Watch and wait

I have been accepted into the clinical trial and was chosen by the computer for watch and wait. So for now (hopefully never) no radiation. I will get my first MRI with the trial in a few weeks.

At first I didn't care which one was picked, I really liked that I did not have to decide. But as soon as I heard "observation" from the nurse I just melted into the couch. I hadn't been that relaxed in weeks. I started to have a much harder time with the steroids on Thursday than I thought might happen. And the idea that I may have to have radiation in a few days involving more steroids was making me a little nervous.

On Thursday I flew back to Dallas. I was a little nervous to be by myself that long, I guess because I have had someone with me for almost 4 weeks now. But I just tried to relax and read. Everything was fine on the flight. I was worried how my head would feel with the pressure. I had no pain. Definitely some weird pressure and gurgling still going up in there, but it was a very comfortable flight.

 About mid day before I left I noticed my swelling start to increase. Even though I'm tapering off the cumulative effects of being on dexamethasone for 4 weeks just caught up with me and it's like overnight the swelling was everywhere and worse. Extended steroid use also causes your body to start transferring fat pockets to weird places, like you torso. I was pretty uncomfortable, the worst being my abdomen because I felt like I wasn't able to take a deep breath and that just makes me feel anxious. I have a pretty small frame so I just felt like I had so much weight on me. I have also started to have muscle atrophy. I knew this could happen with long term use but I guess with me it's at 4 weeks. My legs felt so heavy Thursday and everyday since it just gets harder and harder to use my legs. I can still walk and do everything I need to do but it's definitely a noticeable difference, especially trying to get up or kneel. The increase in the taper caused horrible joint pain. I had no idea that this was something that happened and woke up Friday morning around 3am feeling like I had been hit in the knees with hammers. It's worse at night, I'm not sure what it is about 3-4am that it wants to kick in. But I can usually get it to ease up by getting up and walking around. I was so scared when it happened, I was thinking all kind of crazy reasons why I would be having joint pain. Fortunately I found a great on line forum of patients using dexamethasone. It had a lot of helpful information and a lot of people have this joint pain when they are tapering so that made me feel better.

I've been really surprised that I have been feeling worse 2 weeks after surgery than right after, it's normally the opposite for me.

Other than all the craziness from the steroids I have REALLY enjoyed being at home with Melvinn. We had a really nice weekend.

I will go back to Houston later this week for my Pet ct and then the next week meet with my oncologist. We still need to discuss if chemo is an option. Hopefully we will be discussing this over negative pet ct results!