We left last Tuesday afternoon for a family camping trip. We thought we would go from Tuesday to Friday and come home for an appointment that afternoon. We decided when we were there that we were having so much fun that we stayed until Sunday instead! It was relaxing, we slept well (except for one night) and we had a great time with each other! It felt like a 'normal' thing we would do each summer - I needed some of that as most of my last two months has NOT been normal! I have been weened off one of the two medications I have been on since May 10th. I am starting to feel less dizzy and much more human again! (This medication was the one for the brain swelling; I will be on the anti-seizure meds for several months still.)
When we woke up on Tuesday, we weren't sure we would be going. I've been swelling up a little on my face over the days but that day when I woke up, my face was very swollen as well as my back of my neck. Kurt told me either I called my doctor's office or he was taking me to the emergency room. So, I did call my doctor's office and they eventually called back to let me know this is very normal after surgery and it was fine as long as I wasn't running a fever (which I wasn't). So, we got ready and just as we were getting ready to leave, a package came with a hat that I ordered. I have been wearing scarves on my head (and while they are not really me, I've gotten kind of used to them but looked forward to wearing a hat). I was excited to find that the hat that I bought had terry cloth around the band of the hat on the inside and was very comfortable. So, I wore that all week! My aunt also brought me a "Fight Like a Girl" pink hat which fit nicely and I wore on Saturday. And, sortof a funny story to me ... while I was coming out of the bathroom at the campsite, I said hi to two boys who were walking by. Most kids won't say hi back to me (which I knew but I still said hi to them) and as we walked a little further, I heard the one boy say to the other, "I thought that lady was a guy!" Of course, Ashley was with me and you could tell that bothered her more than me. Both of my kids have a hard time when people stare... I expect it but I don't think they understand why people react that way.
On Friday I went to the radiation oncology office to get my hip mapped for radiation. It took approximately 15 minutes and they basically just mark your skin where they will put the machine for radiation. I also got three dots of tattoos on my hips. Kurt was proud that I finally got some "ink" but they look like a freckle!
Later Friday night we went to the Relay for Life at Al Quaal in Ishpeming. I've gone for many years but have never stayed for as long as we did this year - we saw them light the luminaries; what an amazingly beautiful sight! This was also a bit overwhelming as I saw MANY bags decorated in my honor - thank you to everyone who decorated a bag for me!!!! It was a very nice time for me - the one thing that I find hard about having cancer is that you have cancer! I remember feeling that way the last time I had cancer. It's hard to explain but most of the time every day, I am now "Jodi with cancer" instead of just "Jodi". During the Relay for Life, there are so many people who understand and don't stare or look at you - I felt like I was just "Jodi". It was very nice to hang out there, chat with co-workers who came to walk, listen to stories from cancer survivors, and finally to talk to another person who also grew up in Gwinn that had cancer that spread to her brain. While our treatments and cancers are different, we plan to talk!
This next Monday - Friday is radiation week! We will be spending quite a bit of time at MGH this week. On Monday, I am having my brain radiation. We have to be there at 5:30 a.m. and they will put a halo on my head. I'm not really looking forward to this but know that it is necessary... and from the sounds of it, it won't be as bad as I am preparing for it to be. After they put the halo on, they will either do an MRI or a CAT scan. Then the neurosurgeon and the radiation oncologist will do the mapping for my radiation for the brain and I will be sent up to wait in the neuro floor of the hospital until they are done and ready for me to come down. The brain radiation will then be done and they will take the halo off and I can go home. They said to expect to stay until at least 5 p.m. or later so we will be there all day. Tuesday - Friday I will have @ 20 minutes of radiation treatments per day on my hip. Also, on Wednesday, we will be back there for many hours for the Mediport line to be put in (also something I am not particularly looking forward to but am sure it will be better in the end then continually being picked and IVs put in). After Friday, radiation treatments will be done. And, on the next Monday, I will go in for my first immunotherapy treatment.
I thank everyone for the thoughts, prayers, cards, emails - I do think that all of the prayers have been helping! And, I believe...
No comments:
Post a Comment