My Dad visits... a post I should have added a while back

For the past month or so my dad and my moms friend Donna have been going back and forth on coming up to colorado for a visit. Finally on Wednesday they decided to come up! YEAH!

Friday we met up in Denver (Donna, dad, me, mom, and Laura) and went out to dinner together at a restaurant that Laura liked and thought would work for everyone. It was an Italian restaurant. Well it was too spicy for me :( which I am getting slightly used to by now. Not exactly having any fun with it, chocolate doesn't taste the same anymore. I'll eat just a little bit of it and end up saying to myself "well that wasn't worth it :/ " 

My Dad is very adventurous although you might not be able to notice it just looking at him. He still rides roller coasters even the ones that go upside down, he has all these projects that he dreams up, he comes up with his own games to teach us. He likes bikes, and this is where the story comes in. While we were at the Smith's their two sons and a neighbor kid decided to make bike ramps and my dad decided he wanted to try it too. So picture this, a 6 foot 2 inch man on a bike made for an 8 year old. Funny already right? To cut to the chase they built a ramp up onto the trampoline and my dad tried to give it a go. He's an entertaining one, he is!

I think my favorite part while my dad was here was when we went on a walk together and just talked. I miss him a lot and it was so good to get to be there right along side him. 

It was also really fun because I brought up a puzzle and we all put it together. I like puzzles and I need to get something because I can't leave a puzzle on our kitchen table for a week slowly working on it.

Sunday we went to church in Lakewood to meet up with some friends of mine from Fort Collins who have  moved to the Denver area. We were going to fix them lunch after church and they were going to meet us up there. Well I like to talk to people so after I told Sara and Michael good bye I started talking to Kelsey's mom and the preacher in the lobby. After awhile I noticed that there was no body else in the church besides us and another man. I tried calling but none of them would answer. I felt like a child lost in a grocery. Thankfully Kelsey's mom gave me a ride up to the Smith's house, and even made it there before my dad and Laura did!

Dad if you are reading this, LOVE YOU BEAT YOU!

It was hard to say goodbye :*( See you at Christmas! 

September appointment

Infusion
Mom and I spent a long time at the hospital on Tuesday. First off my nurse needed to help another nurse who was having problems with getting a stick on an older gentlemen. Caitlin (my nurse) got me on the first try on old faithful, but we stayed in our little cubicle until my mom started trying to peek over the top. Guess that meant that chat time was over.

After I got my blood drawn, we made our way to infusion got my weight taken and went back to my chair. They know me so well Justin (another nurse) came back with a heated blanket and a pillow and said I'm still looking for the heating pad. They couldn't find it so they got another blanket and wrapped my arms up in it. My infusionista told me they had my avastin already prepared for me! They were on top of things Woo Hoo.... temporarily. Well I have lost a significant amount of weight since they last calculated the dosage for my infusion and my nurse noticed that it was more than 10% too high. Needless to say it took almost two hours to finally have my infusion.

Other than that, things went smoothly. The nurses and the doctors there are great!

ONE DAY MORE!

For those of you who don't know, One Day More comes from the musical Les Mesirables which is a play based on the book by Victor Hugo. I haven't read the book, I own it but never got around to reading it. I've been really excited to see it, I've had to wait a very very very long time. We purchased the tickets back in December of 2010. In February, when my doctor told me the bad news regarding my cancer, I was afraid that I might not even be able to make it to the show. But as I reflect on it now, even if I did not have cancer I might not have made it. Life is unpredictable we never know what is going to happen in our lives.

So I am very thankful that God kept blessing me with One Day More, which is one of the themes of the book. I went in to the show not knowing much about the story line but I was very pleasantly surprised at how one of the central theme was forgiveness. Being forgiven and forgiving others. When I first got to the theatre I wasn't feeling all that well and I had a headache but after the show was over I realized "I feel good! I don't have a headache!" I think it's amazing how God can use so many kinds of media. I feel that He has been relaxing and rejuvinating me through through the art therapy class I have been attending along with the the play. I like using that portion of my brain.

I had an appointment with my oncologist on Tuesday nothing too exciting except for the fact that... NO MORE STEROIDS!!!!!! I GET MY FACE BACK!!!! I am going to have to wean off them, but they are going to be going away Lord willing, most of it depends on how I feel as I am taking myself off of them. It was a long day. My appointment was at 2 and I knew I would be having my lomustine and that I would need to take it on an empty stomach therefore I ate lunch around 11:30 before we left for Denver. Well we got there and I didn't get to see the doctor until after 3 and it was close to 4 before we made it over to infusion and my anti-nausea. I then had to wait 30 minutes to take the lomustine, after I took the lomustine and had to wait at least an hour to eat. I was done with my infusion and I was hungry! It was about time for rush hour traffic and we had an hour to get to the Smith's.

On our way up to Wanda and Stacey's I found out that Laura and I had a miscommunication that would end up changing the plans that I had made for the week. I was done with it, I didn't want to think anymore, I didn't want to plan anymore, I was silent not knowing what to think or do. I had to stop, I needed to stop going towards something being so unsure of what was going to happen. I was hungry, I was tired, I wanted to stop moving. Mom pulled off the highway so we could collect our thoughts and figure out what to do. Got in touch with the Smith's and they agreed to take me into Denver on Thursday evening. I am so unbelieveably thankful for this family they are such servants of God willing to help out those in need. They have such great faith and trust in His will for their lives I am also so very impressed by how they are raising their children, they make a wonderful team. They have such great faith and trust in His will for their lives going on one day more.

Wednesday I spent most of my day in an RV up at 8,500 feet. I went walking by myself on one of the trails and took a wrong step, stumbled and rolled down the hill a little bit. I was scared and I can still remember the swirls of debris that went by in those couple of seconds. I am so very thankful that I was fine and no scratches or bruises. However I ended up getting dirt all down in my jeans, it was not very fun climbing back up the hill. I think next time I will bring a walking stick and wear spandex.

While I was in Denver we went to visit the botanical gardens. They had such beautiful flowers from around the world. I was once again awed by the degree of intricacy that God has but into His creation. How there can be so many varieties of the same flower along with coloration. I wish it had not been so hot that day. I did have trouble really enjoying the scenery all around me due to the heat. But I am thankful for the wheel chair that they carted me around in so that I didn't have to wear myself out too much.

As Laura and I were driving up to Fort Collins I wasn't feeling that well so I was trying to do my best to rest. I was looking out my window and I saw a rainbow, a full rainbow, no, two full rainbows, one of which was a reverse rainbow. It was so majestic. I couldn't stop looking at it. God remembers us, He is thinking of us! And then after awhile some clouds came in and to me it looked like there was a dinosaur vomiting up a rainbow. Just take a second and get creative with me. As I kept looking at it and taking pictures it looked as if a dove with rainbow in tow was flying into the mouth or the dinosaur to destroy it.   What amazing symbolism I thought to myself this great big giant beast (Satan) and a beautiful dove (God and a symbol of love) going in to battle with the beast because of His love for us. Every day there are unseen battles between the demons on this earth and with God and his angels for our lives. Fight that battle too against those demons that are speaking lies in our ears. Fight against those demons One More Day. GOD IS VERY NEAR

I forgot how much I loved puzzles. While I was at the doctors waiting mom and I worked on a puzzle. We didn't get it finished :( Well one day Laura and I went to the thrift store and I ended up purchasing 5 puzzles. Mom, Laura and I took the 100 piece puzzles and had a race to see who could finish first. Laura won, she's good!

I was watching the track and field world championships earlier this week. It is amazing to see how fast they can run, how they push themselves. How amazing God is in how He fashioned our bodies, that they can accomplish such feats. The athletes have really conditioned themselves to prepare for this race. Even though not every one is an athlete we still need to train like one. We need to condition our heart, mind and spirit to finish this race called life so that we can cross underneath those pearly gates to hear Him say those beautiful words well done my good and faithful servant.  I've seen several people take some stumbles but they get back up and continue their pursuits. No matter the outcomes they are ready for One Day More of training to reach for their goal.

I have pictures but I've been trying for almost two hours now to edit them which I was able to figure out how to do some of it but not all I wanted to but then I could not figure out how to get them uploaded on here. I am very frustrated right now.... grrrrrr..... pictures will come eventually... I am moving on to my next task for the day!

What I've been up to

I'm trying to get myself back into a version of my old normal. I want to believe that I can get back to that but at the same time cancer changes you and your priorities. I hope that I can get into a better normal!


As many of you know I used to love love love running I would run several miles a day. My favorite was to run outside on trails, I really do not enjoy treadmills. I also remember that after my first spinal cord surgery I was running again within two months. I wanted to be up and moving and I did it and got back into the to gym to build up my strength. All of this was very relaxing and made me feel good from the inside out. Running was especially a wonderful time because I spent the time praying and asking Him to give me the strength to finish my goal and to never give up. Also there was a time I was running at night and I was at least another half mile from my house and I started hearing the coyotes howling. I was scared and was sprinting so extremely fast to make it home praying with every breath I took!


Well as for the new normal regarding exercise (currently) running has been out of the picture for a couple of  years =( I did have a spell for about 6 months where I was able to go to the gym but not near the intensity that I used to be able to. Right now my exercising is done for the most part at home in maybe 5 minute increments. I have 3 lb weights, a 4 lb medicine ball, stairs, a jump rope and now a bike which I have had at the Freis house for probably 3 years. I'm not sure if the bike is going to work but went ahead purchased a pump and helmet the most comfortable one they had! As for running, it is too jarring for me =( Plus something that makes me sad is that I can't handle being outside in the heat for too long. But the positive thing is that I am working on my health by doing what little I can. My cancer twin told me about how Miramont fitness allows a free 6 month membership for cancer patients. I called earlier this morning and hope to hear from them soon.


As for friends I used to have people over at my house for movies, games or food several times a year I also lead a Bible study for awhile. Before I would be able to go to the events that they would plan, I was very involved with the college group and would be at most of the studies and events. For a long time I knew about what was going on but as I got deeper into my treatment and people would call to hang out I would have to tell them no because I wasn't feeling well enough to go out. Eventually those calls basically stopped. It was sad and I really missed those relationships. It was very difficult for me to want to call up someone and have them over because I did not feel well and I didn't feel like doing anything so I felt like there was no point. I realize now that I wish I had kept up with those relationships and I'm trying to build them back up.


So that is something that I am trying to get back into. I've been inviting people over for dinner and movies. I've also been looking for free things we all can go out and do together. There are a lot of free things in the summer some of it requires more driving than I am willing to do but I suggest that anyone who is bored spend some time on the internet or look in your local paper for events you will be surprised at what you find. Below is Cherelle, Kelsey and my mom at centerra waiting to watch how to train your dragon. The movie was free and they also provided free popcorn and cotton candy!

I've also been making reading my Bible a priority along with my prayer journal. I temporary lost it while I was in Missouri and I was very sad. It has a lot of emotions and fears along with praises in it. Sometimes it's easier to be able to write out something than to tell someone about what's going on. And it is something I can go back and look at to see how far I've come over the years. 


One of the most recent things I have started is art therapy. I've always enjoyed art and crafty things and wanted to be able to paint and draw and do artsy things like my little sister does. I also love going to different art galleries and seeing the beautiful photos and art work. Just a quick promotion every first friday of the month the is a free art walk in old town with music and snack foods at the galleries. Instead of buying cards and gift bags I design my own, although I am still sending out store bought cards most of the time. I have them so I might as well use them! 


Another thing that I have started doing is going to support groups. I always thought about going but at the same time I was scared to go by myself. I used to be very out going. I still am outgoing but it's different mostly because it is regarding my health. I don't mind talking about my health it just can sometimes get to the point that I talk about it too much, it keeps my mind focused on the fact that I have cancer. I'm in absolutely in no way saying stop asking about my health, I am more than happy to tell you and I love being able to tell you about the healing that God is doing in me, but just ask me something else about my life also. There are several things that I do and am excited about. I'm living through cancer and enjoying it because I am living!!!

Feeling pretty good

First of all I have wonderful news! I had an MRI Monday evening to have scans of my brain, cervical, lumbar and thoracic spine basically half of my body. I was so excited to know that I was going to have the fast machine! Woo hoo!!! That means that instead of taking about 4 hours on the slow evil machine it would only take a little bit under 2 hours on the super awesome fast machine. The difference is in the software not the machine. You would think that all of the machines would have the same software. They would be able to save people the pain of having to be still for so long and they could see more patients. There is not much to do while you're getting an MRI done. Especially if you have to have a brain scan, they won't allow you to listen to any music and they don't have a radio they can play. It would be very hard to hear it anyway given how loud the machine is! 

Most of the time I use it for a time of prayer or singing in my head. One of my favorite singing adventures is to try to remember the songs we used to sing at church as a little kid such as the B-I-B-L-E,  fuzzy little catapillar, if the devil doesn't like it you get the picture. This time I decided to make up names for the different sounds that I hear.


Here are the ones I remember:

• yummy
• vibrating circle
• machine gun
• pulse 7 respond 7
• cardiac arrest CPR - 
• get up alarm
• yippie
• get em up bill
• the bubbler
• annoying beep do do
• do it alarm
• start up
• fozzie bear (waka waka)

MRI comparison (Feb and April)

MRI (Aug)

I am heartless

The doctor told me I was stable! There has been no new growth! Praise God!!!!!  I am still having issues with headaches on occasion and found out that my ventricles in my brain are a lot smaller than they should be. It is most likely to be caused by my shunt because it is not set to the correct setting. In order to adjust it they would have to do another surgery and there is no way to assure it will be set to the right pressure this time either. The headaches are manageable and I would rather not have to undergo another surgery, even if I think scars are really cool and tell some fun or interesting tale.

I often get very cold during the infusion. The liquid medicines they are infusing into your body are often room temperature or slightly cool from just coming out of a refrigerator. They are not going to be warming you up. I asked my nurse Justin to bring me another blanket to put around my shoulders and this is what he came up with. I felt like one of those old women who people would go to to for her healing powers. Or a wise woman who people would travel all around the world, maybe just very long distance, to inquire of their upcoming life or advice on things that are happening currently.

Thank you all for your continued support and prayers to our God! He is the great physician the master healer. He has changed my heart and moved me into a closer relationship with Him. If I didn't have this struggle in my life I don't believe I would have the same faith I have now. As christians we are not promised that we will have an easy life on this earth it's actually opposite he guarantees that we will have struggles. And I pray that in every struggle I (you) will look to God for his strength and shelter under his wings. God is love, He cares for us and is always with us. He's just a prayer away!

I'm back! AGAIN!

So after my adventure in OK and MO I was able to chill, my form of chilling. I was able to help out a little bit with VBS, my job was to take pictures of the various groups and the activities they were doing. The kids were having so much fun! I didn't make it the last day, I just didn't feel well : /

I then proceeded on my way to UT. My friend Kalla Paige let me stay the night at her house since my flight left around 7:00 am. Neither one of us did much of anything, just sat and talked which was awesome!

I made it to UT. It was so great to see Whitney! To be able to have a friend who has known you pre cancer and have so many other things to talk about besides my health. Don't get me wrong, I don't mind updating people on my journey and I am so appreciative of all of your support and prayers to our Maker.

It was a relaxing trip, even though we did several things. Most mornings we would get ready and then head over to a park to read. It was beautiful out there. It was the perfect temperature underneath the shade of the trees. It was great just being out in nature looking up at God's blue sky above being framed by the tall deciduous trees. If I hadn't been taking a break from reading to take in the beautiful surroundings that God had provided us for that day I would have missed it, a blue heron flew across this frame that I was looking out. God surprises me with all the things he has created. Everything has beauty in it's own way.

We went to see Harry Potter, we watched part one of the seventh movie the night before. I was slightly under whelmed with part two. I would have liked to see more of the other students fighting. And although it has been several years since I have read the seventh book I noticed several things that were missing. But on the other hand I understand that it is difficult to turn a book into a less than three hour movie which is why they made two. I still loved the movie, it's Harry Potter, it has been in the making for, what, 13 years now?! It is kind of sad that this is the end. One guy in the theatre yelled out "what am I going to do now?!".

I taught Michael and Whitney hand and foot. I didn't teach them exactly right. I didn't remember the scoring so we just played for fun. She beat me the first two times we played. It did her very well to pick up eight cards when she had the opportunity, a risk I used to rarely take. We also played nerts, the game where you play a form of solitare and also build up piles in the center of the table that everyone else is playing on.

Whitney and I went to a go paint place. I told her it would most likely take around three hours. She didn't quite believe me. Well we were there for almost three hours. She made a serving dish and I made an alligator memo board for my nephews. I really enjoy doing this activity of ceramic painting. Although I rarely try to do something where I have to decide the design. I like to just to pick the colors and go with the design that is already there. I usually need to be inspired by something that has already been painted.

I left on Thursday morning, mom picked me up and we went up to Evergreen CO for the night to visit Wanda and Stacey and their boys. I was really tired so I didn't do much :( Mostly just relaxed and read more.

Friday mom and I made our way to Co Springs. We didn't do too much, we watched movies, played the wii, and I did more reading. Just to give you an idea, I started this trilogy when I was in high school... I've had the second book for about a year and am about half way through it. I just haven't been doing much reading and now I am realizing how much I am enjoying it.

We went to an improve show called stick horses up at palmer lakes, one again a beautiful site even with all the trains in the area, it made it more unique. The show was pretty good, it made me laugh. My mom suggested a razor for something that you could put in a large box and I suggested an oompa lumpa for something you would go window shopping for. Sunday night Tri-Lakes church was having a grill out that along with home made ice cream! After we had our over fill of food mom and I made our way back to Fort Collins!

It's good to be home!

I'm back!

I have spent the last week and a half in Oklahoma and Missouri and am now back to update you all on my doctors appointment and my trip!!!

Doctors:
No new information to update you on. Received my Avastin and lomustine. My appointment was in the afternoon around lunch time  I got my own little room with a bed and a TV that my mom and I could watch and eat our lunch. The nurse comes in with my anti-nausea and I was about to take it until I realize I needed to wait a little bit to take the antis and then wait a little bit longer after that to take the lomustine. Needless to say we were there a lot longer than we had expected to be.

The next day
Airport:
I had quite an interesting time at DIA. I arrived at around 10 am because my mom had a flight at 11:30, my flight wasn't suppose to leave until 4:30. So I waited with my mom until she left and then I found a little cafe bought some chai and read the book Polishing God's Monuments until around 3. I then made my way to the gate and found out that all planes were grounded due to microwind bursts people were being rerouted and flights were being canceled. To make a long story short my gate was switched 7 times (I moved each time) and then got cancelled around 7:30. I bypassed the customer service line and went to the very front asking the couple if I could cut in front of them giving them my reasoning. Turns out they were boarding a plane to Springfield that would be leaving in ten minutes, she gave me a ticket and I booked it as fast as I could to this new gate.

I try to see God's purpose in our lives when little things like this happen, when things don't go our way. As I had previously stated I was reading a book and the last chapter I read was concerning how God's ways are mysterious and he has certain events occur partially so that we can connect with others.

Lots of things happened in Missouri:
My mom's car overheated luckily we were able to get a rental for the weekend
My grandma had a massive migraine and lost control of her body and had to go to the ER. They did MRI's,  CT scans, heart scans but they couldn't find anything wrong! Praise God

My dad's car overheated
Rachels van overheated
Our basement flooded
Family got in a fight, got resolved
Got to break beans with my grandma, sister Laura and my nephews

Oklahoma:
Had a good trip, saw LOTS of family! Most of whom I didn't know, my cousins got married and have started having children. Have I ever mentioned that my mom was the youngest of 11 kids (my mom and uncle Roger were fostered) The oldest of the group had a child himself that was very close to my moms age. So her brothers and sisters have had kids who have had kids. I haven't seen them for several years so in the end it was a great time!

More Family
First of all I was so surprised to find out my mom's biological family had driven in. Rachel spilled the beans, she didn't know it was a secret. I hadn't seen most of them since I was 10 and then took a trip to Ohio in 8th grade. It was so so so so so great to get to see them. Sunday we had brunch at Cracker Barrel and went back to their hotel to hang out until they all had to take the long journey back. Hopefully we will be getting together again next year. Temporary plans, Branson MO.

The Benefit
The bands were great. One of the guys who played was the father to some kids that I rode the bus with. The food was very tasty, pulled pork! The auction went very well. So many people donated so many different things. There were LOTS of homemade baked goods along with home made quilts. Several places from the area donated gift cards or their services. One guy donated a one hundred dollar bill and it sold for $135. Saw lots of people even my grandpas siblings and their children and their children. Thank to all who came and enjoyed the day despite the heat.

Christmas in June?

I have officially caught up on my daily Bible reading! Woohoo! I stopped doing the devotional (that my sister got for me) along side with it. They asked the same four questions each time. My prayer journal was found while I was still at home. I try to write one page each evening but I’ve been writing all the way to the bottom of the page and even around the edges and the top. The pages aren’t that large so the next journal is going to be bigger.

I have decided to go on an unpaid leave of absence from work. It was a tough decision but I feel it was the right one. I feel that in order to do certain kinds of research you need to be able to be there consistently and sometimes for long hours. I am not to that point yet but I am slowly getting there.

People keep telling me not to push myself but I do know that for myself and for me to gain the ability to work again, I do need to push myself a little each day. Last night I walked for at least 25 minutes last night along with doing exercises earlier in the day. I do sit down a lot in between my daily activities.

Because I am taking this absence I am able to help out more with various activities that I would have felt guilty for if I was working. I am excited to finally be able to help out with VBS at church!!! I am hoping that a couple of my friends are going to be able to come out and visit and I won’t have to worry about the experiments that needed to be done.

I am also super excited that I am going to the Hamm Bash!!! It is going to be crazy! I am 100% sure that there are going to be lots of people I don’t recognize! But I am so excited to go. Mom and I have been working on our homemade crafts. I hope people like them!!!

Saturday mom and I decided to get out of the house and go to Glen Haven and Estes. We were gone a lot longer than we had expected to be. I got to feeling kind of bad while we were in Glen Haven. While we were in Estes we were walking around and we found a free trade store. I loved it!!! I want to find more of them. I’ve heard of them and I am so jealous of my sister who went to one down in the Colorado Springs area and got a purse made out of the inside of a tire. I want one too!

I also have a good portion of my Christmas shopping done. I’m going to be wrapping presents this week or next week to ship home to Missouri. I almost want to keep what I got for most people. But I know that they will all like what I got them. I even got things for my cousins. Every year I say I am going to get them something and then I end up not finding anything that I feel like they would like.  I am finally learning!

For those of you that live in the area, every Friday in June and July at the Centerra shops at Loveland (between The Bent Fork and Build-a-Build) they have a free kids movie starting at 9. Some of my friends and I have gone to a couple of them, Karate Kid and Mega Mind! I really liked Megan Mind, it had lots of scientific comments and of course I was with my roommate Cherelle another chemistry graduate student and our friend Kate who is the teacher I worked with in chemistry and freshman science classes. Needless to say we were laughing when others weren’t.

If you all could, please pray for my friend Lindsey and her family, her mother passed away on Sunday morning.

June Dr's Appointment

My platelet counts have increased to 71 (which when I say this number and the ones before it really means 71,000). However the doctor decided not to do the infusion or the chemotherapy. Didn't want to do the infusion because of the nose hole, she wants to make sure my nose is healed before she gives me another treatment. She didn't give me the chemotherapy because my white blood cells are too low. And thats about it.

I have a hole in my nose from beginning of June

I immediately woke up the other day with a nose bleed. NOT COOL! I called the health center and got an appointment for later that afternoon. Saw the doctor and he referred me to an ear nose and throat doctor. Just happened that the two doctors had the same name. I really confused the receptionist at the doctors office when she asked me who referred me to their office. My ER doctor along with my oncologist had told me they hadn't seen anything during my previous appointments when I told them I had a hole in my nose. Well the ENT doctor stuck cotton pieces up my nose, not comfortable, to clean it out. When he took them out he found that I had a hole in my nose that was 1.5 cm in diameter! That is huge! At least I think it is. The reason the nose clip wasn't working was because the hole was closer to the front of the nose instead of the back of it.

The doctor cauterized it using silver nitrate. Turned the inside of my nose a purple/brownish color which was visible because of my high nostrils. I was miserable! My nose burns my throat burns. I don't like this.  :(

I went to my first cancer support group on Thursday evening. Everyone was so friendly! Most of them were older but my cancer twin was there.

Also did my first relay for life on Saturday. I was very disappointed that they didn't let us go the complete 1/4 mile! I really wanted to do more but knew I shouldn't. I also just wanted to start running I really really miss running. Just being on the track was so invigorating! I felt powerful remembering all the times I would push myself to go further and to never give up. It was a wonderful time to spend with God. I will run again!

Platelets

I left for Missouri with a platelet count of 51 (I believe they are suppose to be at least 150). Mom, Stephanie and I left from Colorado around 8 on Thursday and drove straight through to Missouri. It wasn't too bad because we had 3 drivers. The weather was off and on with raining and strong winds :( But we made it!!!  As we turned onto our road I saw fireflies!!! I was so excited!!! Then as we were coming in we were attacked by June bugs, not fun :(

Friday mom and I spent most of the day cleaning. I mostly worked on laundry and dishes.

Saturday I spent the day with my grandma playing dominoes and going through pictures. That night my family went to the benefit dance. I felt so blessed that my moms friends set this up for me. They had a dance, a silent auction, a raffle and of course food! I'm not much of a dancer, but I think I finally got the electric slide down and the charlie brown! I had to be careful though and take breaks frequently. On my way home I stopped by wal-mart and my nose started bleeding I just sat down holding my nose until it stopped, it took about 20 minutes :(

Sunday I went to church at Strafford with my dad and two of my nephews. Since my nephews were so good we let them play at the playground and we took them to McDonalds. I spent half of the day with my grandma. I brought my daily bible and did some reading. I was however slightly distracted by how quiet and calm it was. I could hear the gentle breeze and the birds chirping outside the window. It was beautiful! Thank you Lord. When I got home I learned that my mom was going to be spending time with her friend Barb. So I decided I would take up the responsibility of getting the house in order.

Monday I spent most of the day doing laundry and cleaning the house and taking care of my 3 nephews. I had insisted that Rachel and Michael go into town to run their last minute errands since Rachel was going to be induced on Tuesday. Around dinner time my nose started bleeding and wouldn't stop. Mind you I didn't stop doing everything because I was preparing dinner for the boys. Eventually I got to sit down to stop it but I'd get up and start working again and my nose would start bleeding. Eventually I called my mom and told her I was scared because it had been about an 1.5 hours and hadn't fully started bleeding. I did call the on call neuro-oncologist and told me if it wouldn't stop bleeding to go get it cauderized. Mom called Rachel and Michael and everyone was on their way back. By the time they got home my nose bleed stopped. The bleeding stopped long enough for my family to resolve some issues. I was getting up to go to bed and my nose started to bleed again and I decided to go to the ER around 10:30. Since I was going to be at the hospital I decided to have my labs done since my oncologist wanted me to get them done on Tuesday, I figured it was close enough to Tuesday. We got to the ER and immediately got since to the back, it was because my immune system is compromised. The doctor didn't give me too much advice that I didn't already know about. He did give me a nose clip that should help stop the bleeding. After that every new person that came in the room I joyfully asked are you going to take my blood?

I found out on Tuesday that my counts had dropped to 31. My sister had an appointment to be induced but when she called in they said that they didn't have any availabilities for her. They told her to call later and when she did they said that they had just admitted 3 new patients. She was very upset. Eventually around 1:00 she was told to come in. She had Megan Sophia (she is going to go by Sophia) at 7:57 pm weighing in at 6 pounds 10.5 ounces. She has bright blue eyes and long blonde hair. She is so incredibly cute.

I got the chance to have lunch with Brenda, I used to babysit her two girls who have grown up so much! I'm so thankful for her. She is an optomatrists and I went to her office to see if I could find some new glasses since I've been wearing them a lot more because of my extremely dry eyes. I was so excited to find them but ended up feeling even more blessed to have her say that she was going to buy them. For those of you who wear glasses you understand how expensive they can get especially if you have bad eyesight like me. I also had my labs done and they had dropped to 27.

While I was home I got to see my friend Amanda and her family came over. She has a 10 week old, Kaden. He seems so big, but that is most likely because sophia seems so very little.

I went to church in Fair Grove with my Grandma. Sunday night my sisters and I went through the shelves that contain some of our childhood memories. Finally got to bed around midnight but  my nose started bleeding.  I tried several different methods and combinations of methods but couldn't get it stopped. Finally around 3:30 in the morning I walked upstairs to my moms room and told her I think I might need to go back to the ER. She was able to calm me down and to get the bleeding to stop.

Monday was my last full day at home, I had been in town to get my labs done again along with visiting with my friend Laura and her daughter my labs drawn which tuned out to be at 24 now even with the resting I had been doing. When I got home two of my cousins were there with their kids. My aunt Charlotte also came over. It was so great seeing them. I'm very glad they came out to visit I had wanted us all (whole family) to get together for a game night which we typically do but I was in no condition to plan it or really have the energy to do much with them.

Mom and I flew back to Colorado incredibly early Tuesday morning. We almost didn't make it to our second flight. We got to the airport a little later than we had planned but still with plenty of time. However we had to stand in the line for an unusually long time, they were having issues with printing boarding passes and luckily the flight was delayed. We got to Memphis and just barely made it to our next flight, they had been trying to find us, we were the last two people to board. My friend Carlos picked us up and drove us back to fort collins. Home sweet home.

Don't get me wrong, I LOVE being home, but it is very nice to be back in CO. There has been so much going on in Missouri it has been hard to really relax. So I'm hoping that I'll get some better resting accomplished while at home.

I have the house COMPLETELY to myself

.... minus the cat... she is still here.

This is the first time in awhile now that I've had the house to myself. Kelley went to California for the next couple of weeks, Cherelle went to CoSprings, my mom and Stephanie also went to CoSprings to visit my sister Laura. I've been so productive this morning. I woke up at six, read my bible, made breakfast, did my brain exercises, did some laundry, updated my journal for my grant, did some basic cleaning and now I am working on updating my blog and it's not even 10 yet! It is very relaxing. No TV, no music, just the hum of the laundry spinning around. But alas time to get ready to go to graduation celebrations and see my great friend Sara and her family!!!

Austin visits

I promised an update on Austin visiting so here it is:

My friend Austin from Harding came to visit me! He is the same one who I visited in Hawaii. He got in on Monday and we went up to red rocks and had lunch. We then went to Evergreen and ended up at a place called go paint and we painted ceramic pieces and had them fired. He made/painted a kleenex box for his Father and I made a hot plate for my grandma and a hippo for my soon to be niece. They were great to us staying open for an extra 1.5 hours. We then went over to Wanda and Stacey's house and they had steaks, fries and green beans all ready for us.  Austin felt like he was breaking and entering someones home and stealing their food. We then drove back down to Denver to get to my MRI appointment at 9:15 at night.

Tuesday morning mom, Austin and I went to Vern's for breakfast. I love breakfast! We then went to Horsetooth reservoir and didn't end up staying long because it was so cold and windy. We then went to the spa and got massages. He had just finished his finals and I just needed a massage, and it was awesome! There is a new spa called buzz and blitz, I definitely suggest it, unless you like deep deep tissue massage which I don't but Austin does. Before we went back home we stopped by Men's Warehouse to surprise Lindsey.

Wednesday mom, Austin and I made our way to Denver to meet up with Laura at the Denver Museum of Nature and Science for the pirate exhibition. Something I did not mention is what happened on our way down to Denver/Dr's appointment. We ended up hitting a pothole or a very large chunk of cement. Ended up with one flat tire, one tire that wasn't flat but was bubbled and had to be replaced, new axel, a new rod and new bearings. We went to the doctors and got the great news. We  went to the cheesecake factory for dinner and then went back home.

Thursday we relaxed for the majority of the day. Mom, Austin and I met up with Lindsey to get our nails done. That evening the 4 of us went to the Midtown Arts Center to watch 42nd street, I love musicals! It was a lot of fun. We had wonderful seats too. Lindsey and I ended up purchasing season tickets. The ones we are most excited about hour hair spray and the sound of music!!

Friday Austin had to leave :( but it was so great seeing him!

Later on that afternoon my friend Kalla Paige came to visit and we ate at Cafe Vino and went to see the movie Water for Elephants which I highly recommend. I experienced such a wide array of emotions during that movie. Go check it out!

Wonderful blessings!

I have spectacular news!!! 


I very reluctantly went to get an MRI on Monday night starting at 9 PM! Not excited at all especially since it takes about 2-3 hours and then we (Austin and I... Austin came to visit more about that on another post) it's another hour home. I'm used to going to bed around 10. When we got there I found out they had given me the fast machine which meant half the time!!!! I was ecstatic! My MRI tech was the best one I have had so far. I now want to do all my MRI's in the evening so that I can first of all get the fast machine and second of all have Corey as my tech!


Wednesday I went back to the doctor for a check up along with finding out the results of the MRI There were a lot of people there: Austin, Jana, Laura, Mom, myself (obviously) and the Dr. Dameck (also obviously). It is rather interesting having so many people there. They all have their own questions. I came prepared with a list of the things I was experiencing. After that I did the typical evaluation that she has me do. I always forget about having to say the months of the year backward but I can still do it! My balance was much better this time. Then all we had left to do was find out the results of the MRI! I was certain it had to be at least a decently good report since I haven't been having migraines and I've been able to get out and about but I had no clue how great the report was going to be. 


Dr. Dameck pulled up the scans from February when they found that things were not getting better but actually getting worse and then she brought up the ones from Monday night after. Since the scan in February I have gone through 15 days of radiation (a total of 37 grey for those of you who care/understand, aka Smccauley). I did a round of lomustine and started tarceva daily both of these are chemotherapies along with the avastin because they have to wean me off of it. 


We got to see a side by side comparison and the difference was incredibly drastic! For the first time I was able to say well that is abnormal and that is not etc... My brain looked so pretty I was doing my best to hold back tears! I was so happy and felt so blessed that God is providing His healing! So in the scans white (enhancing) is bad and means "cancerous tissues" grey means "non-cancerous tissue". For the scan on Monday the white that had been in my brain squiggles were gone! There had been a couple of white masses growing in February that have now become dark "ghosts" meaning you can still see their outline but they are not enhancing!!! Dr. Dameck said that things are disappearing in regions that were not radiated! How incredibly awesome is our God!


Psalms 107:1


Trading My Sorrows
Darrell Evans 
http://www.youtube.com/watch?v=mXi5iq1zAl4

I'm trading my sorrow
I'm trading my shame
I'm laying it down for the joy of the Lord

I'm trading my sickness
I'm trading my pain
I'm laying it down for the joy of the Lord

Chorus:
And we say yes Lord yes Lord yes yes Lord
Yes Lord yes Lord yes yes Lord
Yes Lord yes Lord yes yes Lord Amen

I'm pressed but not crushed persecuted not abandoned
Struck down but not destroyed
I'm blessed beyond the curse for his promise will endure

And his joy's gonna be my strength
Though the sorrow may last for the night
His joy comes with the morning

Happy celebration of our risen Lord

April's Dr's appointment

Jana my mom and I went to see Dr. Dameck on Wednesday, Laura met us there, eventually. She had to park so extremely far away, the hospital was packed.  We got there super early and did a lot of waiting around. I had several issues to tell Dr. Dameck about.
Here is a quick list:

• Conjunctivitis and scratched/irritated eyes
• Drippy nose and dry nose
• Balance issues
• Mild headaches
• Swelling/puffiness

My evaluation went good except for my balance. I was for the first time unable to keep myself stable when just standing on one foot. 

So I've gained weight and I don't like it one bit at all! It is mostly due to the steroids and their side effects along with the fact that I haven't really been able to exercise, going up a flight of stairs can tire me out. I don't have much energy. Well I mentioned the fact that it was probably mostly water weight and once I was off the steroids a lot of it would go away and then my doctor chimed in and said actually it's hydrated fat (pretty sure that is what was said but the main thing was that it was FAT) Being the avid execiser I used to be I know that in order to get rid of fat you have to do cardio, something that I can barely do any of currently. I started bawling... followed by laughter in the midst of sobs. I said:

 "I cry when they tell me it's fat, I cry when they tell me I'm going to lose my hair, but when they tell me I have brain cancer... eh that's cool I can deal with that."

I felt so silly. My platelet counts are down so my immune system is down and my bilruby  (something having to do with my liver) counts are high.

I had an infusion of Avastin and it took a long time for them to get me stuck. My normal infusionista was even having a difficult time. She tried twice and couldn't get it and then one girl tried my hand and then the woman who was the best at hand sticks finally got me. I got stuck a total of five times :/

We did have some fun though and we all chatted with the nurses, we are friends! They are so fun and upbeat and we always seem to chat it up when we run across each other even when I'm not in the office or the infusion center.

So what's next:

• Tarceva nightly
• MRI in 2 weeks
• Lomustine in 2 weeks
• Avastin in 4 weeks
• Steroids, slowly work myself down from them 0.25 mg every couple of weeks

First Night of Tarceva

Last night was my first night of taking Tarceva, I was in bed reading the insert they provided for me with the medication that gave me all the side effects and warnings etc. I got nervous/fearful because I was afraid of what was going to happen to me with this new drug. I also was being attacked with thoughts of what would happen if this drug doesn't. My hands were shaking and I started crying. I was trying my hardest to pray but I couldn't focus. 


Suddenly I had this stabbing pain in my eye and I jumped out of bed, went into my bathroom mirror and there was an eyelash that was poking me in the eye. But in those very few seconds I had stopped crying and worrying about my chemo pills. After that I was able to go back to bed and focus on my personal time with God. 


Thank you Lord for taking eyelash number 27.
Matt. 10:29-31

No more radiation

Wednesday was my last day of radiation. It was a bittersweet experience. I cried when I left. The people there are so friendly and encouraging. They always have smiles on their faces and open arms. I don't know if it is for everyone or for a select few. I have been with them for an overall total of 3 months and 3 weeks. I've gotten to know them and they are my friends!! I try to stop by and visit them whenever I have an appointment with my other doctors and I will continue doing that but it is always hit and miss who I get to see.


I brought them cookies and gave them a card:


And wrote on it with all the radiation you all have given me I might end up growing more arms and legs. We joke around!


I also met a couple of really wonderful ladies Beverly, Jackie and Kathryn who all have wonderfully beautiful spirits. I am sad I am not going to have the opportunity to see them everyday and talk with them but I will always remember them in my prayers along with so many others! I cried when I left... I'm such a sap :( but I will continue visiting them every time I go visit my other doctors!

DC

I was given permission from my doctors to make the trip out to DC for the National Science Foundation conference. I went last year and present my research and co-lead a discussion on incorporating research into the K-12 education system. I had submitted abstracts again for this year but ended up being VERY thankful that they were not accepted.


Cherelle and I went down to Boulder to stay with her parents on Thursday night because our flight left at 6:00 in the morning. That evening we had dinner at her ?college ministers? house and my cousin Elliot was able to make it over after his training. It was absolutely great having the opportunity to chat with him! He lives an hour away and I probably have only seen him once a semester and he is graduating this semester! Totally going down for his graduation!


Friday morning Cherelle and I left for the airport and were shocked to see that everyone was already there. Cherelle had been amazing and had worked with the airline for me to have a wheelchair... which meant we got to bypass the security line and we got to pre-board :) We made it to Baltimore and then had to do lots of walking and bus/train riding to make it to DC and then much more walking to make it to the conference.


Saturday morning I woke up with a massive migraine and could not force myself to get up and moving. I felt so horrible, I wanted to be at the conference but physically couldn't do it... I had worked myself too hard the day before. Finally around 2:30 I was feeling much better and was all ready to go to the conference. I was on my way out the door when Cherelle and Kate showed up and said let's go sight-see. I had missed the conference for that day :( Turns out our team had done really well, we got awarded for our progress report and Kate was given an award for preparing the best GK-12 website! She is so talented and you should hire her for all your website designs (shameless promotion). I was also very sad that the keynote speaker discussed geckos feet and how we can use their feet "technology" in the scientific community, a lesson which I had come up previously for my high school students. So of course we ended up going sight seeing, this time taking cabs everywhere!


Then we went to the museum of nature and science we were all on the same page with what we wanted to see in the short time we had... the rocks and the dinosaurs! The three of us were inspired by the gems and all the different forms and colorations they could take on that we started discussing a lesson for our students! That night we all met up together and ate at a very yummy ?chineese? food restaurant. I even tried jelly fish, not too bad actually. We had so much food and variety to choose from!


The next day I was feeling well and was up and ready for the conference! I went over to have the continental breakfast and the group was told by our boss to go out and sightsee, so we did! Cherelle, Kate and I went to the Lincoln memorial and got our pictures with Honest Abe. We had someone take a picture of the three of us in front of him.... they cut of his head.... really?!?!?!  We took Kate back to the hotel so that they could catch their flight. Cherelle and I went back out to have dinner on the Potomac river I believe it was. it was an absolutely gorgeous day. We stopped by the White House and took a couple of pictures, there were snipers standing on the roof, the president very well could have been there that day. We then went to the museum of American history and looked around there for awhile. That night for dinner we sought out a restaurant where I could get a lobster roll, and MMMMMM it was delicious!


Cherelle and myself had stayed an extra day so that we could do some more sight seeing, well once again I couldn't make myself get out of bed. So Cherelle went out exploring without me :( She got to see the supreme court and she went to the postal museum and got to go shopping and found some pretty cool stuff... I was so jealous.... but I have to look out for my health first and I needed to stay in and rest.


We left that afternoon and we made it back safely and had radiation the next day. I am so thankful for Cherelle and Kate and their knowledge of traveling and sense of direction. Couldn't have done it myself! They are great travel buddies! 

I can’t believe I forgot to put this in

Monday evening the elders met with me and my mom to have a prayer session. I updated all of them on the results of the MRI and what the plan was for treatment. They were so encouraging and I felt the Spirit of God in the room with us.

There have been other times when I have met with the elders and we would pray but this time it was different. The other times I was a lot more emotional, sad and scared for what the future held. This time I was more at peace of course I’m sill emotional and slightly scared but I feel much more at peace. I know that God is holding my future in His hands and He has amazing plans for me!! I know that He is daily working in my life refining me making me into His beautiful creation.

Do I want to have this disease, no. Am I thankful that I have this disease, yes. I know that might be hard for people to comprehend and even hard for them to understand. In my opinion one can not go through something like this and not come out of it changed, changed for the bad or changed for the good. I feel like this experience and struggle has changed me for the better.

1)   My relationship with God has gotten so much stronger. I thought God and I were pretty tight when I was in college, boy was I wrong! I am so thankful that He keeps teaching me and showing me new things through everything I’ve experienced and been through in the last few years.

2)   This has brought my family closer together. We still have our struggles and times when we don’t get along and we still have problems communicating. But we love each other deeply and are working towards learning to understand each other better.

3)   I realize more how important relationships are. I know I have been very bad at calling/texting/emailing back but to my friends I love you all so very much and miss all of the time we used to spend together. But please know that you all are always in my heart and I cherish all of our memories together!

4)   I’m learning more of what is important in my life, I can’t speak for anyone else’s life. I’m figuring out what kind of impression I want to make on people, even if I only have a few seconds with them.

5)   I have realized the hope that people have for themselves and for anyone who is going through these kinds of difficult times. Over the past 3 years of treatment I have not once experienced someone who didn’t have hope, regardless of what their doctor had told them. I have been spiritually encouraged by several of the other patients and caregivers. So many of them believe in a higher power and are not afraid to express it. 

Jer 17:7 "But blessed is the man who trusts in the Lord, whose confidence is in Him" 

Family and Treatments

I'm not sure what all I have mentioned so far but the results of my MRI were not that great. For the first time I could actually tell that something wasn't right and could tell what was suppose to be there and what wasn't. I was very scared but I understood why I was having as many problems as I was. Being very lethargic and having lots of migraines. Things were randomly coming back in my brain and some in my cervical spinal cord and possibly in other areas of my spinal cord : /  My doctor was trying not to cry, I could definitely see the tears welling up. She told me that this was beyond her expertiece and wanted to get in touch with the experts in the field to find out their suggestions. 


After finding out this very sad news regarding the MRI results I decided I wanted my family to come out to be there when my doctors discussed my options. I had always gone out to visit them when I get this kind of news but based on the reaction from my doctor I felt it was time for them to come out to me and be there to hear what the doctor said.


My family (Mom, Dad, Rachel, Michael, my nephews and Stephanie) drove out on Wednesday and stayed in Denver that evening. I met them in Denver Thursday with Jana. Surprisingly we all stayed fairly calm throughout the discussion, which lasted over an hour I'm sure maybe even close to two hours. There were lots of things we discussed about possible treatments, even alternative treatments. I've (along with my family) have decided that I would stay out in Colorado to continue treatment. My mom has also decided to stay out here with me for awhile, not sure how long but at least for awhile.


After the doctors appointment we went out to the Old Spaghetti Factory with Wanda and Stacey Smith and their boys. Wanda had taken care of my nephews while we were talking with Dr. Dameck. They went over to the children's hospital and played over there. It was such a beautiful day. The OSF was so much fun I love the fact that they have balloon makers around. All the boys were so excited! Colton had a sword made and then when Triston had his turn he said that he wanted a sword that was bigger than Colton's, it was so funny, and he got just that!


For the weekend we stayed at the house that is owned by the church where my sister attends (Tri-Lakes). It didn't have as many rooms as I thought it did but it worked out well, 3 rooms and  6 beds for a total of 7 adults and 3 kids. All the boys in one room and the girls separated into the other two. It was nice that we could all be together for the weekend even though it did get kinda stressful on occassion. It was also very nice because various members of the church had prepared food for us along with stocking the refrigerator. There was LOTS of desserts too!


Saturday was a little more stressful, partially because there was going to be a fondue party at the house that evening for the people from the church along with us wanting to do. I wasn't feeling that great that day but I went ahead and went to garden of the gods with everyone and just chilled in the car while everyone else ran around. They all seemed amazed at how beautiful it was especially Michael, Rachel and the boys. I'm pretty sure everyone else had already seen the area at some point. I think Michael might have been the most impressed. Of course we had to make a stop at the gift shop. I didn't do much shopping but Rachel and Stephanie got some really beautiful stuff and of course my nephews picked out some really fun things!


We had some troubles when we got back to the house and ended up having a family discussion in the basement while people were arriving for the fondue party that night. It's just so hard bringing together so many people with all their expectations, opinions and agendas. Yes everyone came because I asked them to, but at the same time it was like a family vacation and then you have other people who have this as their life and still have responsibilities. It was tough but we made it through and I hope everyone is understanding each other better.


At some point we went to Five Guys Burgers and Fries, mmmm yummy! Just some advice we got two large things of fries for all of us and there was still some left over. Be cheap and share!


Monday mom and I went to meet with the radiologist. It was very interesting because I thought I had gotten the most radiation that I could but I guess I was wrong because they can and are giving me more. So I will be doing 15 treatments of brain radiation and radiation to a very small portion of my cervical spine. The circumstances aren't good but it was so great to see the radiation technologists again! They are such amazing people and such a joy to talk to! Dr. Chen said that I could still go to Washington DC. I'm hoping and praying that I am feeling even better by then!


Tuesday I had radiation and chemotherapy. The chemotherapy that I'm going to be taking are all pills. They had the lomustine for me but not the other one yet. My current insurance doesn't have enough prescription coverage so my doctor is getting in contact with the company that supplies it to get it for a reduced price. When I was on temodar I was able to get that for free which was such a blessing! Mom and I ended up staying at the infusion center and resting. My head was fuzzy and I wanted to rest so even though I just took pills and didn't do an infusion they let me stay there and rest in their reclining chairs and I watched ice age 3, it was so cute! 


This week I've felt fairly decent. I want to say the radiation is already working. I haven't had really intense migraines or headaches. Although it's not that different from last time it seems much faster! We drive down, takes about an hour, and then within just a few minutes I go back to my machine they put my mask on me and then the radiation takes no more than a minute (maybe two (absolutely tops)) and then I'm done and we drive back! And then no worrying about rush hour traffic! :D


Mom and I worked on cleaning my room and the living space next to my room to get prepared for the bed that was being brought in for her. It feels so nice to have a clean room! Mom has been great with cooking and cleaning and helping out around the house. I'm so thankful for everything she is helping me with.


This morning I woke up with a migraine : ( I stayed in bed for a few extra hours and finally got out of bed around 10 but I'm feeling a ton better now!


Proverbs 3:5
Trust in the Lord with all thine heart; and lean not unto thine own understanding.


Psalms 121:1-2
I will lift up mine eyes unto the hills, from where cometh my help. My help cometh from the Lord, which made heaven and earth.

More Radiation and Chemotherapy

I will write more hopefully tomorrow sometime, but for now the plan is:

brain radiation 15 days
CCNU (lomustine) every 6 weeks (pills)
EGFR inhibitor (tarceva) every day indefinitely (pills)

Started radiation yesterday along with the CCNU

My mom is here with me for the time being a great help and support!

I'm doing okay headaches and very very low on energy  : /

LOVED seeing my family this past weekend!

God Works In Amazing Ways

I am getting a VERY late start to work this morning which is the first thing. Getting a late start because there have been several times I've almost been in tears about what is happening in my life and the unknown. Second of all I do a pretty good job of turning things off when I am done with them such as the TV. Third my preferred TV news channel is 9 as opposed to 7. Fourth I for some reason decided to get dressed upstairs instead of downstairs in my bedroom. Fifth just absolutely perfect timing.

The TV was on to channel 7 news and as soon as I got upstairs to get ready I heard new brain cancer vaccine. This news coming after my new diagnosis. Could be something they end up using, at least something for me to consider doing and look into more.

Here is the link:

http://www.thedenverchannel.com/health/26919632/detail.html

Going to be even later to school... might as well eat at home.

Isaiah 55:8-9 The Message

I don't think the way you think.
The way you work isn't the way I work."
God's Decree.
"For as the sky soars high above earth,
so the way I work surpasses the way you work,
and the way I think is beyond the way you think.

Good News and Not So Good News...

I Should Have Posted This Part A Couple Weeks Ago

I was suppose to have an MRI on the 1st of February but somehow they never set it up and we tried to make it work out but we weren't able to and just decided to do it in another couple of weeks. I was so stressed out about it because of the timing of everything aka orals. As much as I love Dr. Dameck's scheduler (who just happens to be very new to this position) she just isn't quite familiar enough with the system and getting everything set up. She worked so hard to try to get something to work.

Turned out being a blessing in disguise because that morning I woke up with a migraine and throwing up. I almost didn't go down. I called Susanne and the scheduler but no one was there and I needed to know if we could reschedule for sometime soon within the next few days. It was getting to the critical point of needing to decide if I was going or not and so I called again, got Michael and said I need your advice and he suggested coming on down. I got myself ready and made it to Denver (because I had Jana). They wheeled me around in a wheel chair and I was crying because my migraines were so intense. Had the appointment with the doctor which wasn't much of an appointment and she didn't go through the typical procedure plus we had the lights off. For the infusion they gave me my own room with a bed and mood lighting. The infusion took a long time because first they pumped me with steroids, then anti-nauseas, then saline, followed by the avastin and finishing up with saline. I was there for several hours, it was a long day.

Good News

I passed my orals and it feels amazing! It wasn't as bad as I thought it would be. I had a little bit of a break down about 10 minutes before I was going to have to present but thankfully my roommate Cherelle was purposefully walking by my presentation room and she said a prayer for me and gave me lots of encouragement. She is amazing and I am thankful for both her and my other roommate Kelley! My committee is so great! They worked with me and did their best to lead me when I wasn't quite understanding what they were asking. I don't quite remember the question they were trying to help me through but to help me along they asked me what is behind a plug in... my answer... the wall... we all laughed. Answers questions was interesting and they kept telling me I was making it more difficult than I needed to. One thing I had to do was just draw an arrow going in the opposite direction too (show that the reaction is reversible).

I took the next several days off to rejuvenate. And Laura came up to visit and chilled with me. We didn't do anything too exciting. Her first night here she hurt her ankle and was pretty much out for the rest of the weekend. And then I was pretty exhausted and rested a lot! We made my favorite cookies! My friend Austin he got me a day at the spa on Saturday, he takes such good care of me/pampers me! I enjoyed a foot massage, a full body massage and a facial along with a very nice lunch from Austin's :) what a coincidence! Sunday I woke up and then went upstairs and then ended up falling asleep on the couch and missed church. I got myself ready and had went over to have lunch with the Frei's and Laura and my cousin Elliot who came up to visit. We played the game Quelf! It was so much fun and I recommend it to everyone it is so random and fun!

Just Some Random Things in Between

I have been struggling with having headaches and migraines at times. I've also noticed that my vision and balance has been off a little bit here and there. All of which I have been attributing to the steroids. I had talked to my boss about how I'd been feeling and he offered to have them move my orals but I was just so ready to get them done with. My antibiotic I was taking for my thrush was yucky and made me sick to my stomach but it worked! I've also been having trouble sleeping because I have been waking up with intense headaches to migraines even that take a couple hours to finally go away which keeps me from work until 11 most days, even through I've been awake since 7 or 8 that moning. I've been trying to eat more healthily after Christmas and trying to be wise about what I eat, being on steroids makes you VERY hungry and retain water and salt. I went down a couple of pounds. I really need to try to get out more to exercise but my energy has been so lackluster. It's been beautiful outside but I feel like I need someone out there with me encouraging me to keep going I need exercise partners willing to just do little things here and there like a walk or doing yoga at my house. So if you're interested call me and you have time call me!

Not So Good News

I had a doctors appointment and MRI this week. It was definitely a blessing in disguise that I didn't have it the week before my orals or else I wouldn't have done them. I had a little bit of a surprise when I got there, they were going to do a full brain and spinal cord scan as opposed to the brain and lumbar spine as was originally set up. The scan was hard it took a little over 2 hours.... staying still that long takes a toll on your body, I was so stiff! As soon as the tech said we were all done I started moving around and stretching!

The mood at this doctors appointment was much lighter than it was the last time. I felt a lot better and got to "joke" around with my doctor like I typically do. I know it seems strange but I have a good time visiting my doctor, she's very sweet and she's like a friend. And we talk about her family (mine too) and how they all are doing and vacations and everything. One time I pretended like I was going to punch the resident that was checking up on me because he told me to put my dukes up. What else was I suppose to do?! I told her about some of the things I'd been experiencing even being slightly off balanced on occasion along with the headaches and slight nausea.

At the end of the check up she brought up the MRI scans that had been taken earlier that morning and I could tell she was not happy with the results. Immediately started praying and telling myself it's going to be okay. After letting Dr. Dameck go through the scans for a little while Laura, Jana and I moved over so that we could take a look at the scans. Dr. Dameck had tears welling in her eyes. She showed me the scans and there were some differences since the last scan at the end of October. There were some changes in my spinal cord lumbar and thoracic but not substantial. In my cervical spine there appeared to be a small growth that once again wasn't present in October and my brain looked not so good. There appeared to be a lot more enhancement in several different areas that had not been there previously. We all were trying to hold it together. But for once I could actually tell the difference between the scans (comparing Octobers with Februarys) I could tell what was suppose to be lighting up and what wasn't. I was scared.

Of course the next question is what is the next step and Dr. Dameck said that we are in a tough spot and she doesn't know what would be best at this point. Turns out what I have is very rare it's an astrocytoma with leptomeningeal spread. The difficulty about it is that it is not well defined, can't be targeted with surgery. She is going to get in contact with other neuro-oncologists to just discuss what my options are what they have used with their patients what has worked and what hasn't, multiple heads are better than one! So we've scheduled another appointment for Thursday.

Prayers for my doctor and the doctors she will be talking with would be greatly appreciated. I know this is tough for her too (she was fighting off tears). Also prayers for me and my family as we meet with the doctor next week to discuss the options. And yes somehow my family mom, dad, sisters are going to be making their way out here so that we can make this decision together.

The infusion went well this week. Everyone was so nice, they once again gave me a room so that it was a little bit more private for us.

Laura, Jana and I went out to dinner and on the way there I started crying because I was sad that I might be leaving my family and friends and how sad they might be. Well that night before bed I was going through my iphone application and a verse that came up was 1 John 2:15 Love not the world neither the things that are in the world. If any man love the world, the love of the Father is not in Him. I love my family and my friends and I don't want to leave them but I pray that no matter what happens that we will all some day be in Heaven with Him when He calls us home.

What To Do Now

If I haven't gotten back to you through facebook or text I'm sorry. I've got a lot going on and trying to figure out my family coming out but I am so thankful for all your prayers and encouragement they mean so so so much to me and help me keep my focus on God. Also thanks to all those that congratulated me on passing my orals, it's so nice not having to worry about that anymore. I will slowly be getting back to each of you but it will take awhile I'm sure. I could definitely use prayers for peace and for guidance on what to do next, same for the rest of my family who will be traveling this next week.

Laura is here with me know. We haven't really done much. Today she's been responding to peoples posts and I've been trying to figure things out for the family coming out and trying to update this and several other things I needed to get done for work. But I'm tired and need to rest for awhile. I know there is still plenty I have left out but this is long enough already and I as always will try to do better at posting.