Bring you up to date

I haven't posted in a little over a month.  Not that there hasn't been reason to post but really more because there's been too much to post.   (Does that even make sense?!  No, not really.)

I've been to see Dr. Mickey (my amazing neurosurgeon) and whilst the radiation seems to have worked on the tumor.  (It may have even shrunk it a little.)  Radiation works very differently on cysts.  (Like not really at all.)  I have a cyst that keeps on growing.  So. Dang. Annoying!  Now I've known since the last surgery that I would have to have another surgery.  No, the doctors didn't tell me this.  I just knew.  You know, like the Lord prepares you for these things.  In fact, before we went in for the MRI Richard and I talked about it and how I might have to be operated on whilst pregnant.  And for the record, just because the Lord "prepares" you for these things, doesn't mean you have to be excited about these things - cuz I wasn't.  In fact, I shed some tears and it may or may not have been related to the pregnancy...  (as a side note, it's kinda fun deciding what I'm going to blame the next thing on.  Is it because I'm pregnant or because I have a brain tumor...?  Hmmmm....  Maybe both?) 

Super long story short - we are now waiting for Zack to get here and for the cyst to get as big as I possibly can stand.  Dr. Mickey is thinking 3 months after Zack gets here.  I had a really hard time with this at first.  I really wanted it to happen before Zack gets here.  Cuz how lame is it to be a new mom AND a brain surgery patient.  I've been waiting to be a mom for a very long time, dang it!  But I have since found some inner peace and I'm willing to do what Dr. Mickey thinks is best.  Cuz he's amazing.  The one thing that really helped me is that I know without any doubt that I will be alright after the surgery, but I didn't so much know how Zack would get through.  So now I don't have to worry about that.  Zack won't have to go through it.  I'm just going to have to figure out how to be a new mom and a brain surgery patient at the same time.  (Actually, that will be something crazy to tell him about later in life.)

Now on to being pregnant...  I'm 21 weeks along and I look pregnant to me.  Not really to anybody else except Richard.  I totally hate that you can't tell yet.  I think I might possibly be feeling little Zacky moving around.  I started feeling movement Wednesday night after I told the OB that I really wasn't feeling anything.  I know I've said it before but if you've been through childbirth and don't believe in miracles there is something wrong with you.  To have someone growing inside you for 9 months and the changes your body goes through to facilitate it -- wow, definitely miraculous. 

Oh!  Super cool news in our lives - Richard got a promotion!  He's now the Commercial manager of store 1547.  He has a set schedule and doesn't have to work Sundays!  He also got a raise and the opportunity to get overtime every week.  What a blessing!  Only week 2 and he's already doing a great job despite all the challenges of a new location and new clients and everything!!

Okay, my lunch hour is over so that does it for today.  I'll try to be better about posting more frequently in the future.  Maybe next time it'll be a picture of me not-looking-so-pregnant.

Problem areas of my brain

Okay, I finally got the pics to load.

6 months ago on the left, today on the right.

This one has a cyst that has increased dramatically in size.  (It's a black oval, center right - which ironically is the left side of my brain.)

This one has several cysts increased in size as well as an increase in what could possibly be tumor.

(The white spot center right.) 

The white v-shaped spot on this one is the brain's reaction to what's going on.

As you can see, it's not very happy.

Man, I never get tired of looking at my brain.  It's so dang intriguing!

One year anniversary

Today is the one year anniversary of the brain surgery that changed my world.  Hooray me! 

I just got copies of my medical records from the first surgeon.  Very interesting.  I didn't read all of it but I especially liked this one (I added the bold formatting): 

"Susan White is seen now after visiting with Dr. Mickey who recommended a surgical approach.  They have heard conservative recommendations as well.
She is ready to proceed.  We talked about the procedure, the technical aspects of this, and the expected recovery.  She is aware of the risks including loss of speech, seizures and even death.  She is ready to proceed."

Hooray for Dr. Mickey!

Today one of my choir peeps at work told me, "I really like the new you.  Not that I didn't like the old you, but I especially like the new you."  I didn't realize that I changed all that much, but thank you.

Musings of a very awake mind

It's 3:00 in the morning and I'm wide awake.  I have a pinched nerve in my left shoulder.  It's causing me a good deal of pain.  The fingers on my left hand are numb.  They have been for the past 4 days.  I keep shaking my hand around to make sure my arm's not falling off.  I took a couple pain pills last night & apparently they aren't the kind that make you sleepy...  Apparently they aren't the kind that makes pain go away either. 

So I've been lying in bed for the past few hours just thinking.  Thinking about how I'm going to divy out the responsibities for the YW Sock Hop to my Mia Maids.  And how on earth I'm going to find the 50's music that I need for Wednesday night.  And how I really want to remember what happened when I had brain surgery.  And how I kinda associate blogging with brain surgery - which is so dumb because I remember telling my very best friend Joni how I'd love for her just to write so I can hear what's going on in her life. 

So I decided to get up and blog - even if some of it IS about brain surgery.

For example, after one of the first surgeries when I was coming out of anesthia (how on earth do you spell that?!) a doctor was leaning over me and asked me if I knew where I was.  I, trying to be so lighthearted, responded "Pizza Hut?"  The doctor laughed.  Then I was kicking myself with why Pizza Hut was the best answer I could come up with - why not Disneyland or the red carpet or ANYplace better than Pizza Hut. 

And after the last surgery, the doctors were around my bed asking me what things were (this happens quite often when they are assessing your brain) and it seems like the words were coming slowly.  They point to things like their wedding band, or a pen, or a person.  Well, they pointed at Richard and I couldn't remember my husband's name.  I knew it and I knew that I knew it, but the only R name I could come up with was Randall (my brother).  I was so frustrated.  I don't remember if I cried or not but I felt so bad that I made Richard feel bad.  Richard and I will have to sit down and record thoughts soon.  My memory does weird stuff now.  Kinda annoying but maybe with both of us, it'll be easier to remember what happened.

Dude, the pain in my arm is increasing.  Probably a good solid 5.  My siblings give me a hard time because I've been a little melodramatic about pain in the past.  Someone will poke me and my response is a rather whiny oww.  And I haven't had a very high pain tolerance... sometimes I wish someone else could feel my pain and let me know just how intolerant I am.  I don't know, we might just realize that I actually DO have a high pain tolerance!

Something else I was thinking about was the cool new High School Musical stuff I got at Party City last night.  Richard is totally throwing me a High School Musical birthday party.  (He just found out about that last night.)  I'm totally going to make little boxes of stuff to send home with people.  Which makes me wonder who on earth I would invite to my High School Musical birthday party?! 

I kinda like collecting things that are "so yesterday" because they are on clearance!!  I got a ton of cool stuff (for above mentioned party) for 10 bucks.  It would have cost waaaaaaaay more if it were Hannah Montana or Tangled or something that's in right now.  (P.S. Hannah Montana is "in" according to Party City.)  My nephew Tyler came to my house and saw my lunchbox.  He said, "You really like that, huh?"  I said, "Just you wait and see my huge box filled with stuff."  I proceeded to show him my huge box of stuff and he said, "You have High School Musical EVERYTHING!"  Yes.  Yes I do.  And it's amazing just how much more stuff one can find even after they have EVERYTHING. 

Okay, I've got to go lay down.  My arm really really hurts.  Maybe I'll fall back to sleep while I'm at it..

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.

Wicked and "Toomy"

I went to Wicked Wednesday night. It was AMAZING!! The story line is sooo good. And the vocal talent was awesome! I really want to see it again. I could go on and on about it. Best musical ever!

Thursday we went to the radiation oncologist. We discovered that my case has been presented at the board of tumor-treating people. (I don't remember what they called it.) That's right - I'm very interesting to a whole group of brain surgeons (and their students I might add). I like the radiation oncologist - corduroy pants, cowboy boots and everything.

We found out lots of new things about my tumor (that we lovingly called Toomy). It is a pilocytic astrocytoma. It's an odd occurence for several reasons. It mostly appears in children under 14. They usually don't have cysts associated with them. It's in an odd place - normally it's closer to the cerebellum and mine is closer to the thalmus. And normally tumors are what they call "suckables" because there is little cohesion and they normally come right out - mine is stuck. And apparently stuck in a very sensitive part of the brain.

So we are going to wait until the next MRI then discuss radiation options. Radiation isn't painful and you can go about your regular life. The only hard part is that it's Monday - Friday for 5 weeks. It's only like 15-20 minutes but you have to schedule your day around it.

Radiation usually does not shrink tumors it's primary function is to stop the tumors from growing. Oh and apparently cysts after they "pop" can 'remember' where they started out and repair themselves. Radiation works a little differently on cysts. It's usually about a year before you see the effects.

So we'll see how it goes at the end of July. That gives me 2 more months to pray about it. :)

Something else my brain can't figure out

Yesterday I spent my first few hours in the sun swimming. First of all, I had to put sunscreen on my scar. (My sister said, "It's like a baby's head - no big deal." Yeah, whatever!!)

Second, I discovered a new brain rewiring problem. When I was in the water, I couldn't figure out how to hold my breath. Everytime I went under I breathed. Obviously I didn't go under very often. This morning I realized that when I drink I hold the water in my mouth until I tell myself to swallow. So apparently it has something to do with liquid and breathing and my mouth.

How's that for brain rewiring?

Current issues

I'm ready for the "4 weeks of healing" to be up. The actual surgery site is giving me fits. The headaches are really painful. Luckily I been okay at work, but at home it's terrible. I just want to go to bed and sleep it off.

I've been nauseated. Every day. Since I've been home. That's right it's been almost 5 weeks. (No I'm not pregnant. I was tested before my MRI last Thursday.) I don't know why I'm nauseated. I can't figure it out.

I'm crying all the time. I cried yesterday when Lee (who reminds me of my little brother) won American Idol. I cried when I read my blog posts from January. I cried watching "Meet the Robinsons". Good grief! Cry, cry, cry.

Those are my 3 big complaints. I just thought I'd throw them out there. I don't want to forget them. Maybe sometime I meet someone who had surgery and I'll be able to share with them.

Headaches, anyone?

Yeah so still having headaches. Anybody know how long you are supposed to have headaches after brain surgery? (I should post that on facebook - just for the humor of it.) I'm wearing my contacts today. It definitely hurts less than when I have my glasses on but right around the scar it STILL HURTS!!! It's kinda funny, it hurts more when I laugh or when I make a face or an expression. What does that tell you? (Yeah, yeah I know, I know - I shouldn't laugh or make a face or an expression. I better stop hanging around with Richard.)

Which makes me realize just how much I love Richard. I don't know what it is about brain surgery but me coming out of it - holy cow!! I am so dang attracted to him - more than ever before. And I think he is soooooo funny. Hilarious! I thought he was funny before we got married and then after we got married something happened. And I figured it out. . . after 5 years I figured it out. Holy crap (to quote Strong Bad - which I can totally hear Richard saying in my head and it's making me laugh) Heavenly Father had to put me through 3 brain surgeries to finally get this! Good grief I'm slow! I've been labeling him with something that isn't him, it's something he had to deal with. I've gotten so frustrated with the obsessive eating & obsessive spending & obsessive obsessive-ness over any little thing. I've failed to realize that's not him. That's something he deals with. Now I'm not saying it's excused, I'm saying it's understandable. I have a sibling who throws pyscho fits because they're biopolar & another who does drugs to deal with their bipolar. It's not them, it's the illness. It's NOT okay, but it helps you understand where they are coming from.

OCD is not just hard on me. It is so much harder on him. Obsessive isn't just a descriptive word - it's a place where your mind goes and gets stuck. So now, I just have to figure out how to deal with it the right way. I guess it'll take some pondering and prayer.

Symptoms and mental health and HSM

Remember my shaky hand? It's back. Bummer. I keep making sure that my right eye is still working (which it is). My language is doing much better this time. I get a little tongue tied when I'm nervous or excited or tired but it's not like before. And this morning I got another killer headache - I'm pretty sure that has to do with my ear infection because it was right behind my ear. I'm so grateful for ibuprofen. The other thing is that I've been sick to my stomach almost everyday since I've been home. Don't know what that's about. I wonder if I could go online and find a list of things that you might expect after brain surgery. (Yeah you can't - they say stuff like "every brain surgery is different so expect different reactions." Yeah that's real helpful.)

The other day after the exhausting day at work, we went to an exhausting visit with our pyschiatrist. I say "our" because he's treats both of us. Yesterday was Richard's appt. (I do have Richard's permission to share this. He is supporting my attempts to dissolve the stigmas. If I told you he had high cholesterol - you would think nothing of it. It should be the same way if I tell you about a mental health condition. In fact it should help you understand that person better.)

He's been diagnosed with obsessive compulsive disorder partnered with depression. As of the end of last year our dr has really been able to stabilize this. Since all of this uncertainty has started, both the OC and the depression have been out of whack. For Richard the OC has to do with obsessively eating or spending money or escaping into a movie (buying figures, watching it over and over, taking up new hobbies based on it). The depression this time has to do with incessant sleeping and lack of motivation. The dr said that the real way that he'll get back out of this is by finding out what's going on with me. But he gave us something to try to help him wake up and something to stimulate his thyroid until then. Good times. Just think we only have a week before we find something out. Let's hope it is the kind of stuff the dr meant when he said that. :)

Okay last but not least - I finally got a picture of my cube. Actually I forgot to take it when I was there so my friend took it and sent it to me. She's obviously not the one who sits there so the sticky notes, pens, chapstick, lotion, stickers, notebook and other cards normally displayed at the bottom are just kinda stuffed under some other stuff. So what you can see right now is the calendar (yes I traded 2009 for 2010), some stickers, a mini poster, a big row of magnets, and a card. That card may have been from my team last year - hard to remember for sure. No, no they gave me a singing card last year. "Soaring, flying..." It must be buried in the other stuff.

I miss you desk at work.

50 first dates

Saturday night when Richard and I got home from grocery shopping, we turned on the last half of 50 First Dates. I've seen it once before but mostly forgot it. It definitely has it's share of inappropriate tacky stuff - I don't think I'd watch again BUT that's not why I'm blogging about it.

It's amazing what kinds of things change once you've had brain surgery. In the movie she got in an accident with a stray cow and as a result she had brain surgery and her short term memory is affected and each morning she wakes up and doesn't remember anything from the day before.

In one scene they go to the doctor and are looking at her scans on the lit up wall (you know the ones made for MRI and CT scans). I wanted them to move and let me look at them closer. Then (wait for it, wait for it) I started crying. That's right, crying. I'm pretty sure I didn't cry the last time I watched it. I was crying for her - an actress who doesn't really deal with this stuff. I was crying for the people who really do deal with it. Brain surgery is the pits! How terrible is it for the people who not only have to do the hard part of the actual surgery but have major problems as a result. Made me soooooo grateful that I don't have the major problems as a result. Sooooo grateful.

Who knew that brain surgery would make you cry during a "comedy"? And who knew that comedy would help you stop feeling sorry for yourself?

Headaches and last night

Man, I've been getting headaches the past couple of days and it's not my favorite. Let's face it - I have a low pain tolerance - I can't help it, I always have. And these headaches, I don't know as a result of having someone literally inside my head, HURT. A few days ago I only had to take Advil like 3 times - the entire day. Yesterday it was like 6 times or 7 and it was a mixture of Advil and Tylenol. (I should have just taken a pain pill - but I'm trying to not take them.) I guess I had a little too much excitement on Tuesday. Between a friend coming over, going to lunch with a different friend, and going out to the play - I guess I'll take it down a notch in the next few days.

On a different note, last night my mom 'introduced" me to Stephanie Nielson. There is a LDS video of her called "My New Life" and a blog that my mom had been following for like a year and a half. She called me and said, "Go watch this & read this. You will never feel sorry for yourself again." This girl was in a near-fatal plane crash in August of 2008. She has 3rd degree burns all over her entire body. She was in a coma for the first (I think) 3 months. She's is still going through all sorts of surgeries and hard stuff. That's what I've been calling most trials lately - hard stuff.

This is totally embarassing to admit but I cried for an hour. (That's not the embarassing part.) I cried because she's been doing this for almost 2 years, I've been doing this for 4 months - I just want to be done. And I don't know what Heavenly Father has in store for me. Dang it - I'm crying again just thinking about it. I just want to be done - 3 brain surgeries is enough to last me a lifetime. I want to go back to work and I want to have a calling at church and I want to not have headaches.

I KNOW that I'll be healed no doubt about it, I just don't know when or how. I'm having a hard time with my faith. Not the faith that I'll be healed, not the faith that Heavenly Father knows me and is watching over me, (actually this is embarassing too) it has to do with our family's financial stuff. Actually now that I say that, that's not even it, I know He'll help us through that. You know what, I just want to be done and I have a feeling that I'm not done yet. That's the hard part - I have a feeling that I'm not done yet.

(By-the-way, Stephanie's story is amazing. She has some neat thoughts and really is a faith-inspiring person.)

Okay now that I've bawled my head off - not once but twice in the past 12 hours - I think I'm ready to stop feeling sorry for myself. Lots and lots of people who have it way worse than me. I need to be grateful. I'm going to be healed. I don't have to worry about dying. I'm going to be healed. I'm not going to lose any of my faculties. I'm going to be HEALED for heaven's sake! I'm going to have to find a project to fill my time. Because right now, there is a LOT of time for me to feel sorry for myself. Wouldn't it be so much better if I serving someone else? That would feel intensely better. Mom always taught me if you are feeling sorry for yourself, just look around and you are sure to find someone in a worse position than you are. (Thanks mom.)

Richard keeps asking what on earth I'm writing about. Just feeling sorry for myself. But I think I'm okay again for a little while. Feels great to write about it and gain control over your feelings and get it out of your system. :)

No staples!

No staples! It looks amazing compared to before. I found out that this time that "the two bone flaps were replaced and fixed with titanium miniplates and screws." Cool huh?!

Everything is healing pretty darn well. This time the spot goes right out on my forehead. But it's so neat and precise I'm all over it.

Great news

Today we went and saw the surgeon. The surgeon was so positive about the progress I was making and the information about the tumor. It is a very slow growing benign tumor (like we thought before but apparently wasn't fully diagnosed before). He is very confident that we will be able to treat it. (Unlike he can tell some of his other patients.) At this point, we aren't really sure how to treat it. We get to wait for the bruising to go down in my brain. (Did you know that your brain bruises the same way as your arm? Who knew?!) It'll take about 3 weeks for it to all go down. Then we'll go back to have another MRI and decide what to do then. We'll then be able to see just how much tumor was removed and how much of the fluid sack was taken out. There may be some other difficult stuff to treat it. There may not. We'll know then. But hard or not, it will be treatable.

It's kinda funny how such a benign tumor can be so invasive. But I'm very grateful for a surgeon who is so amazing. I took him cookies today. He seemed pretty delighted. I'm glad, because he's made a world of difference in my life.

The gross-est cool-est bodily fluid EVER!

Okay I really hope you can see this because it's so gross and cool. Right above my eye in the half circle there is like 2 tablespoons of bodily fluid. In the first pictures I'm showing you where it's at.



In the second pictures I'm pushing on it so hopefully you can see where it is.

Sooooooo gross. Sooooooo cool! Soooo supposed to go away.

Saying prayers and fastin for me.

I am so grateful for those of you who continue to say prayers and fast for me. It is such a neat thing being reminded that people you love continue to love you. They haven't forgotten and they want you to be better. It's equally as neat having friends of family who have not even met you pray for you as well. I feel an overwellming feeling of Heavenly love shared through each of you. Thank you for strengthening my faith.

First a ton of pictures then making fun of my posts. ;)

Head shots

Me in the hospital

Me and my wampy head for the last couple days

I'm pretty see if you click on them they get bigger.

Okay so now for the making fun of myself the last couple times where I was flying so fly I couldn't touch the sky. It's kinda funny making fun of yourself when you just got out the hospital and were all hopped up on pain pills and just wanted everyone else to see you were doing great! How funny!! I'm actually doing remarkably well this time compared to last time. (If you compared any of the pictures of last time you would see a remarkable difference.) Oh I didn't do a very good comparison to what pics Richards put up so I put them all up. Thought it would be more easy that way.

Today is Sunday and I dealt with my little emotionality today. I got understandably frustrated that healing will last longer than one week (which understandably I haven't even hit that stage yet.) Actually tomorrow night will be 1 week. Wow can you even believe that?! Last time after one week I just wanted to stay in bed all day and night. Now I feel great. Don't get me wrong it's hard but I feel good about it. Got to remind myself that I will do much better if I stay on the healing side.

Today 1.5 days at home

I'm in a lot of normal, necessary physical things to be a part of. I'm very very grateful to have the emotional to help me. I'm very grateful that I can take this opportunity to put together words now that I'm out of surgery. It's actually a little difficult. Sister Green said at church that she had some neat tools that she used after her stroke. I think I will get together with her.

I imagine it will take a few weeks for my speech to all come back. The blessing from the Bishop said that I will not lose any speech. There were a lot of other things the Lord promised me. It was a really really neat blessing. I am grateful to have been a part of it.

I'm grateful to share with you (& myself someday) how it feels to not really remember all your words. I still feel very smart just not all there.

Another one

I feel like I need something to do right now. I look like a Garbage Pail Kid. Pretty funny let's see if I can put one of me.

It's funny. I feel like this kid whose been through brain surgery 3 time. And none of you have. None of you even get is (except Sister Taylor who just went through it). The rest of you are just like oh brain surgery. It's really really weird for me. And it would be exactly the same if I were in your shoes.

I haven't been to work since January. Don't really have a calling (which don't get me wrong, is the right thing.)

Right now I'm flying fly on pain killers so I'm sure next time will be a little more making sure.

It's ME

This has been an amazing experience for me. Thank you for all your thoughts and prayers. Now I'm gonna go to sleep because I seriously sound retarded (and I not!!!)