Thursday, May 28, 2009

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!

Thursday, May 21, 2009

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!

Monday, May 18, 2009

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.  

Wednesday, May 13, 2009

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... 


Saturday, May 9, 2009


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!

Friday, May 8, 2009


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!!

Friday, May 1, 2009

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.