No Sleep! That’s right….I think I got about 4 hours of sleep last night! Went to bed around 11 p.m., back up at 2:30 a.m. and then back to sleep for an hour or so at 7:30 a.m. So what does someone do for 5 hours in the middle of the night? Hmmm, online window shop, visit too many cancer message boards, research medical information that makes no sense and stare blankly at the screen wondering when the pain will subside.
I am scheduled to have pain medication every two hours, but it wasn’t good enough. The times that I was able to fall asleep it was with the help of my new trusty (or untrusty) friends Valium and Benedryl. Finally I had enough when the sun was up and Christine and I decided to move on with the day and start with some Starbucks. Yummy! This is the first time that I have really had a cup of joe since I have been diagnosed. I think I drank 1/2 and started feeling the caffeine buzz and decided to stop so I wouldn’t start craving other things that I shouldn’t be having.
The day cruised by with time blocked out by bathroom jaunts, taking on and off the back brace, and checking the constant vibration of my Blackberry. I felt in horrible pain the entire day. Both surgeons that I worked with stopped by the room today to follow up and see how things were progressing. The x-rays I had taken the past few days looked immaculate, no complications there. The neurosurgeon was also pleased at the results and how I had not had any motor function complication. So, at this point we were just waiting on an attending doctor or oncologist to see me for the day and help to do something about the pain!
We (Christine and I) waited and waited until about 4:30 when we were finally told that I would not have an attending doc yet and it would just be referred back to my oncologist…this went back and forth all day by the way making it seem as though no one wanted to dare take my case! I was told that I would just have to wait until tomorrow when either the rounding docs came by or the oncologist to make any changes to the plan.
Here’s my concern-if they haven’t managed my pain by IV at this point, then how the heck are they going to send me home by Thursday with meds by mouth? I feel like I am having to deal with the same situation over and over again. Granted, I did just get out of surgery, so maybe I am a little antsy. However, I just feel like the next two weeks are the waiting game for radiation and then another two weeks of waiting before I start chemo. Meanwhile, who knows what’s going on inside my body with the cancer! This thing could be spreading to my brain or lymph nodes for all I know. If the average life span is 14 months or so, then I have already wasted 1/14 of it doing nothing, but dealing with all of these little side detours and not the real problem.
I swear, the only thing that keeps me sane is having my caregivers and friends around to keep me feeling normal, loved, and giving me a good laugh every now and again despite the circumstances. I just have to keep chucking away one hour at a time, day by day, week by week and see what may come.