Thursday, July 23, 2009

Top Ten

Here's my top 10 list of events related to the meningioma. With 1 being the worst. This might surprise you.

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.

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.

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.

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.

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.

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.

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.

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.

Friday, July 17, 2009


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....

Saturday, July 11, 2009

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!


Thursday, July 9, 2009

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.

Tuesday, July 7, 2009

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!!