I’m sorry I’ve gone “radio silent” for a while. I’ve been having a difficult time coping with pain, fatigue, nausea, and a complete loss of appetite that has resulted in frightening my family significantly due to my weight loss. Who knew that the elusive and yet highly coveted short cut to weight loss is just a little bit of radiation! I have been trying to do a bit more lately as well. I’ve started to work full time again. It’s an interesting thing because I have to stop every couple of hours to nap and recharge. I also started physical therapy today. My physical therapist seems very nice and he feels optimistic that we can make some good progress. Meanwhile my pain doctor is interested in trying botox to paralyze my jaw and neck muscles in the hopes that the very painful spasms in those areas will stop. Some of my docs are skeptical, but I guess at this point anything is worth a shot. He also ordered an MRI that I had done yesterday. We don’t expect to see anything significant with the tumor but I’m curious to find out what is happening with all the liquid that is in every space in my head. I have a theory that it is responsible for the pain that I feel anytime I’m in a slightly cold (what would seem comfortable to most) environment. I also saw a maxial facial surgeon yesterday. He wants to consult with my neurosurgeons and pain doctor to see if a surgery that would release a tendon in my jaw and saw down a bone is worth doing in order to get me to be able to move my temporal mandibular joint some more. Tomorrow I have to draw some blood to make sure my blood thinners are at the appropriate level and Friday it’s time for the experimental shot again. Never a dull moment!
I wrote the following section of a blog a couple of days ago but was unable to finish it. I have more to say on the subject and I promise to continue in another blog. For now I just really wanted to update everyone and put something up.
To describe myself as sensitive lately is an understatement. I’ve developed this new and highly embarrassing habit of crying at the drop of a hat. I cry when I’m happy, sad, nervous, frustrated, grateful, feeling loved, etc. What’s worse is that it seems as this is one more thing I have no control over. Luckily I have yet to full out lose it in a public arena. Usually only one or a handful of people at most are witness to my tears. I associate crying with “something’s wrong.” When I see someone crying, I want to console them. I also think of myself as having a public persona of someone that is “put together” and cool, calm, and collected. The inner me is not nearly as put together or as cool, calm, and collected as the outer me. As I tell my friends, who ask me how it is I always seem so confident, “You just fake it till you make it.” I’ve been successful because I trust my outer persona. I believe that she knows what I’m doing even when inside I’m scared and full of doubt. But how in the world do I cope when my outside persona has now become a ball of emotions that all culminate in the same external response – crying. I’m not sure of the answer yet because so far what I’ve been doing to cope is (you guessed it) cry!