Project LEAD: first impressions

The first day of the Project LEAD workshop was as exhausting as I thought it might be. The workshop is put on by the National Breast Cancer Coalition, and it's an intensive weekend of education around the science of breast cancer, designed to create informed, articulate, prepared advocates. I've been impressed with the NBCC for a while now. Their model of educating advocates has gained the organization tremendous respect in the political and scientific communities, and NBCC advocates are often at the table to discuss research priorities and study design.

So today there were lectures on the basic science of cells and cancer, metastasis, and epidemiology. I knew much of the information, having given myself a crash course last year when I started diving into the studies following Sandy's diagnosis. But it was very helpful to have the information presented in a more organized, comprehensive, and accessible way. And there were study groups! With a smaller group of people, we discussed questions related to the lectures and the broader discussion. They were well-thought-out questions that required more than regurgitation and that stimulated great conversations.

So far, so good. But it was a very hard day. I don't spend more than a few hours at a time with other people right now, always happy to run back home and be alone (sometimes with Sandy's presence, sometimes just with the cats) and do my sobbing and decompressing away from other eyes. This was eight and a half hours of being constantly "on." Not that I was insincere, or that I didn't cry, or that this wasn't quite possibly the world's second most sympathetic group (the most sympathetic group would be a group that knew Sandy and knew firsthand what a loss her death has been). So there's a certain level of exhaustion in the day's setup, regardless.

But it was also hard because the facts are grim. Really grim. Cancer is unpredictable, and we know very little about how to stop it. There are so many natural defenses in our body that the odds of developing cancer from an initial basic-science viewpoint seem really slim. Yet it seems to be everywhere, and once it takes hold, it's a crafty sucker.

So much energy, time, and money have gone into telling women to get mammograms. But the data shows that early detection has no effect on mortality. The charts are striking. Since mammography became common, the detection of early-stage breast cancers has climbed. You'd think, then, that the mortality rate would go down. But it's flat. We simply don't know much. We do have data that shows that the five-year survival rate is dramatically higher for local or regional cancer than for distant (metastasized) cancer. So I thought that while super-early detection wasn't useful, the stage at detection matters. But we don't even know that that's true. It's very possible (and increasingly likely) that most of those early-stage cancers would never have metastasized. We don't know enough about what triggers metastasis to know! It's terribly frustrating.

I was a little afraid, going in, that I'd learn that there was something we could have done differently if only I'd known more. That if I'd attended this same workshop in January, when they held it in Tampa, we could have prevented the cancer from spreading to Sandy's central nervous system. I no longer fear that I'm going to find out I missed something. Instead, I fear I'm going to feel helpless and hopeless. I know that they've done a lot of these workshops, and they'll ensure that I'm left on a high-energy note, even if that energy is pure anger at the delay in real progress. So I probably will come away empowered when this is over. But at the moment, I feel like we were doomed all along.

One more thing I found interesting: Out of 45 participants, I'm the only who is a primary caregiver or spouse. I'm also the only one who was motivated by someone who recently died, though several people have lost mothers or sisters or friends years ago. But probably 25 of the participants are cancer survivors, several of them living with metastatic disease, and others dealing with multiple recurrences. The rest are largely community healthcare professionals.

I expected there to be more people who were there because they wanted someone else to live. I wonder if other cancer advocacy programs are so heavily tilted towards people who actually have the disease rather than those who love them, or if the preponderance of the participants having breast cancer has to do with most of them being het women with male spouses. There are no men in the group. I know it's empowering to advocate for yourself, but it also makes me angry that these women don't have someone else making this a priority with them - especially the women living with Stage IV. If I found today exhausting, how tired must they be? We read early on that a cancer patient needs an attitude and an advocate. Sandy and I agreed that she'd develop the attitude and I'd be the advocate. No one should have to do both.

And now, a cheery photo to make me feel better after all this glumness. This was Sandy modeling a sweatshirt Laura sent her last June.