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.