Ups and downs

Last week was a difficult one. I'm in a fair bit of pain; as usual, it changes all the time. The burning shoulder blade that was consistent for months but which was tolerable has given way to an ache in my ribs that makes it hard to concentrate on what's going on around me and only responds to Tylenol 3s. Meanwhile, I've stopped the Naproxen on the advice of Dr. Second, and the feeling that I've been bayoneted through my sternum and mid-back has returned. A few nights ago I couldn't sleep at all because of the pain, and the codeine did nothing to help; more nights like that would be hard to take. I made it through last night without any T3s, but I wake very early with the mid-back pain, which is only alleviated somewhat by getting out of bed and walking around.

On Friday, I went to see the spine radiologist at the hospital to get a full explanation of my CT scan. I laid out my history, and he said, "Do you have a medical background?"

"No," I replied, "I'm simply a long-term breast cancer patient." Later, when I clearly couldn't understand what he was doing his best to explain, I told him that I was not as smart as he seemed to think I was. He showed me the same thing Dr. Second explained earlier in the week; in January my spine looked grey on the film; now it's mostly white, not uniformly (which might indicate an osteoporotic spine being strengthened) but in splotchy bits. He kept talking about "bone change" and "bone reaction" being very clear, but it's still not clear to me whether the reaction, which is bone-building, means holes that were caused by the cancer are responding to treatment, or whether the bone-building represents new tumours. Has the last nine months meant improvement or worsening of the bone mets? I'm still not sure. Dr. Lee seems to think it's improvement. I got the feeling the radiologist is not so sure.

In any case, he is pretty convinced there's cancer throughout my spine, and after Dr. Lee arrived she went so far as to say she was 80 percent sure he was right, and ordered a bone biopsy. Both of them concurred that there is not much point in my having my spine surgically corrected if the pain is coming from the cancer (but how do they know the pain doesn't have multiple sources?) and that I should now be having radiation treatment to the bones. What pisses me off is the fact that the radiologist referred to my grey spine in the January picture as osteoporotic. When I began taking arimidex, the cancer drug that can weaken bones, in 2006, Dr. Lee ordered a bone density test. The test result said the same thing it's always said: very good result, but of course they only measured my hips; the spine was not measured because of the presence of metal rods. Another bone density in July 2008 said the same thing. But it seems clear now that a CT scan would have showed them a couple of years ago that my spine was weakening. Why did they rely on the bone density test, which was clearly inadequate?

I think Dr. Lee was a little sheepish that I did an end-run around her and went straight to the radiologist, who doesn't usually see patients, because I didn't find her explanation adequate, and also because she's been treating this cancer rather optimistically for the past eight months. And I'm sure she also thinks I've upset myself needlessly by asking to see the films.

She may be right. On Saturday morning I took the bus to Kitchener and wept the whole way. I just couldn't stop it. I don't do that very often, and my mom cheered me up when I got there. But I think I am in a difficult stage. I feel enormously better when I take the codeine pills, but it means my day is very up and down, both physically and emotionally. And my digestive tract is pretty gummed up!

I am not looking forward to the bone biopsy, nor to more weeks of radiation treatment.

Pollyanna moments:
Big hugs from my sister, chats with her lovely kids, whupping her partner at Scrabble, holding hands with my dad, laughing with my mom.