Foreword
I have a brain tumor. I discovered it in January 2010 after some intense headaches – I was fine sitting down, but standing up was something else! It started out as a golf ball sized tumor with a grapefruit sized cyst. I’ve had 3 surgeries this year and now it’s a ping pong sized tumor with no cyst. It’s non-cancerous yet still a slow-growing, awfully invasive tumor. The doctors at UTSW decided radiation was the best plan for me. I got to experience CyberKnife radiation “fractionated” out for 25 treatments (this is very uncommon for now but perhaps in the future this will be much more commonplace). These are my blog posts about my radiation adventure. I hope through my adventure you might know you’re not alone on your adventure.
Thursday, August 19, 2010
So cyberknife radiation is coming up. Today I had lab work, MRI, CT and mask fitting. Yes, you heard it - mask fitting.
They show me a flat plastic thing. Then they get it wet and mold it around my face. Then it hardens. It will be used each day to keep my head still.
They show me a flat plastic thing. Then they get it wet and mold it around my face. Then it hardens. It will be used each day to keep my head still.
It will take a couple weeks for them to plan out my radiation. When they know, I'll let you know.
I really hope I get to keep the mask.
Saturday, September 4, 2010
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 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 (my brain tumor) 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.
If I can just keep from pushing too hard, I think this just might work out.
Tuesday, September 7, 2010
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.
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.
Thursday, September 9, 2010
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.
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!
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 (just like me) & 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 he’s 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.
Monday, September 13, 2010
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 its 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 EVER 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?!
Sunday, September 19, 2010
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'm done with 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.
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'm done with 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 its 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 another "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 has to be rebooted 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 life-sized 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!
Tuesday, September 21, 2010
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 huge-o-mongous High School Musical "shrine" if you will.
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 huge-o-mongous 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), Band-Aids, 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.
Tuesday, September 28, 2010
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 its 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.)
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 its 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.
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.
Man, I love that Roli. He's so cutting edge... so trendy... so Roli...
Thursday, September 30, 2010
I only have 5 more treatments after today. I hate to admit it but its 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
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...
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...
My nurse...
Anthony (who I really should make a camouflage duct tape "man bag" for as a joke)
My technicians - Jason, Sheila & Kara (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...
My technicians - Jason, Sheila & Kara (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.
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.
Tuesday, October 5, 2010
I bet you are wondering how my hair is doing after day 22...
Shaved again?! Nope, that was after surgery #2...
Shaved again?! Nope, that was after surgery #2...
A pronounced C branded in my head?! Nope, that was after surgery # 3
A super cool faux hawk?! Nah, that was an awfully cool intermediate do though.
Dyed purple?! No, although I think my head might actually be healed enough that I could wear my wigs now. (And I'm not going to lie, this is much cuter than my real hair is right now.)
I guess hair coming out in clumps was not meant to be! I really didn't lose much at all. I mostly still hate my hair, but at least you can't see the scar (and my apologies to the girl that suggested I use the scar as a part... I totally made fun of your dumb suggestion in my head... and yet, now I'm using the scar as a part... who knew that it would be better than making it look like a comb over...)
Wednesday, October 6, 2010
I knew that the minute I told you that there were no hair problems, I'd notice a hair problem. Seriously... a huge bald spot. My husband was like "how do you have a huge bald spot and not notice it?" First off, I'm not very observant. Second off, for some reason I thought it was part of where my scar is at. Luckily it's not noticeable when my hair is down.
See - hair is down, no bald spot.
Hair is up - huge bald spot!
See - hair is down, no bald spot.
Hair is up - huge bald spot!
This is how the bald spot makes me feel. Kinda sad. (And super dorky that I didn't notice it until today!!)
Can I just say that being exhausted is getting old?! I don't know about you, but I get physically ill when I'm so exhausted. I feel like I need to throw up & my head aches like crazy! And it's really hard to sleep when you feel like throwing up & your head aches like crazy. I'm taking the last few days of this week off from work so I can function.
Today on the table my head felt like it was hot and about ready to explode. I don't know if I was in a weird position or what cuz it felt okay afterward but I sure was pleading for Roli to be done
The only thing keeping me going is my crazy antics I'm planning for Friday.... Roli and I are going out with a bang!
And happy 21st birthday to my awesome little bro Brad!
Can I just say that being exhausted is getting old?! I don't know about you, but I get physically ill when I'm so exhausted. I feel like I need to throw up & my head aches like crazy! And it's really hard to sleep when you feel like throwing up & your head aches like crazy. I'm taking the last few days of this week off from work so I can function.
Today on the table my head felt like it was hot and about ready to explode. I don't know if I was in a weird position or what cuz it felt okay afterward but I sure was pleading for Roli to be done
The only thing keeping me going is my crazy antics I'm planning for Friday.... Roli and I are going out with a bang!
And happy 21st birthday to my awesome little bro Brad!
Friday, October 8, 2010
Today was my 25th treatment of cyberknife radiation. Hooray, I graduated... or something... It was truly a bittersweet experience. I'm so grateful that it's over and I'll miss my UTSW friends sooo much.
So we got done and crazy antics ensued. I'm pretty sure they've never had a patient like me before. Anthony showed me the photo attached to my file (I've got the faux hawk going on). He said he was looking through the files & thought 'now that's a patient to meet!' I asked if he was disappointed. He said "not one single day." Awww, thanks Anthony.
This first video is so you can see Roli in action. It's a recording of him changing collimators. Be sure to listen closely to his sounds.
The second video is in tribute to how trendy Roli will become. Please notice he's wearing his favorite zip-up hoodie. This song just seemed appropriate - I mean after all Roli DEFINITELY is the Troy Bolton of CyberKnives. (Just keep in mind there was only one take.)
The third video is my own little "love song" to Roli. I went through my dress up clothes and found scrubs. How could I go with anything else?! The wig also seemed appropriate. Roli - I'm really going to miss you!
This last video is Stella! How could I not include a video of Stella?!
Good-bye my dear friends!
Tuesday, October 12, 2010
Well, my time with Roli is over. (I'm still crying myself to sleep...)
I'm still super "fatigued" from the radiation. I was grateful to Dr. Choe who I saw on Friday. He validated me and said it was normal for me to feel fatigue and that the next few days would get worse but it would all be better within a few weeks.
(So much better than a couple weeks ago when a different random doctor told me that when you look at what radiation actually does to the body, it makes no sense that people get so fatigued. Ya know what? Even if it's just "psychological", the radiation on my BRAIN makes me tired and super duper sick to my stomach. And since you've never had brain radiation from a cyberknife, I don't really want to hear what the "medical books" have to tell you! Besides that, I was also told that no one could tell what kind of side effects I've have because it’s my brain. Maybe my brain gets tired and nauseated! So there.)
The last week of radiation was the hardest for me. Every day on the table I'd spend time thinking about what fun shenanigans I could be a part of, but at home it was pretty hard - just being sick to my stomach and not having much energy. My head started hurting a lot. Super annoying.
I showed you my bald spot (that I didn't notice), right? Well, on Sunday I discovered the bald spot is even bigger!! I was in the bathroom and went out to get my camera. When I got out in the hallway, Tally (who we lovingly call our dog-ter) staggered toward me. I was so confused. Then she collapsed in my lap and had a minute+ long seizure. Holy cow! It was so upsetting to me. I just cried and cried and cried. I thought, "Please don't let me finish my brain tumor treatments and take Tally. Please. Molly & Tally are my kids. Please don't let Tally die." It just seemed so unfair. It wasn't until later when Richard reminded me that death is an okay thing, that I realized that it is okay. Much peace came from this.
We took her to the animal ER and they diagnosed her with idiopathic epilepsy. No medicine until she has another seizure. (Goodness, seizures are really disturbing.) So she's okay, we just have to keep an eye on her.
And I had a reminder that life isn't always what we want. We have to be able to accept things - really hard things. (Apparently, I didn't learn this from having a brain tumor. Gee, am I'm slow or what?!)
And just because you may be curious, here are the pics (taken much much later) of my even bigger bald spot.
I'm still super "fatigued" from the radiation. I was grateful to Dr. Choe who I saw on Friday. He validated me and said it was normal for me to feel fatigue and that the next few days would get worse but it would all be better within a few weeks.
(So much better than a couple weeks ago when a different random doctor told me that when you look at what radiation actually does to the body, it makes no sense that people get so fatigued. Ya know what? Even if it's just "psychological", the radiation on my BRAIN makes me tired and super duper sick to my stomach. And since you've never had brain radiation from a cyberknife, I don't really want to hear what the "medical books" have to tell you! Besides that, I was also told that no one could tell what kind of side effects I've have because it’s my brain. Maybe my brain gets tired and nauseated! So there.)
The last week of radiation was the hardest for me. Every day on the table I'd spend time thinking about what fun shenanigans I could be a part of, but at home it was pretty hard - just being sick to my stomach and not having much energy. My head started hurting a lot. Super annoying.
I showed you my bald spot (that I didn't notice), right? Well, on Sunday I discovered the bald spot is even bigger!! I was in the bathroom and went out to get my camera. When I got out in the hallway, Tally (who we lovingly call our dog-ter) staggered toward me. I was so confused. Then she collapsed in my lap and had a minute+ long seizure. Holy cow! It was so upsetting to me. I just cried and cried and cried. I thought, "Please don't let me finish my brain tumor treatments and take Tally. Please. Molly & Tally are my kids. Please don't let Tally die." It just seemed so unfair. It wasn't until later when Richard reminded me that death is an okay thing, that I realized that it is okay. Much peace came from this.
We took her to the animal ER and they diagnosed her with idiopathic epilepsy. No medicine until she has another seizure. (Goodness, seizures are really disturbing.) So she's okay, we just have to keep an eye on her.
And I had a reminder that life isn't always what we want. We have to be able to accept things - really hard things. (Apparently, I didn't learn this from having a brain tumor. Gee, am I'm slow or what?!)
And just because you may be curious, here are the pics (taken much much later) of my even bigger bald spot.
Just a few more weeks, then (cross your fingers) back to normal.
Post Script
If anyone asked, these would be my personal tips/thoughts.
- Having eye holes poked in your mask is vital. (You miss really cool stuff and I felt like I was suffocating otherwise.)
- I thought it would be really nice to have a book on cd specifically for radiation. That way me and my technician would be able to listen to it. Doesn’t that sound so nice and thoughtful…? Didn’t really work; with all the noises you miss out on some of what’s going on in your book and you don’t always have the same technician and they can’t hear everything and are focused on your treatment anyway. (Music cds or iPod – totally the way to go.)
- I started really getting tired the second week. The fifth week was RIDICULOUS how tired I was! It was everything I could do to get up for work (at my computer, at home) and get myself to radiation. Not much else. Ate a lot of fast food, skipped a lot of activities I would have liked to be a part of. They say you can still be a part of normal life, but for me – that was not an option.
- For me the hair loss wasn’t super noticeable until the fifth week. And even more noticeable the week after! 8 days later, the patches are still as smooth as if I’d waxed them. I’ll keep you posted to how that pans out.
- I think it’s probably normal to feel a little depressed after your treatment is over. I’ve felt so far removed from most of my friends (work, church, walking buddies) then when my “hospital” friends aren’t there to fill in the gaps… it’s HARD. As things get back to normal, I imagine life will get back to normal too. I’ve kept in contact with my hospital friends through email. And I made a special effort to call a friend and go do something random – that helped a lot!
- Being positive is the best way to get through it! Of course, everyone has those days when it feels like life isn’t fair and you’re so done with having a brain tumor and how can you possibly get through it - those days a really good cry does WONDERS. I’ve had days (notice the plural) that I just want to be done (oh I so just want this to be done, why isn’t this done?!) and I don’t understand why it’s happening to me (shouldn’t it be happening to someone who’s chronically mean?!); then I remember that Heavenly Father knows me and what I can get through. We were sent here to be tried and this is definitely one of those “trial” things. It reminds me of my most favorite quote that has helped me through this all. It’s from Neal A Maxwell. "One's life. . . cannot be both faith-filled and stress-free. . . Therefore, how can you and I really expect to glide naively through life, as if to say, "Lord, give me experience, but not grief, not sorrow, not pain, not opposition, not betrayal, and certainly not to be forsaken. Keep from me, Lord, all those experiences which made Thee what Thou art! Then let me come and dwell with Thee and fully share Thy joy!” Real faith. . . is required to endure this necessary but painful developmental process." (So have faith and be positive!)
Sunday, November 7, 2010
1 month after Roli
Tomorrow will be one month since my sad farewell to Roli. I've got all my energy back. (I love it!!) I've lost more and more of my hair since my joyous claim to not have lost any. Each little bald spot is smooth as though I just waxed it. No hair is growing back yet. Apparently it takes about as long to start growing back as it did to fall out (but like all things physical it's different for everyone). So six weeks-ish is when it starts growing back.
the right side of my head
the one little bald spot on the right side
(lasers go all the way through your head, they don't just stop in the middle which is why I'm surprised I don't have more little spots on the right side)
the left side of my head
a really hottie, huh?!
The surgery scar is getting increasingly less noticable to me. Losing hair probably helped that. My head is still tender. Sometimes I feel like I'm Harry Potter. My scar hurts when Voldemort's thinking about me. No wait! It's when Roli's thinking about me!! I guess as time goes on he'll think of me less and less. But that's okay - he'll have other tumors on his mind. (But years from now, when it hurts every once in a while, I'll smile that Roli's thinking about me again.)
It's November already... what a difference a brain tumor makes. Good grief. It seems like I've had Toomy (my brain tumor) forever. I saw someone that I haven't seen in years. She asked how I'm doing and all I could tell her was that I have a brain tumor. I felt really dumb - I felt like a brain tumor defines me. But it kinda is my life this year. Someday I'll look back on this... and... well I don't really know what the 'and' is, but someday I'll look back on this. :)
Since surgery I'm getting a little better at 'performing' in front of people. Singing a solo in church helped a lot, but groups are way better. I still have a hard time being the center of attention. I'm grateful for that. I never understood how people could have "stage fright" and now I do. I can be more empathetic when people are nervous.
I wonder how many people go through this stuff. I think it would be fascinating to hear how it went for other people. And there are so many things I didn't realize about tumors and cancer vs non-cancer and different types of radiation - things I'm sure other people don't realize either. I'm thinking about writing a book.
It's November already... what a difference a brain tumor makes. Good grief. It seems like I've had Toomy (my brain tumor) forever. I saw someone that I haven't seen in years. She asked how I'm doing and all I could tell her was that I have a brain tumor. I felt really dumb - I felt like a brain tumor defines me. But it kinda is my life this year. Someday I'll look back on this... and... well I don't really know what the 'and' is, but someday I'll look back on this. :)
Since surgery I'm getting a little better at 'performing' in front of people. Singing a solo in church helped a lot, but groups are way better. I still have a hard time being the center of attention. I'm grateful for that. I never understood how people could have "stage fright" and now I do. I can be more empathetic when people are nervous.
I wonder how many people go through this stuff. I think it would be fascinating to hear how it went for other people. And there are so many things I didn't realize about tumors and cancer vs non-cancer and different types of radiation - things I'm sure other people don't realize either. I'm thinking about writing a book.
