Thursday, December 10, 2009

Luke Day!!

Finally! Luke Day! I'm very excited!! I hope there are no flight delays or screw ups.

Radiation Treatment Status: 19 done. 11 to go!! I could feel quite a bit of "burn" on my back late last night but not bad really. You would think the burning sensation would be consistent but it's not. The feeling of burning comes and goes. I'm not often aware of it. That's good. Sylvia picked me up in this miserable cold for my early appointment ... she hadn't even had breakfast ... and then she brought me home and slathered me up with Aloe Vera gel (for cooling and healing) and Glaxal Base Lotion (for soothing, moisturizing, and healing). Thanks, Syl! Tomorrow my appointment is at 10:50. Maybe Luke can drive me if he's not comotose in his big, comfy bed.

I had planned on going back to bed after my radiation treatment but instead I thought I'd better get in queu with my oncological nurse about my joint issues. By the time I did that, had breakfast, finished up my iodine test stuff (a lot of details and rather complicated with all the Fed Ex stuff, too), and had return calls, it's already afternoon and I haven't slept. Oh well. That means a nap at some point, probably when I can't help myself later this afternoon. I still have pre-Luke things to do, too, and Kevin will be home from Regina for supper.

Today my fingers were so stiff and sore that it was hard for me to complete the medical test and Fed Ex forms. I haven't used a pen much, if at all, since my fingers started seizing up so I hadn't realized the impact until today. Bummer.

My oncological nurse called me back and then called again after she spoke with an oncologist. I'm to carry on as I have been and if things get worse, I'm to contact my family doctor. She said to call at the end of radiation and then they'll figure out what to do. She was about to hang up but I caught her just in time to ask if perhaps we shouldn't just set up an appointment now for me to see an oncologist since I WILL have to see one to determine what to take or not take for the next 5 years. This is when I learned that I have NOT been assigned to an oncologist yet since mine has left for Little Rock, Arkansas. She told me that I'm in a queue to be assigned to an oncologist and they expect to have someone new in place in January sometime. I told the nurse that this concerns me because I'll need to see someone right after radiation ends to figure out what to do next. She told me that she understands my concern but that there's just no available oncologist for me to see, which is why she suggests I just call at the end of my radiation treatments and see if I can get in to see someone then. Meanwhile, she agreed to see if she can move me up the queue list based on need. This is very unsettling and not at all what I was led to understand when I was first told that my oncologist would be leaving. I was told I would simply be assigned to another oncologist and while I understand that there are workloads, like me there must be others who drop off the list of regular patients and become only occasional or "as required" patients. Surely we fit in somewhere without too much trouble. Anyway, I find it alarming that I can request an appointment that I will absolutely need and not be able to get one nailed down for even a month from now with any oncologist. Here I am trying to be proactive and still ... roadblocks. When you're already dealing with enough crap, who needs this kind of stuff, too. This is the type of thing I shouldn't have to be worrying about.

I asked the nurse when I might expect to see some improvements in my joints and she replied, "it can really vary". I tried to pin her down to a more distinct range of possibilities ... based on her experience ... but she wouldn't say anything more. I asked her if this could be permanent and she said, "she doesn't think so". Not much information. I don't expect anything definitive, but just some sense of what other women have experienced would have been helpful. Back to doing my own research. I appreciate that my particular radiation therapists will, at least, give me some sense of what I MIGHT expect based on their experience. It's not anything certain they're telling me, but it really is comforting to have some idea of the possibilities.


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