Tuesday, April 21, 2009

The conference

I would have written much earlier about the trip and the conference, but I didn't get back until yesterday at noon and I was too tired to write anything to anyone!

I was flying from Philadelphia to Kitchener via Detroit with a 45min connection time and the Philly-Detroit flight was delayed. We left the gate, found a mechanical problem concerning the airflow and heating/cooling system in the passenger cabin, so went back to the gate for a fix. We were there for quite a while before we left the gate again and ended up in a 45min taxi queue. All in all, my flight was 2h late which meant that I landed in Detroit after my connection landed in Kitchener, so I spent the night in Detroit. It wasn't so bad; the airline put us up at a nearby hotel and there was a shuttle going right there. Plus they put me on a flight for the next morning and checked me in.

Aside from that travel adventure, all of the traveling was uneventful. I spent the entire conference weekend in the hotel although I was up late each night socializing. Friday night we ended up having a gathering in one of the meeting-ish areas of the hotel lobby. We ordered pizza and talked and chatted with each other; it was fun even if it was overwhelming. On Saturday, a bunch of people went into the city (we were in a suburb) for dinner but I was too tired to go. They didn't get back until 11:30pm that night, after which we hung out for about 2 hours.

One of the reasons that I so much wanted to go to the conference was to see the other women with mets. Talking to them online is one thing but meeting them in person is quite another. No one looks exactly like I imagined they would - even if they had pictures in their signature! Almost no one puts of pictures of their everyday selves there; they put up their best pictures :) Most people said that they thought I was taller. I think that means they thought I was of normal height :)

I also met some of other women from Calgary, which was fantastic. The care in the US can be very different from what we get in Canada that it's great to compare notes with other Canadian women. I'm very much hoping that we'll keep in touch.

There's something about meeting women from other places that have advanced breast cancer that's quite reassuring. Almost everyone has more cancer than I do, and they are all handling it. Even if they have to have awful treatments or they're on steroids to reduce inflammation for brain mets, they're still managing to have as good a life as possible. From that, I figure that when my cancer starts hanging out in other organs, I'll manage. Even if I have to have an awful treatment, I'll manage. I see other people doing it, so I know I'll be able to.

This isn't to say that everyone is good friends just because we all share the same disease. Having cancer doesn't make us all like each other or change who we are. We might be a bit more tolerant of each other (especially of anyone with brain mets on steroids), but we don't necessarily like each other. That's ok because it keeps the "hanging out" groups small. I spent most of my time with some number of a group of 10 or 12 of us. I liked that. I knew of another 10 or 15 people there, and while I saw them and could say hello, I didn't really spend much time with them. And that was ok, too, because no one was left alone.

So that was the social life (a huuuuge part of the conference), but I didn't just travel all that way to hang out with a bunch of people. I got a grant to go to the conference which means that I had to attend the actual conference :)

The main conference speeches talked about the new research areas which include targeted therapies like Herceptin and Avastin. These therapies (and the ones they're researching) target cancer cell-specific actions and block them off or change them in some way so that the cells die. Of course this means that they need to find out other cancer cell-specific actions. They're still working on that, but there does seem to be enough pathways known right now on which the drugs could work that would benefit many of us. One benefit of these therapies is that the side effects are almost non-existent since they have little to no effect on non-cancer cells. Pretty cool, huh? I definitely thought so.

I guess these types of therapies are monoclonal antibodies, which is a topic I remember reading about back in high school. They knew about them then but they didn't really know what to do with them or how they could be used. I think I remember back then that they hoped it would help cure or treat cancer... but clearly, the mechanisms by which cancer grows are much more complicated than they might have thought (or than they might think now, for all I know) 20-odd years ago. Still, I have hope that now that they've come out with a few of these drugs, more and more will be available. Plus I think that the research itself is super-cool.... at least until they start doing serious research into nanobodies or nanonites.

Anyways, back to the conference. Aside from the main speech, the conference had workshops on both Saturday and Sunday. On Saturday I went to a workshop on Sexuality and Intimacy. The speaker was a man, which is unfortunate because the workshop wasn't well-attended even though many, many people asked questions about sex in the "ask-the-experts" forum the next day.

Anyways, I learned that some anti-depressants have a negative effect on sexuality and if the anti-depressant can't be changed, the woman can take Cialis so that she's more interested and more able. I also learned that it's important not to put all the eggs in one basket in an all-or-nothing way: just because a woman might not be able to have intercourse doesn't exclude all types of sexuality and intimacy. I think that these ideas are useful for non-breast cancer people, too. Who knew that women could take Cialis? And that it would have a positive effect? I didn't before, but I do now.

Sunday I went to a Pain Management workshop. That was also small, which was fine, because I function better in a small group setting. That talk was quite interesting. The speaker focused a lot on telling the healthcare people not only that one is in pain, which is very important, but also to try to describe that pain. She also talked about the fact that pain, and therefore pain control, is individual. Each of us feels pain in a unique way and each of us responds to painkillers in a different way. Some of us metabolize these drugs differently than others, and that's ok. Some of us need more of the drugs than someone with comparable pain, and that's ok, too. I came away feeling reassured that I'm not a freak and that it's ok to want to get rid of the pain.

Of course not all pain is cancer pain... and in talking casually with other conference participants, I learned some things about the pain I'm experiencing. As a reminder, I have pain in my lower back, in my hip joint when I bend my leg in certain ways, and on the outside of my hip.

The person I was talking to said that she had pain in that exact spot on the outside of the hip and that hers was bursitis. I looked that up on the internet and I could very well have bursitis there as a side-effect of trying to walk with the pain in my lower back that spreads down my leg, and the occasional pain from my hip joint. After all, my mutant elbow (which is down by about half now) is bursitis and caused by not gripping the cane properly. It stands to reason that if that could cause mutant elbow, walking badly could cause swelling and pain in the hip.

So after all of this, I think I want to see a physiotherapist and/or chiropractor (or an orthopedic person) to see if we can't get me back in balance in such a way as to get rid of the pain in my lower back AND deal with the pain in my hip as well. There's no sense getting rid of one if the other's still there if they're connected, right? I might get rid of my limp and my cane yet!

Overall, I'm very, very happy that I went to the conference this past weekend. I'm happy that I met the people I did, spent time with the people I did, and learned the things that I did. I wish that I could go to more of these, but there's only so much that I can do and so much money that I have. I'll go as often as I can, though, because being with my met-sisters is good for me in a way that I can hardly explain.

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