T minus 8 - T minus 6

I only have 5 more treatments after today. I hate to admit it but it's kinda bitter sweet for me. I'm glad that I'll be done with treatment but I will miss all the great people that I've gotten to know...

The valet boys...

Joe - (in the white shirt) the Troy Bolton of valet boys

Million - helping me into the car (he asked to see the photo to make sure he looked okay. I got the thumbs up), Juan (whose hair convinces me that if he played soccer, he'd be a pro), Steven (the tall red-head who was shocked that I remembered his name), Kendrick (who has the biggest, kindest smile), Luis (the newbie), and the rest...

The admissions chica - Mandy (who is just one of my favorite people ever & wasn't there for me to get her pic on Friday)

The waiting room girls...
Pam and Onesica (pronounced Oh-nessica) - soooo nice and fun to chat it up with while I'm waiting.

My nurse...
Anthony (who I really should make a camoflauge duct tape "man bag" for as a joke)

My technicians - Jason, Sheilah & Kiera (who are all so kind and helpful)

My RFF...


Stella (who I just don't have the words to express how awesome I think she is - I mean look at this photo! We're being all glamorous in front of Roli. Could she be any cooler?!)

And of course, Roli...

All these people for 25 days and then..... no more...

I feel really blessed. I've been coming to the hospital for 4 weeks but it could be so much worse. Having a brain tumor is a trial but we all have trials - yours may be going thru a divorce or having your mom pass away or having your little kid in the hospital or getting old or having your son serving in the military overseas or having to take care of your sweet wife after her stroke or getting laid off or... so MANY other things. It just makes me realize how amazing the people around me are! We all have hard stuff and get through it the best we know how.

I'm just grateful that when it comes right down to it - if there's a choice to laugh or cry - I can choose to laugh about the tumor in my head. How would I feel if you read this and just felt sorry for me?! I'd so much rather you think I'm having the adventure of a lifetime, because I am.

And despite my love for Roli, he's nothing compared to my sweetheart.



I'm so grateful that he has stood by my side throughout this whole year. It can't be easy thinking your wife is going to die for 5 months, then have her become SUPER crabby, then so exhausted that she can hardly function... I really do adore this man.

I'm really grateful to my Heavenly Father for helping me stay positive. And for blessing me with such great family & friends.

Day 13-17 (or T minus 13 to T minus 9)

I've decided that the last 2.5 weeks will be counted in T minus terms. (So day 13 was also day T minus 13.)

Pretty much T minus 13 thru T minus 11 I slept... almost all the way thru the radiation. (I did not drive myself these days, just in case you were nervous.) I'm pretty sure Jason was my technician for a couple of the days (sorry Jason, I was kinda out of it), I'm pretty sure the cd I listened to was 'Kenny G on crack' and I'm pretty sure Roli had to be rebooted. Which leads me to the question, "Just how often does Roli have to be rebooted?" Cuz I've been here for 3 weeks and he's been rebooted 3 times for me. Am I just special? I mean, Roli and I are close like that but still I wonder...

Which leads me to T minus 10... the collimators. (I didn't even have to make up a name for that to sound cool.) Roli uses 2 collimators when he gives me my treatment. He starts out with the 20 then switches out for the 30. I get the same "strength" beam but one is smaller and one is larger. They determine what size to use based on how big your tumor is and how close it is to things like the optical nerve. When Dr. Timmerman told me about my treatment he said, "Your tumor is really big. No, I mean it's pretty dang big. Did I mention that your tumor is gi-nor-mous?!" (Okay so I threw that last part in, but you get the idea.)

(The 20 is the bottom left one.)

(This is the smallest one - it's a 5. A 5 is used on little baby tumors and ones where you have to be careful with optical nerves.)

(These are the 50 and 60. Stella said they've never been used on human beings. I think that means they've been used on the occasional elephant or perhaps sasquatch. The empty white collimator holder on the right is for the 30, Roli still had it when I took the picture.)

Oh! And there actually IS a red laser that Stella could turn on when she does a treatment. If only she had done it my first treatment.

So I accidentally took this picture of Stella. But I'm sharing it because it has her super cute Strawberry Shortcake scrubs. Strawberry Shortcake has the same initials as Stella. Too cute.

T minus 9

Oh, did I mention that I have to tell Stella my name, birthday, and where she's radiating - every single day? I think it's pretty funny. But I did find out that my RFF (again, radiation friend forever) was born exactly 1 month before me?! Cool, huh?!

When we went into the room today there was someone doing research. Roli has new exciting things in store! He will be used to treat breast tumors. This is really really neat because any tumor on your chest would move up and down when you breathe. And they've figured out how he can read someone's breathing and move accordingly. It's call synchrony (I think).

It reminds me of Singing in the Rain when they see the demo of a "talking movie" and the man says, "they are synchronized together in perfect unison".)

Anywho, Roli is only like the 2nd CyberKnife ever to start treating breast tumors. I think he's the only one doing any treatment besides brain and spinal cord.

Man, I love that Roli. He's so cutting edge... so trendy... so Roli...

Day 11 & 12

Day 11

I was too tired on day 11. I mostly don't remember it.

Day 12

I'm almost half way through my radiation treatments. I guess it'll be halfway when I'm halfway through tomorrow's treatment.

I realized today that I haven't shared something that I learned during one of my first treatments. When Roli is doing my treatment, there are certain places that his laser beam makes me smell & see things.

I totally thought my mask was burning (because of the laser beams of course) because it smelled weird. There are about 6 positions where Roli does his thing that make me smell something. To me, it smells like burning plastic. I think Stella described it as a smoggy smell.

I also totally thought that crazy random laser beams were blinding me. There are a few positions where a purple spectrum of color appears. At first I was afraid to open my eyes for fear that I would go blind (crazy random laser beams can do that, you know). When Stella told me that this is normal, I opened my eyes to try to see where Roli was positioned. When it's the smell, Roli is always in the same place. I haven't figured out just how the color spectrum works yet.

Stella says that some people taste metal in their mouths but that has not been the case for me.

And at work today, I took a photo of my vastly growing gi-nor-mous High School Musical "shrine" if you will.

This is the new wallet that Madisan gave me.

This is the corner.This is looking down the side of my desk to the corner. These photos don't really get all of the stuff, but you get the idea.

I think some of my most unique items would have to be mylar balloons (pre-inflation), bandaids, a box of valentines, a Troy Bolton necklace-watch, and a 3D book complete with 3D glasses. Oh and 2 things not on my desk at work are my lunch box (which I take to work every day) and my special HSM Build-a-Bear (that stays at home to remind me of how grateful I am for co-workers who love me).

Wow, I'm a dork. I do absolutely blame this on my co-workers however! If they weren't so danged fun with giving me stuff, I wouldn't have nearly as big (or awesome) collection.

Days 7-10 Can I just say TIRED!

Tired. Tired, tired, tired, tired, tired. That's why you haven't seen posts from the last 4 days. I've just been too exhausted to be witty and positive and have a bright outlook. I've spent more of this week crying then I'd like to admit. It's not just "yawn, gee I'm tired" it's more like "I can't do anything. {sob} I just want to be normal again {sob, sob} This is so hard and I don't like it {sob, sob, sob}" But apparently, I got over it because here I am blogging.

Whenever you have something wrong with your brain, you worry that everything that is wrong is because of your brain. If you stub a toe, you think it's because of your brain. You start to pass out, it's because of your brain. I find it mostly disturbing because I never know if it's something I should bring up to my nurse or not. "Yeah, um, Anthony - I feel really stupid, like I did after my brain surgery. Could you do something about that? A pill, an injection, something?!"

Okay (now that I've done my sob story) on with the week:

Day 7

Remember the other language "smart-people-medical-terminese"? I found out what it means. It's actually kinda funny.

It says "B solid" "blk pad" & "accuform cushion".

This is B solid (notice the huge B on the side). The part my head rests on.

This is the black pad.

And this is the Accuform cushion. (the blue fabric thing)

They have to make sure that you get radiated with the same equipment that they do your CT scans with. Otherwise, Roli would get super confused with why my head was in a different place.

Day 8

I met Roli's big sister - Yo Gamma Gamma. She asked me to do a dancey dance. (That is totally for my friend Lorelei.)

First off, she's the big sister so she gets a super cool ceiling!! It was gi-nor-mous! And really neat. Unfortunately, the way that she works - the people treated by her don't really get to see it. But I bet it makes them feel more comfortable being in such a beautiful room.

She works a LOT differently than Roli. See that silver circular thing in the middle? There are 201 holes in it where the radiation does it's work. Patients who experience Yo Gamma Gamma get a "halo" screwed into their head then the halo gets screwed into place. Luckily, there's only 1 session. Although, it's a fairly long session - if I remember right. I don't really understand how doctors choose which to use. I'd probably have to go to school to really understand it. But I do know that Roli can't do tumors at the back/bottom of the brain so Yo Gamma Gamma gets those.

Day 9

I found out today that my car is totaled. We haven't decided what to do yet. It's really a bummer to not have a car. So with that in mind, I had a little talk with Roli. I told him that sabotage is NOT good for our friendship. It makes things more difficult for me especially coming to see him. I told him that I expected an apology or I wasn't coming back to see him anymore.

I think he took me seriously, because he had what Stella called a "hiccup" and stopped right at the most perfect position for me to take pictures. He must have heard me talking to Stella about how I wished I could take a picture of him right above me with the ceiling as background. It's the coolest thing (especially when you're strapped to a table by your mask.)

Normally, you can't take pictures of him because,... well,... laser beams and stuff. But if he stops right in the middle, there aren't any laser beams to keep you from taking pictures.

I think it was an adequate apology. We made up. I think he'll take me seriously when it comes to making decisions like this in the future.

Day 10

We normally get done sometime around 4:15. Today we STARTED at 4:30. I didn't feel bad because Roli was helping someone else. Who hopefully won't have to do other hard stuff because of Roli's hard work.

Today I told Anthony (my nurse) about a weird indention that I noticed recently on my head. It's close to where the brain surgery scar is. I don't remember it from before. It's kinda like a baby's soft spot. He said it didn't seem like a problem, but that he'd talk to Dr. Mickey to see if he remembered anything about it. I guess doctors are pretty good at remembering their brain surgery patients...

Stella was there and we talked for like 20 minutes but Sheila was my technician. I think I must have fallen asleep because I don't remember much of it. Man, I felt so tired! And to make it worse I had to drive in Friday 5:30 traffic in DALLAS! But it was the end of week 2. I'm proud of myself for getting through 2 whole weeks! Now, just 3 more!

Sunday side note: So we all know that I've got a weird obsession with High School Musical, right? One of my Beehives (the youth group of 12-13 year old girls that I'm leader of) brought me the coolest HSM purse with a Troy Bolton wallet! I was delighted. These awesome girls keep telling me that they're gonna get a lifesized Troy Bolton poster. I hope I can find a place for it at work! When I take the purse to work, I'll get a photo of just how much my collection has grown!

Day 6... oh my!

Today on the way to radiation, I did this to my car:

I am not injured but my poor little car is. When I get to the hospital (more than an HOUR late), a nice man in scrubs asks "how's it going?" I say "okay". In my head I'm thinking I just WRECKED MY CAR on the way to CYBERKNIFE RADIATION! How do YOU think it's going?

I pretty much think it was Roli's fault. I think Roli was getting jealous that my car gets to spend so much time with me and he arranged the whole thing. All I can say to Roli is, "That car doesn't even have a NAME! I spend so much time in it so I can come see you! And when you disable my car, it provides a challenge for me to GET TO YOU!!"

Hopefully, Roli gets over this fit of jealousy rather quickly.

So, I got the answers to a couple of questions to today. But I'm getting tired so you only get the answer to one of them. "Just how trendy am I?" Oh, plenty trendy - I'm approximately the 10th patient who has had cyberknife treatment for 25 sessions. I'm Roli's 2nd patient with extended treatments like that. (No wonder he's so possessive!)

Stella said that it's mostly been little kids who've received radiation this way. The cyberknife is very precise and their cute little brains need the exactness of delivery.

When Dr. Timmerman was telling me about this type of radiation, he told me I wouldn't be able to find anything on the internet about cyberknife used this way. He said it's only been done for a few individuals. So apparently I'm dumb, because I thought he meant like a few HUNDRED individuals. Nope, he meant just what he said - a few individuals. So I am definitely a trendsetter. (And not a very good question asker before treatment starts. Maybe I'll work on that. Or just continue to ask questions as we go along.) Good thing I'm in the very VERY capable hands of brilliant brain tumor experts! I really do think they are brilliant.

Only on day 6.... what do the next 4 weeks have in store for me?!

Days 3, 4 & 5

Day 3

Can I just tell you, I KNEW that Stella and I would be RFFs (radiation friends forever). I took my High School Musical lunchbox in (so I could finish the foods in there) and Stella saw it and we conversed about it. Ultimately, she told me she watches Disney Channel!! Like seriously, could I ask for a cooler technician? No I tell you, I could not.

Each day when I get there, my nurse Anthony takes my vitals in "the green chair". (He takes them again at the end of each session. I'm assuming this is to make sure nothing goes all crazy from the radiation.)


The green chair


The door into the radiation room.

This is Stella at her station. The little gray thing on the wall is how she communicates with me. The screen on the left is 4 angles of the radiation room, the screen on the right usually has pictures of my brain and where Roli is doing his thing and the adjustments he has to make (and I'm sure lots of things that she has to make sure are going right).

I decided that his official name is Roli (Robot-Laser-Inator). On Phineas & Ferb there's a character named Dr. Doofenshmirtz who's evil. His building is called Doofenshmirtz Evil Inc. He invents all sorts of thing to cause trouble (usually because of something that happened to him as a child) and each one ends in "inator". You know, like Shrink-inator or Evaporator-inator or Even-Bigger-inator. (Surprisingly, there is one of the longest pages ever of info on Doofenshmirtz on Wiki if you're interested.) Anyway, point of story - his name is Roli.

Day 4

I discovered that I GET TO KEEP THE MASK!! Woo-hoo!

Look my name is on my mask with words in another language underneath. If I had to guess, I'd say the language is smart-people-medical-terminese. But I didn't look too closely.

You can't really see it, but I was trying to take a picture of the green laser that (I'm assuming) helps line me up.

And I just thought this was a cool angle of Roli.

Day 5

Totally got there late on Friday. I left a little late, then realized I needed to put gas in my car, then when I got there this adorably cute old couple were getting in their car and all the valets were helping them so that took a little longer than usual. Did I ever mention that you valet park every time you go to any of the buildings at UT Southwestern? Luckily, radiation pays for me to park (cuz otherwise it would be $5 a visit).

On my way there I talked to my dad on the phone. He said, "Well, good thing this is your last treatment..... this week." For some reason that struck me as really funny.

So this treatment I get to meet a different technician - Jason. His wife's name is Susan & when I handed him my cd of Wicked he asked if it was the musical. (Um, my guy technician knew about Wicked!) He and his wife saw it when it was in town. So cool, eh?

So everything went as usual, UNTIL Roli stopped in the middle of my treatment. It was a little hiccup, where they had to re-boot something or another. Apparently this happens every once in a while with CyberKnives. But, get this, I'm the first one Roli stopped for. Roli is a brand new machine. I'm like the 10th patient to be treated and he stopped for me. He stopped so close to my face, I just wanted to reach out and touch him. I think he was just trying to let me know that he likes me too. ;)

I saw Dr. Timmerman. He checks in with you every week. He wanted to make sure I was doing okay. I told him my right eye seemed a little blurry and he told me to get some saline drops and see if it helps. He said that I'm a trendsetter. That he thinks that people in the future will have treatments like this.

I'll have to ask Stella just how trendy I am. I know he said that not many people are treated with a cyberknife like this, but I wasn't thinking I was THAT much of a trendsetter.

Day 2 radiating my brain

More pictures!

Here I am, on the table:



This one is a great side-view:



You can't really tell, but I'm smiling in this one:



This is the table where Robot-Laser-Inator (I decided that's his nickname. Yes, I do watch too much Phineas and Ferb.) changes out his attachments. He uses 2 attachments for my treatments:



Stella said that tomorrow she'd set it up so I could video him picking up another attachment. Stella is really cool. I really like her. I really wish I could take a picture of Robot-Laser-Inator right above me. That's the coolest looking thing. Especially with the cool ceiling behind it.

Maybe if I can figure out how, I'll post the video of RLI picking up attachments. Definitely something that the whole world should see.

One down... twenty-four to go

Did you know that cyberknife is one word? Apparently, whoever ordered the signs for the hospital didn't. (Just thought I'd share.)

I went in the morning for my first appointment so I could meet with the doctor. Richard went with me just in case I couldn't drive home (and so he would know what was going on). Dr. Timmerman wasn't in cords this time. But, he was still in cowboy boots. Right on!

He showed us what the treatment plan looked like (which I might just take a photo of next time) and told us the approximate time for each treatment was 35 minutes. Of course, if I move around, the robot-laser-inator has to re-position making it take longer. (I was thinking - I'll be fastened to the table via my mask. How much could I possibly move around?)



That is MY mask strapped to the table. Next time I'll try to get a pic with me on the table.

Then he introduced me to my technician who is this cool chick named Stella. They together introduced me to my date. (The robot-laser-inator)



This is the actual CyberKnife. (I imagine it will have a nickname by the end of the 2nd or 3rd date.)

At that time I noticed the ceiling.



Well, actually 4 panes of the ceiling. It's pretty cool.

I was pretty nervous just because it was my first time. Stella cut eyeholes in my mask and put the book on cd I was listening to, in for me. I mistakenly told her the wrong track and got to listen to an entire chapter again, but it all worked out.

I was expecting to see a laser beam aimed at my head, but there wasn't one... a little disappointing. You know all those sound effects that robots make in movies?! Whirrr... whiz up close... whiz far away... Totally made them all. It really was fascinating.

I decided that Toomy should have a nickname. I thought about "my free pass to really cool medical experiences" but then I realized that he really hasn't been free - economically or emotionally. (I really have had some neat experiences though. If you come up with a good nickname, let me know!)

It wasn't painful and I was only tired because of the nervousness of the unknown. They told me that the fatigue along with the hair loss will be progressive. (I'm not supposed to lose all of my hair, but I'm not to be surprised when a handful comes out in the shower.) Hasn't my poor hair been through enough?!

I'll be doing this Monday -Friday for the next 5 weeks. My teammates at work have been exceptionally kind - making arrangements for me to leave work early, get radiated, go home and rest before work the next day.

If I can just keep from pushing too hard, I think this just might work out.