June 6, 2010
Last Monday, Mike and I headed out yet again for Chicago. It seemed like we were home just long enough to cut our grass and do come laundry before we had to pack our suitcases again for another week. We planned on leaving around 3 pm on Memorial Day but I dragged my feet a bit, as I just get homesick and don't like to be gone, so we left closer to 4 pm. Aside from state troopers lining the highways, it was a good time to drive traffic wise. We hit tons of rain near Sandusky. There seemed to be one stretch of turnpike where there were more cars and motorcycles pulled off the road than were still driving. We called my parents at one point to make sure that there were no warnings for tornadoes or anything that we weren't sure about. Even with the rain, we made really great time and got to the Country Inn and Suites that would be our home for the next few nights around 10:30 pm.
Neither one of us slept very well that night, possibly because we had to be up and checked in at CTCA by 7 am. I was also put on a lose dose steroid when this lesion on the brain was discovered to control the minimal swelling around it, which I think is also the cause for lack of sleep for me. Anyhow, we arrived at the hospital and checked in down with the radiology department. I met with Tina again, the radiation oncologist nurse who is a fantastic girl by the way. It's amazing to me that there are so many good people all wrapped up in one hospital there. I was then taken to another nurse/ technician that would be the one to construct the mask I would have to wear during the radiation to keep my head immobilized. She ended up being my same age, which I actually think was a bit awkward for her as I am sure that it runs through people's minds how different paths our lives seems to be on. To be fitted for this mask contraption, I had to lie on a CT table with my head resting in heated silicone with saran wrap over it so my hair wouldn't stick. This would mold to the shape of the back of my head. From there, heated plastic strips were places over my face, one under my nose and into my mouth, one across my forehead, one molded around my nose and one across my cheeks. This had to cool to make a mask of my face. Then, another helmet like thing was placed over all of that and locked on. Talk about trying to not let your mind go claustrophobic. I had to stay completely still in that for about an hour and endure a CT scan in the process so that they would be able to line everything up on the scan with the helmet. When this was completed, I had to have another mask constructed. This one looked like mesh, but was still hot plastic that was stretched down tight over my face and locked down on the sides. This mold, once cooled, would be used in the MRI that I would have for additional planning. When this mask was completed, Mike and I had a few hours to spare so we went back to our hotel to try and take a nap, which we were able to do. We arrived back to the hospital around 12:30 for my 1:00 MRI.
The next day was Wednesday, and I had no appointments at the hospital all day. That was the preparation day for the radiation... the physicists and radiation oncologists would be the ones busy while I got to relax. The Jelly Belly Factory (Jellybeans) is really close to where we were staying and have said for years that one day we should take their free tour. This seemed like as good of a time as any, so we did it. It was actually funny. We rode the train with parents and their kids with our paper Jelly Belly hats on and toured the factory.
After that, we decided that since it was a nice day, we would try and find the Milwaukee Zoo. GPS comes in super handy! It was about an hour away and so we spent the afternoon walking around seeing all the different animals. I just kept thinking as I saw everything that if God cares so much about these animals, how much more did he care for me and what I was facing right now.
Thursday, we did not have to be at CTCA until about 12:45 for my procedure. We got there early for lunch and then headed downstairs to radiation. I met with Tina again and also Dr. Patel. He seemed excited to show me what they had planned out, saying that it was a really good plan. He showed Mike and I the combined MRI pictures and CT pictures that were used to formulate where the radiation would be administered. It would go in from 6 separate angles, all of which would be a different concentration of radiation. The strongest would be on the lesion itself, gradually getting less intense as it circles out. Upon closer review of the location of the lesion, it was not near any major sensors controlling speech or hearing as they originally thought it may be, so he suspected I may have a headache for 24 hours or so, but that may be the extent of my side effects.
After all of this, he told me that start to finish I would possible be on that table for a few hours. I would be awake for the whole thing, as you really don't feel radiation, it's mostly like an XRay. The hardest part for me, I knew, would be having to be locked down in that mask for that long. I prayed it would go quickly and that I would not allow my mind to take over. I just wanted God to visit me and stay there while I went through it, as I knew He would.
Two radiation nurses took me back to the room where I would have the procedure. I layed down on another CT type table, which I laughed when they called it a couch as it was definitely not a couch in any sense of the word! Before I knew it , my head was locked in place and I had to begin the process of lying uncomfortably still. I could see out just a tiny bit but it was much easier to keep my eyes closed. I could feel them trying to line everything up and then paging the doctor and physicists to come in and finish. I could hear voices by my ears as they lined everything up perfectly. Then I had another CT scan to make sure it they liked how it lined up on the images. When this was completed, after maybe 30-40 minutes, I was told the radiation would begin. They would rotate the machine to 6 different angles, which was a bit disorienting when you can't see. The bed would move and I could hear the machine, kind of a buzzing sound. I could actually feel it more than I thought I would on the left side of my head, but at that point I wasn't sure if it was more from the pressure of the tight mask on my face. I was beginning to get a headache as it felt like my head was in a vise. The bed continued to rotate, and I just kept praying for God to make it go quickly so I could get out of there! I was so relieved when they came in and said it was over and unlocked the mask from the table. Relief! No wonder they said I might have a headache!
My radiation oncologist was right there as my eyes readjusted to the lights of the room and said it went really well, much quicker than planned. I got right up and walked out into the waiting room to get Mike. It was a sort of surreal experience. He looked up, not having expected me to be done so soon, and maybe even not expecting that I would be the one to come get him when it was done! He commented that it seemed silly that we were worried over something so simple. I just kept thinking of the Emily story I shared in my last post. It's a spot on my brain, so of course we were worried! But God just kept telling us it was okay... just like Emily and her water on her dress!
I left with a headache just like they said, although I was pretty certain it was from the mask. We went back to the hotel for another nap before dinner. The next morning, Friday, we started home and made it back by 7 pm after a trip for some groceries.
For about the last 50 miles before we reached home, a rainbow appeared across the sky over the road in front of us. It stayed there for a long time. I look for rainbows a lot, because of the promise it signifies. We had the rain on the way out, but the rainbow sealed it for us on the way home that God will never flood us. His provision is perfect.
I am going to be starting an IV chemo again, I am just not sure when as of yet. They had talked about next week but then we realized I can't start it until I am off of this steroid which will not be until the 20th. I am gradually decreasing my dosage even now, so I will have to check to see when I need to schedule with my oncologist. I will have another MRI in 6 weeks to see if they can see any change yet in the lesion. It can take awhile for the body to rid itself of those dead cells, so 6 weeks is the soonest they will check anything.
I have so much more to write about my experiences with God this week. I feel like I have been to Heaven and back because of how near I have felt to God throughout this process. For now, I wanted to give an update and let everyone know I am doing wonderfully and I am not limited to anything as far as activities go. God's hand is on me and I appreciate your love and prayers so much.