frail all day and exhausted.  I think everything just finally came to a head.  But we did hear some good news!  The Midwest proton radiotherapy institute did call and let us know that Jenny's insurance company has been very pleasant and the insurance arrangements for the proton therapy are being worked out. Finally some progress!

Jenny also was experiencing the "wind in the ears" again so she called her Neurosurgeons nurse and we have a follow up appointment with him on April 1st. He also ordered another MRI for the morning.  I suspect that Jenny still is experiencing some swelling in her noggin as the decadron gets worked out of her system.  She has been off the steroids for about two weeks and they do stay in your system for a little while.  Regardless, getting the MRI done on Wednesday will be good.  She would probably have to have one for the proton therapy so this is killing two birds with one stone.  We are also meeting with her GI docter to review everything.  Jenny has not been able to put on any weight over the last three/four months and meeting with the GI doctor is good step.  We both suspect that there is some sort of hormone imbalance but we need to get the scientific proof from the team of doctors.

6 weeks post-op

Still waiting to hear back from MPRI...hopefully I can start treatments soon.  I'm getting really annoyed.

Last couple of days I've been super duper tired.  I know it's only been 6 weeks, but my goodness.  Will it ever end?  

The Pacers and Cancer

So, what do these two have in common?  There's some controversy in Indianapolis about the Pacers not being able to afford their $15 million in operating expenses for Conseco Fieldhouse.  I may have all the details a little messed up, but bottom line is that there is question about whether the Pacers are going to stay in Indiana.

Cancer patients, and even 'pseudo-cancer' patients (as I like to call myself) definitely have a stake in this fight.  The new Mel and Bren Simon Cancer Center in Indy is world-class, and as a patient of this fine facility (and ancillary facilities) I'm fortunate to have some of the best researchers and multi-disciplinary teams to treat my stupid tumor.  The Simons (who own the Pacers) certainly provide much more to the city than just the sports, entertainment, and hospitality industries.  

Yes, this is tangled up in a much more complicated issue, which I won't go into.  But many in Indiana are saying "let them leave".  But if you have cancer, or have been touched by cancer, or even have 'psuedo cancer', the answer isn't always so cut and dry.

The Waiting Game

Before I update everyone, just wanted to let you know that my sister-in-law, Beth, is having surgery tomorrow.  Yes, it's been a rough 2009 for our family.  Please keep her in your thoughts and prayers!

So, I'm still waiting to hear from the Midwest Proton Therapy Institute on my schedule.  That's because we're STILL waiting to get approval from my insurance, which I'm sure is dragging their feet.  I hope that I don't have to get out the can of whoop-ass!  I want to get this started and over with ASAP.

Quick Update

Things really are getting better, and I thought I'd focus this post on all the good things I've noticed over the past couple of weeks.  

For instance, I've noticed that the numbness is totally gone from my left side except for one of my fingers!  This is awesome news.  

I can actually sleep on my right side again!  This is great news, too, because my left side was getting so achy from overuse because I love my naps and my bedtime!  I also have more sensation (for better AND for worse) on that side of my head.  Which means I can really feel the pins in my head.  (Adding this picture as a reminder of just where those stupid pins, or whatever they are called, are located.  And boy, do I feel them!)

The 'frostburn' in both of my knees is totally gone!

I still love my naps, but I don't have to take naps that are quite as long as I was even last week!

I actually went to a very gentle Yoga class (it's more of a stretching class) that was so awesome I can't even tell you.  I am very sore right now, but it's a good sore.  My neck and my shoulders were just getting so tight and sore, you have no idea, and this has helped!

Okay, I'm not really driving all that much, but I can when I need to.  However, I will confess that I did get pulled over yesterday for speeding in a school zone.  But Johnny didn't give me a ticket.  Yeah!  I will be extra careful from now on!  And continue to drive only when needed!

I should hear something back about treatment at the Midwest Proton Radiotherapy Institute very soon.  I've been reading where other meningioma patients who had traditional radiation and years later they are experiencing issues like fatigue, trouble sleeping, visual and balance issues. I'm still not thrilled with radiation, but this option I can get comfortable with.  As Dr. Henderson said the other day, without radiation or proton therapy, there's a 60% chance of recurrence with this type of tumor.  My back's against the wall, but I'll deal.  I just can't believe that I even have this option!