Saturday, August 29, 2009

Lyrics to My New Favorite Song

I recently purchased the song "You Know Better Than I," sung by Dallyn Vail Bayles. It was featured in the film Joseph: King of Dreams. This has become my newest favorite song (I have a lot) because of the words.
The song is basically a prayer that Joseph says while he is in the prison. The film shows Joseph upset for a while about all the trials that have happened to him. He eventually humbles himself once he realizes the Lord knows what's best for him. Joseph once again places his trust in the Lord and he is eventually let out of prison and goes on to become one of the most powerful leaders in Egypt.
Below are the lyrics. I am working on getting a song player for my blog, so for now you'll just have to check out the song on YouTube.

I thought I did what's right
I thought I had the answers
I thought I chose the surest road
But that road brought me here
So I put up a fight
And told you how to help me
Now just when I have given up
The truth is coming clear

You know better than I
You know the way
I've let go the need to know why
For You know better than I
If this has been a test
I cannot see the reason
But maybe knowing
I don't know is part of getting through
I tried to do what's best
But faith has made it easy
To see the best thing I can do
Is to put my trust in You.

For, You know better than I
You know the way
I've let go the need to know why
For You know better than I

I saw one cloud and thought it was a sky
I saw a bird and thought that I could follow
But it was You who taught that bird to fly
If I let You reach me
Will You teach me
For You know better than I
You know the way
I've let go the need to know why
I'll take what answers you supply
You know better than I

I Survived!

The first week of school...it's over and I survived (barely)! It was so much fun to see all of my friends after the summer! Everyone gets so tan - I'll never be able to, especially if I'm hospitalized every summer! My insomnia is still a pain, but I managed through the week even though I needed a nap everyday. Mom let me sleep in on Wednesday and Thursday I came home early because of nausea, but Friday I went to every class! I came home for two hours because of an assembly, so I just slept in my own bed instead of the nurse's office. It was so nice to sleep in this morning - I slept until 10:30!
My classes are great, all of my teachers are incredibly nice, and I have a ton of friends in most of my classes. The homework load is horrible, though. I've had to stay up until at least ten every night just so I could get everything done for the next day. I do have a study hall, but I'm always nervous that I won't finish the assignment and I'd prefer to use the study hall for a nap in the nurse's office! :)
Here's the list of my classes (in order of how my day goes): Honors Pre-Calc, Art Foundations, Honors Chemistry, AP United States History, Intro to Drafting, AP English III, and Spanish 4 Honors. I have the most homework in my AP classes and Pre-Calc, but the art and drafting rarely give any homework so it all evens out. I really enjoy art because we're just doing basic drawing right now while we wait for art supplies to be delivered. It's SO relaxing - especially after first period math. In drafting we're doing some basic drawing as well of simple 3D shapes. I can't wait until we get to learn to use the autoCAD computer program!

Tomorrow is church and a seminary kick-off fireside. Seminary starts on Monday - yikes! I'm going to die from lack of sleep! I have a biopsy on Tuesday, a PET scan on Wednesday to see if the cancer has shrunk, and then Friday I'm hospitalized for round#3 of chemo.

I still have a ton of homework to finish up before I go to bed, but I wanted to make sure I at least let you all know how the first week at school went! Below are some pictures - enjoy!

Rachel's first day of freshman year! It's been fun seeing her at school. She's hating geometry and the homework load, but overall I think she's enjoying the high school.

Finishing up some AP US homework during breakfast. Ugh.

Friday, August 21, 2009

Still at home...

I love being at home!

Friday August 21 - We went to the hospital for a quick visit today - I just needed some labs drawn, one chemo drug, and a shot. They had trouble accessing my port which was very traumatic for me and then the nurse used my left arm for the shot, so my entire left shoulder area is incredibly sore. But we got to come home without being admitted! YAY!
The doctor gave me a prescription that should help with my insomnia. So far I've been sleeping all right with it, but it's only really helping me fall asleep. Hopefully the problem will be solved before Tuesday when school starts. I was given an amazingly silky pillowcase that has helped a lot, too!
On Friday I actually went out in public without hair. Mom and I made an impromptu stop on the way home and I had only brought along a hat. I felt like everyone was staring at me, but more importantly I learned just how much heat you lose through your head. The store specializes in fresh produce, so the building is kept fairly cold. I was FREEZING! I also learned that hats can fly off your head a whole lot easier when there isn't hair to hold them down.

Saturday August 22 - I got my actual wig to keep!! The company in California fixed it so that it fits my head a whole lot better. It's a lot more breathable than the loaner wig and so much more comfortable! I wore it the rest of the day (which was only about five hours) to see how long I could last with it on. I also went over to a friend's house where we watched Confessions of a Shopaholic - very funny and practically clean chick flick. It was a great weekend - and the best part was I only got sick once.

Sunday August 23 - And so we reach today. I went to church which is always exciting when you've been gone for five Sundays. I got plenty of hugs and "welcome back"s and it was so much fun to see all of my friends again! Rachel helped me do my wig with a cute braid going off to the side. Lots of people commented on how great my hair looked :) One of the members of the ward is bald and I used to tease him about it (all of the youth do - the other night at our youth activity I told him I couldn't tease him anymore and he just laughed) so I decided to give him a laugh for the day and asked him if he uses soap or shampoo to wash his head. (Honestly, it's something you'd never think about, but I really have no idea what to use. I've just been using shampoo.) He thought it was pretty hilarious and told me he uses soap. We had a family friend over for a while and had family home evening with her - Rachel and Megan were in charge of the lesson and had us act out the story of Nephi and his family going across the desert to get to the Promised Land and how Nephi and Laman and Lemuel had different attitudes about the whole process. Very fun and memorable!

I was supposed to make dinner and some cookies today but ended up passing the dinner on to Megan to make (she wanted to, but Rachel was disappointed that I didn't make breadsticks) and taking a long nap. I did get to make cookies, but I've been feeling nauseous all night so it wasn't as enjoyable as usual.

Tomorrow we go to the hospital for the last of this round of chemo and some other drug that's supposed to prevent some infection. Then the rest of the family goes to the beach while I finish up my math packet and summer reading book. Yuck. And get my backpack all ready which won't take terribly long. I can't believe school is going to start! I'm so excited - and I'm glad the first day is a half day so that I can try out my wig and see how long I last. Not looking forward to the makeup work, but maybe it'll be somewhat light the first week or so. I'm excused from PE (again) so I do have a study hall right before lunch - a nice two-period block I can use to go take a nap in the nurse's office if I need to.

Below is a picture of me with the new wig and no braces! It'll be interesting to see what people say on Tuesday...


More to come later in the week! Thanks for all of your thoughts and prayers - they're working! Cancer be gone!

Wednesday, August 19, 2009

I'm HOME! Again.

Well, actually, I have been home for 33 hours, but I am trying to finish part of my summer reading book so that I can say I have had a productive day. I got home yesterday around 11:00 am. I took a hot shower, a 3 hour nap, and had salmon and couscous for dinner. A wonderful change from the hospital menu. I only slept 5 hours because two of the drugs cause insomnia and I can't sleep. My current sleeping helps are my iPod and reading my scriptures with the help of a booklight.
This morning I worked on my math packet and now I only have 1 page left! Then I took another nap - only an hour and a half, so hopefully I'll be able to sleep better tonight because I didn't let myself take another nap today. I also went to the high school today to walk through my schedule. I drove for the first time in a while and I couldn't drop myself off at the door, so we had to walk a long way to get into the school. School starts next week on Tuesday!!! Megan got her braces taken off today so Rachel is not incredibly happy (again). We had a wonderful dinner of pot roast and fresh salad that someone brought over. Delicious! You can never get pot roast from the hospital and I don't really trust their salads.
More adventures await tomorrow: going to Old Navy, cleaning out my room, and finishing my summer reading book (yay).
Hopefully Rachel will be able to cure me of my not-updating-blog-itis (Rachel's own word) soon, so that I can continue to keep everyone posted.

Sunday, August 16, 2009

Sunday, August 16 - Chemo Day #3

Here's how the past several days have gone!
Thursday Aug. 13 - Still at home. Rachel and I walked through our schedules (fun, fun, fun!) at the high school. She is very happy that I don't really use my locker so she will be able to put her books in it. She'll be the only freshman with a half decent locker - hers is over in a tiny hallyway by the boys locker room. We picked up my retainers from the ortho - lovely clear plastic thingys that clip over my teeth and are a pain, but at least the braces are gone!!! We went out to dinner at Pizza Hut (YUM!) and visited with some friends from church and got some delicious ice cream from our local Oberweis. Mint chocolate chip - my favorite!

Friday Aug. 14 - Mom and I woke up at the crack of dawn so I could shower before coming to the hospital. We had an echo at 8:30 in the morning (ugh) which a fellow performed which means there was a teacher with him because he's still learning which means the echo took twice as long as it should have. Then we went and waited in the oncology clinic for vitals, seeing the doctor, getting my port accessed, having my PICC line pulled (YAY), and seeing the pictures of the CT scan to see how the cancer had shrunk. Even though I'm not a doctor, it was fairly obvious that the mass of lymph nodes is shrinking. The mass also had a less defined shape which the doctor says means that the cells are dying. Something called neucrosis... The chemo recipe this time consists of five drugs. I am currently on my fourth dose of the fifth drug. It's kind of crazy when you think about it - the nurses have to use these special blue gloves that are chemo tested and use special bags that say DANGER and yet they infuse it into my body. Of course, they try to flush it out as quickly as possible to let it kill what it needs to, but still, kind of ironic, don't you think?

Now more general on how the past few days have gone. I haven't been nauseous - YES! - and haven't gotten the mouth sores either - YAY! - at least, not yet. Hopefully none of that will happen. I'm getting pounded with anti-nausea meds before each chemo dose and I have this weird patch behind my ear that is supposed to help with nausea, too. I've just been lucky with the mouth sores. They eliminated one of the drugs that tends to cause really bad mouth sores, so that's probably why I've been lucky.

Dad stayed Friday night with me and most of the day Saturday. We played some games, I took some naps because I find it nearly impossible to sleep at night, and started watching the new Race to Witch Mountain. We've been catching bits of the Air and Water show - we saw some planes flying around yesterday and we've been hearing them all day today. We can't really see many because it's rainy and overcast, but a couple planes have come really close by!

Mom switched Dad out Saturday afternoon and brought tons of goodies - homemade carmel popcorn (no braces = carmel popcorn is allowed!!!) and zuchini bread along with some mail and these hats I ordered online from a gift certificate from a friend. There are three things: a pink sleep cap, a navy tie hat (it's basically a piece of soft cotton that fits over your head), and this hair piece that velcroes into hats. I'm really excited to try that out once I get home.


Here's the velcro hair that we kind of snuck under one of the hats I brought to the hospital.

This is the navy tie hat (which I have deemed the pirate hat) and my delicious carmel popcorn!

The Young Women came to visit today which was really fun! I got to see some friends that have been out of town for a while and some friends that I just haven't seen for a while because I've been gone. They were very cheering and a wonderful change from the dragging on of hospital days.
This is my Young Women's president, Sister Butler.
I'm getting an anti-nausea med in a few minutes that kind of knocks me out so we'll see how that goes. I'm getting the fourth dose of cytoxan (you can look it up if you really want to) in about forty minutes. The rest of the day consists of dinner, fluids, lots of trips to the bathroom, and a movie about President Hinckley.

Wednesday, August 12, 2009

Home Day #1 (actually #5)

Today has been CRAZY!!! I did get to sleep in, though, so I'm not going to complain. Tomorrow will be another story....anyway. Here are pictures of the past few days, and then I'll go through my day.
First of all, I had a blast at mutual last night. It was so much fun to see everyone and the activity was so creative! It was fun to see all of the seniors before they leave.
Lincoln Young is about the cutest two-year-old on the planet! He was loving playing with the train set that we have - every little kid who ever comes to our house loves it! It's the greatest toy you could ever buy for your kids. It was such a blast having him and Jen visit, even though I really only got to play with them for a few hours once they got home from Nauvoo. Anyway, here's some cute pix of Lincoln and a video of him with one of the train set pieces.

Lincoln knows his colors - here he proudly displayed the blue train for Rachel.

Lincoln was SO cute with Dad - he went around calling for Uncle Blair in his cute little two-year-old voice and read some stories with Dad. He wasn't as cute reading stories with me, but it was fun to have an excuse to read some old pop-up books :)

Lincoln went around a lot of the night going "cheeeeeeese" with this smile. He especially did it while he ate his chocolate cake - YUM! Thanks Grandma and Grandpa!


Now isn't that just the sweetest little face ever!

video


Funny story with this picture: Dad had a wonderful Sunday being Bishop - he came home smiling and singing and he wouldn't stop smiling all day and kept saying "I've had such a great day"- so when he got home and was done with all of his meetings, he got into the treats. Mom was teasing him about not eating anything healthy, which he admitted to, but then he pulled out the ice cream and started singing into a spoon. Maybe it was a had to be there moment, but it was funny at the time.


The next three pictures have to do with my PICC line. The first one, Mom is flushing my line - never a fun experience - with saline (salt water). The second one shows the levaquin antibiotic hooked up to the line. The last one shows how I truly feel about the whole thing.





And now we reach today. Mom gave me my 6 am meds which only need to be given because the pill has to be given two hours before another pill. A pain for her and me. Then she let me sleep until 9 (yes, that's sleeping in here) to take my 8 am meds. Then I showered - still so much fun to dry my head - and cleaned my room. It was covered in get-well gifts and cards, and this is probably the only time I'm going to feel like cleaning it. I was supposed to do a deep cleaning and go through my closet and some piles of papers from school, but those are currently on hold. Then I brought my math packet and AP english book down to attempt to make dents in them - neither are very fun especially when you're feeling crummy - but that didn't really work. I think I've done one page in the 12-page math packet and read two chapters in my 300 page book. Anyway, some friends came over to visit. Their kids are so cute. I grabbed some lunch before my friend from school came over. It was so much fun to see her! We talked for an hour and a half about everything - I haven't seen her since school let out!

Then we rushed to the ortho. I got my braces off today!! YAY! Rachel's only consolation is the fact that I have to get them back on. It was pretty awful - once they got the actual metal off they had to scrape all the adhesive stuff off the teeth. It was like nails on a chalkboard for 20 minutes in my mouth. But there was no pain. And they're gone so I get a retainer tomorrow and I don't have to worry about them for a long time. I got them off so that they don't add to the pain of mouth sores and the oncologist recommended taking them out so they aren't another source for infection. There's a picture below of all my bald glory with the braces gone. Uncle Jeff - I don't know why you're going in to ortho, but I hope you don't have to take too many sets of braces off that you'll have to put back on.

Megan took this pic because she didn't like the one I took of myself. This one is better, but it's hard to look good when you're bald and you have a lame yearbook t-shirt on.

I was exhausted once I got home so I took my daily nap. I felt a ton better afterwards. Then we relaxed for a bit and I worked on my math packet (yay) and Mom and Rachel fixed dinner. After dinner they left to go shopping and I've been working on updating the blog. So that's how today went!

So I'm starting to feel a little nauseous, but hopefully it will go away. Hopefully I'll be able to blog once or twice before I go into the hospital on Friday - we have to be there at 8:30 in the morning. UGH! Tomorrow Rachel and I are walking our schedules and I'm meeting with a teacher about Charity Bash - a two week period at our school where there are a ton of activities that are all focused on raising money for a certain charity. This year they chose Make-A-Wish because of a letter that I wrote so I'm supposed to give a speech at the assembly, but I might not be there. We'll see how the meeting goes.

Have a wonderful day and remember to smile and B+! I love you all!

Tuesday, August 11, 2009

CT Scan Today Shows...

Today was the wonderful CT scan to see if the cancer has gone, shrunk, stayed the same, or grown. The preliminary results show:


IT SHRANK!!!!
So I'll have to do at least 2 more rounds of chemo, which stinks, but at least the chemo seems to be working. The doctor is going to call us on Thursday with a more definite plan (the recipe of drugs to be used) and we're scheduled to be admitted on Friday. This is kind of strange - we rarely have scheduled admissions. We always go in through the ER.

The next two days will be full of excitement: I'm going with Rachel to the high school to walk through our schedules, I'm visiting a young women's leader, I'm being visited by various people, and I'm going to mutual tonight! Hopefully I'll be exhausted by Friday and will just be able to sleep through the whole chemo experience.

Jen and Lincoln left to go home to Utah today. It was so much fun to play with them last night! Lincoln has the cutest face and was so talkative and cute!

I'm getting my braces off tomorrow - Rachel is horribly jealous, but I will have to get them back on. At least they won't get in the way anymore of my mouth sores which are pretty much guaranteed to come back with chemo.

That's pretty much everything that's going on! Enjoy the rest of your summer!

Saturday, August 8, 2009

Home Again!!

I got to come back home last night!!! I am so grateful for my wonderful bed with soft sheets and squishy pillow. I didn't sleep a ton, but at least it was in my own bed. I am also incredibly grateful for a wonderfully hot shower which has now been cut in half because I don't have hair to wash. :) And the food at home is SO much better than the hospital food - even if I have to fix it myself.

So here is how the first night home went: Mom and I got home around 3 and I went straight upstairs to sleep in my bed. Dad came home from work to help with getting prescriptions and other home-care stuff. Mom got my med schedule all written out for the night before she had to leave to go pick up Rachel from band camp. I came home with a PICC line - a semipermanent IV - which required some equipment from home health. When that was delivered, Dad figured out how to flush my line and run this antibiotic that the doctors wanted me to finish with the PICC at home. The drug - levaquin - is the weirdest thing. It comes in this ball that automatically infuses without a pump or beeping or anything. Here's a pic of what it looks like:
Dad and I watched George of the Jungle while that infused and I took all my meds. Rachel and Mom got home late so we all went to bed kind of late, but we enjoyed our night together. I forgot how much I missed my family members - Rachel just has that positive energy that keeps us all laughing! It's kind of weird only having the four of us home - Megan and Nathan are with Jen in Nauvoo - but it's been fun spending time with Rachel.


Today has been eventful because we got my wig!! YAY! The morning began with the home health nurse, Joanna, coming by to draw blood off my PICC (yuck) and then a nice hot shower! Rachel slept in, so I read for most of the morning while Mom went to the temple and Dad ran some errands. Mom has been amazing at figuring out my med schedule and getting everything done on time. My meds have overrun the kitchen table - tomorrow we will be finding a new home for them.

Now for the wig. My friend who lives down the street has a disease called alopecia which makes it so her body doesn't grow hair normally. Her mom runs a salon where she specializes in doing wigs and hair pieces for other people with alopecia, or people like me who lose their hair with chemo. She was able to get me this really nice wig and we went to pick it up today. She gave us a bunch of stuff and showed us all how to take care of it. Dad and Rachel tagged along, so at least four of us know how to take care of the wig. It'll be fun to wear it to church tomorrow! Here are pix:


It's pretty fun to be able to put my hair on the styrofoam head :)



The bandage on my arm is covering the PICC line - there isn't anything wrong with my arm.


That's all I have energy to write about tonight. Thank you for your prayers and thoughts and cards! I know I'm home and doing so well because of your faith and prayers.

Thursday, August 6, 2009

Thursday August 6

The past few days have been kind of rough, what with my hair falling out and just being sick of being in the hospital. Yesterday was just rough with me feeling depressed. Mom and I watched the Wedding Planner (very funny movie) to take our mind off of everything. My aunt and cousin and siblings came to visit again yesterday so it was fun to see them all. Lincoln was so adorable - he gave me the biggest hugs - in exchange for some candy of course :) They left for Nauvoo earlier today to visit my Grandma and Grandpa.
I had a heart biopsy scheduled for this afternoon so I wasn't allowed to eat until after the procedure. I was starving by the time I went back for the procedure at 2 in the afternoon! The morning was rough - I had two random nausea attacks which we quickly suppressed with some anti-nausea med which knocked me out for a while. Mom and I watched a cool Oprah today about animals that people have formed bonds with. One couple has a pet hippo and another elephant on a reservation was best friends with a dog. I caught up on emails before the nausea attacks, too. So I pretty much slept until the biopsy which didn't take too terribly long and then I pigged out on sandwiches. I haven't had a sandwich in so long - it was delicious!! Turkey with american and swiss cheese, two dill pickles and lots of mustard! YUM!!
Barb, the mom of the girl I got my second heart from, came to visit today. She brought me some chips and onion dip which I have had the biggest craving for for no good reason. So that just made my day even better!
Now we've finished battling with residents about medications and getting home tomorrow, so we're going to sleep and hopefully have another wonderful day tomorrow!

Tuesday, August 4, 2009

Video of MY HAIR!!

video

I wouldn't wish this on anyone!!

The Pictures...

Here are the pictures as promised. My head is ugly and mole-covered, but I can deal with it. I do already have a wig picked out and as soon as I leave we're going to get some pix with it on. But here's what we have for now.
This picture was taken Monday - the day I LEFT the hospital.
This is what has occurred since then - most specifically the past 48 hours:


It is the strangest sensation to put my hand to my head and feel little wisps. My head is kind of cold, but it's kind of nice to have the hair off of my neck. There are a couple of parts that are hanging in there, but I'm sure they'll be gone before long, too.
My nurse, Lindsie, brought in some hats to try on for fun.



This is the one we decided to keep - it was one of the less eccentric!

Thought you'd enjoy these two! We kept the orange bow one for laughs.



GO BEARS!
My adorable cousin Lincoln came to visit!! Along with my aunt Jen, of course. He is so big and talkative!

He was very helpful in opening up a present for me.
Isn't he CUTE!!!!

So that's what's been happening today in room 403!

Hopefully more excitement will come tomorrow!!

The Days Go On

So I'm still here at the hospital, but at least it's me telling the story again and not one of my wonderful parents or siblings.
Sunday was a great day. Amber (my friend) and her Mom came to visit which brought much needed cheer! My hair began pulling away from my head in clumps that day which were extremely itchy and painful to sleep on. Sunday night we moved up to room 403 away from the noise and lights of the wonderful PICU. I slept SO much better with the help of some pain killers and ativan.
Monday was another wonderful day. I was finally able to sleep, so I slept most of the day. Mom and Dad swtiched each other out for the night. When I did wake up, we finished tearing out my hair which was an absolutely awful experience. I'm going to put on some pictures later. Dad and I watched National Treasure 2 (amazing movie!!) and then went to sleep. My head didn't itch for the night.
Tuesday has been another wonderful day. It was really hard to actually look in the mirror and see my two-and-a-half years of post-chemo hair was gone. So there's been a lot of crying today. My aunt Jen and her two-year-old Lincoln came to visit (they flew in to Chicago to go see my grandparents who are out in Nauvoo). He is so BIG and CUTE!!! It was rather ironic that I was supposed to be visiting them in their house today - not them visiting me. Oh well. I'll take a big vacation next summer. We pulled out the rest of what there really is to pull out and cut off the bigger chunks that looked awkward. We also tried on a bunch of hats which was kind of fun. I'll put on some pictures in the next post.
Thank you so much for all of your thoughts and prayers. Thanks for helping out my family during this trial. You are all amazing and I love you all! Tomorrow brings visitors and an echo - perhaps another step toward home!

Sunday, August 2, 2009

Some Improvement

Sunday afternoon - Aug 2
Lauren is showing great improvement today. She is moving out of ICU and is off all the heart support meds. Her body is responding to the antibiotics, although we are still unsure of the actual bug. This all could be just an inflammatory response to the chemo. You can always tell when Lauren feels better becuase she begins to talk and give directions. She can feel the effects of fasting and prayers on her behalf today. The saddest part of my day has been combing her hair and having tufts come out on the brush. We read 2 Nephi 4:20-35 and inserted phrases that applied to her life. It was a sweet experience. Renee