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.

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.  

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.