Thursday, July 29, 2010

A quote I found quite apt

I’ll always be beautiful. Look at me. I have one hundred and sixty two bug bites, and has it made me any less beautiful? No! It just makes me more interesting! I’ll always be like this, stuck in this beautiful form, and you’ll have to deal with it.
Fire, Kristin Cashore

Thursday, July 22, 2010

BTW, emo posts like the last few are why I haven't been posting that often. As I make the transition from patient to survivor, I'm doing a lot of emotional work. I feel like a cow, barfing up little bits of the experience to chew on them for a while and sort them all out. As my tongue pokes and prods at the nuances of the experiences, I'm reluctant to write about them. My feelings on most of these issues are transitive and constantly evolving. The commitment of freezing them on the internet is a leap I'm not ready to make (consider that your metaphor smoothie for the day).

Plus, who wants to read emo crap like that? If you guys wanted to feel emo, you'd rent Heathers and listen to Bright Eyes and make an artistic tumblr, right?
Sometimes, I kind of miss being bald. It made playing the cancer card a lot easier.

In other news, there have been a couple of instances recently when I have told people that I had/have cancer, and they ask if I'm in "remission." I have no idea how to respond to this. First off, because I had operable breast cancer, I don't think I'm a candidate for remission. I'm either cured, or not cured. On the one hand, my tumor has been removed and there has been no evidence of metastases. So, I think that means I'm cured. On the other hand, I still get an infusion every three weeks, so I'm still in treatment. And on the other other hand (just pretend you're that soccer octopus for a second here), I doubt any doctor would say I'm cured. There is always a chance for relapse, and I'm not really trying to tempt fate here. (If you think that's superstitious, you should see me analyzing my data and praying for significant results.)

Since I'll be taking pills as part of my hormonal therapy for the next 5ish years, at some point I will need to make a verbal transition from cancer patient to cancer survivor. Making the verbal transition means making the mental transition as well. That's something I'm not really ready to do yet. I'm still dealing with the effects of the Avastin and a lot of post-chemo fatigue. My body is still kind of wandering around in a daze thinking "WTF just happened to me? Where am I?" It's not ready to jump back into the game. I think that saying I'm a cancer "survivor" indicates that I'm back to normal, and I'm so clearly not. I'm in a period of transition, where I'm beating a new path between pre-cancer normal and post-chemo, post-surgery normal.

The weird thing is that my hair is very much tied up in this period of transition, way more so than my breasts. Part of that is because hair can be tied up and breasts cannot. Another part of it is that, unlike my mastectomies, which I see as battle wounds, scars that will always be there, my hair growing. It's slowly but surely making its way back to its previous state.

But, it's not there yet. So, every day, when I look in the mirror, I don't see the longer hair of pre-cancer me or the baldness of chemo-me. Instead I see this short haircut that, although I rock it like whoa, I never wanted. I see all of the time it's going to take to grow out.

For me, that regrowth time kind of symbolizes all of the work, physical and emotional, that needs to be done before post-cancer me begins to feel like normal-me. It's a manifestation of the road back to myself, and how, even though, the cancer has been removed from my body, it will be a long time before becomes just another thread in the cloth of my life.

Wednesday, July 21, 2010

The FDA Advisory Panel just recommended in a 12 to 1 vote that the FDA revoke its approval for the drug Avastin in breast cancer. I just got my 8th post-mastectomy cycle of Avastin as part of my clinical trial last week. From now on, I'd like all news stories on this subject to address what people in my particular situation should do. All 10 of us.