I'm feeling much better today about the appointment with the oncologist. I was so shocked when I got the news that everything was ok - I just couldn't believe that everything could be fine AND that the pain would be so bad. I put a question to one of my newsgroups and it seems that pain is not always a reliable indicator of cancer progression. Femara also causes bone pain, so it's possible that the pain is from the Femara and it's working. I will still get an ultrasound of the liver to be sure that I'm ok.
I've asked for a referral to a pain management specialist at the cancer centre. The pain is not under control and there's no reason for it to be so bad. Clearly something needs to change because I shouldn't have to live in pain. My family doctor is the one who does my pain management right now. His approach, when my pain goes up, is to add more long-acting oxycontin (it's supposed to be taken every 12 hours) and/or take it more frequently. Right now I'm taking 120 mg of long-acting oxycontin every 4 times a day (every 4 hours, most days). This is a fine approach at lesser pain levels but at my current level doesn't seem right.
The specialists have other drugs and techniques in their arsenal that my doctor may not know about. For example, there's a drug that reduces the pain of the tendons rubbing against the bones. I don't know that this is happening to me, but this could be causing pain in my left femur. Taking that pain away would be great!
When I talked to the people at the hospital, they asked me a whole bunch of questions about my moods over the last little while - like whether I've been tired, fatigued, stressed, sleepy, happy, depressed, or whatever. I think this is because pain affects so many parts of a person's life that when it's bad it takes over in so many ways, and they wanted to know how much of my life was affected by pain. For the first time in a while, I'm cautiously optimistic that my pain might actually be reduced. I'm feeling really good about this.
Ian and I went for the first night of a Skills for Healing retreat. We'll be talking about stress reduction, meditation, mindfulness, nutrition, and negotiating the medical maze. I think it will be good for both of us. Between Ian's dad's cancer and my own, there's a lot of cancer to deal with right now. It's weighing pretty heavily on each of our shoulders (more so Ian's than mine, of course), and the more skills we have to help deal with that weight, the better. The retreat lasts all weekend, so I'm sure that we'll each get something good out of it. It's a free retreat which makes it even better :)