Some underused resources

I'm slowly gathering more opinions on whatever the hell is going on with my bones. On Thursday I dropped by the Managing Your Cancer Journey course at Princess Margaret Hospital. I've mentioned it before in this space: it's supposed to be a two-day course on consecutive Thursdays, but because it runs perpetually it almost feels like a sort of drop-in group; when I went to the two parts, there were people there who had been several times before. Yet you can hardly call it a group because barely anybody attends (apparently, said the social worker in charge, no participants had shown up at all the previous two Thursdays). Which is a shame, because it's an opportunity to have some time with Dr. Robert Buckman, the renowned oncologist/author/broadcaster/comedian/atheist. It amazes me that such a busy man takes time most weeks to spend an hour with the group. His c.v. makes you wonder if he's spread a little thin and perhaps more of a star than a doctor, but he sounds very knowledgeable to me, and he's enormously engaging and personable.

Anyway, because there was just one other person there last week, and she's a regular and a volunteer herself, I got to spend an hour discussing my case with Dr. Buckman, without any actual facts and figures in front of us, of course; he had to base his thoughts on what I told him. I learned that it's very common for cancer patients to be told that spots on their scans could be bone metastasis or could be something else, like arthritis. Based on what I told him, he said I probably have bone mets, but that it's true that I may never know. My CT report shows "lytic lesions," which are basically holes in the bone. Buckman says they're usually caused by cancer, though it's possible they're not.

What was confusing about my recent visit with my oncologist, the one I call Dr. Lee, was that the report from my CT scan referred to "worsening sclerosis" in my bone lesions. She fretted that I would be upset by this wording, and was frustrated by the radiologist's choice of language; she tried to explain that "worsening sclerosis" is not a bad thing. Sclerosis, she said, means the lytic lesions are filling in, probably due to the chemo and the Zometa (bone-strengthening injections I've been having). Dr. Buckman confirmed this interpretation, but also confirmed that if the bone is showing signs of being fixed, it means there was cancer there in the first place. And because I never had a bone biopsy, I have no baseline to compare to. Still, he didn't recommend a bone biopsy -- said it's often not conclusive (not to mention extremely painful).

Dr. Buckman was pleased to hear that I'm taking the Zometa, which he says not enough oncologists are using. While it has long been known to rebuild bone, he said it's only in the past five years or so that they've learned it can also attack cancer cells. He added that I'm in really good hands with Dr. Lee, despite her propensity for thinking out loud -- said she was smarter than him.

The best news was that he contradicted the 20% figure I found in an online medical article, and says that 50% of patients with what is referred to as "bone-only" metastasis survive longer than five to seven years.

He also told me that it's worth my taking a hormonal therapy such as Tamoxifen even if my estrogen-receptor sensitivity is as low as 10%.

And he liked my idea of having a radiologist sit down with me and Dr. Lee to explain my scans, which is going to happen on Oct. 2, although apparently the radiologist I connected with deals only with spines and not ribs! Anyway, it's a start.

At a certain point, I'll have to give up on getting an answer, but not before I've exhausted all avenues. Dr. Buckman suggests I not make any big moves like selling my house or quitting my job for another year. Meanwhile, my rib pain has increased, especially when I lie down, and I am swallowing too much codeine (which I like too much). It almost feels like a twisted bowel or something, and along with my swollen breasts and armpit (the scans showed a large seroma, a post-surgical collection of fluid that, according to what I've read, should have been absorbed into my body by now; it's been eight months since the operation) and the numbness and pinching makes me awfully uncomfortable.

Pollyanna moments:

• Yesterday my brother and his boys invited me to see It Might Get Loud, the film about guitars featuring The Edge, Jimmy Page and Jack White. It was a little long but great fun; Jimmy Page is now an unexpectedly healthy-looking old geezer, with a winning smile, and, as my brother pointed out, it was a hoot to see the worshipful looks on Edge and Jack White's faces as Page cranked out the riffs from "Whole Lotta Love." Sadly, the trailer gives him short shrift.
• On Friday morning, I got on my bicycle for the first time in over a year and drove down to my special spot on Ashbridges Bay. It didn't hurt too much more than it does when I walk, but for the first several minutes it felt weird and disorienting to be going faster than my legs could carry me. It may be my only bike ride of the year, and I'm so glad I went. Lake Ontario is normally quite calm, but on Friday there was enough wind to stir up some mighty surf, and sitting on the rocks getting spray spots on my sunglasses as the sun popped in and out of the clouds like a hyper mole was just heaven. Just me and the lake and some ducks. I don't know how I could ever not live in the east end. And if it weren't for Ashbridges Bay, I doubt I'd have stayed in Toronto this long.