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 NewsI 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.
