Sunday, May 23, 2010

Day 19

So, for those who have been wondering, I haven't updated in a while because there's really not much to say. I was very busy at work for the last week, as my big conference took place and I stayed downtown on Wednesday and Thursday, since I didn't need to come home and nurse the baby. It was hard to be by myself on Wednesday, except that I enjoyed having the king sized bed to myself. It just really hit me that every show on network tv is some really violent cop show crap that you don't want to watch when you're thinking about your mortality all the time. Gabe came to stay with me on Thursday, and we went to dinner at the Lockwood and wandered around the loop, which was nice, while my mom babysat the kids. I think I only cried once that night.

So in the midst of my internal drama I managed to do all this stuff at work and take care of the kids and still feel kind of like I was living someone else's life. The conference happened, it was a success, and I managed to do a little bit of small talk, but not too much. They usually rely on me to do the non-economics talking, but I just couldn't get too deep into conversations about sports or other people's kids with my mind wandering back to the BRCA test or whatever all the time. And when little snafus happened, I had to admit that I wasn't worried in the least. Conference on the one hand, breast cancer on the other. Trump card, anyone? Cancer does give you that--I was able to ditch my own conference reception, using the logic that "due to an overwhelming case of CANCER I will be unable to attend."

Plus, I managed to catch Augie's cold, so I kind of sound like a dragon lady with this laryngitis, and talking would have been difficult regardless. The hardest thing about the conference was that last year, it happened two weeks before Augie was born, so I was as big as a house and waddling around. A bunch of people who saw me this year were telling me how great I looked (mostly men) or how pretty my hair looked (women). I really wanted to slug everyone who said something like that to me, but of course they have no clue, and that's my problem, not theirs.

Can you tell I haven't gotten over this part about not wanting to be bald? I just hate waiting and pretending to live a normal life while I know that soon I will be getting some prognosis handed to me, and then I will go through some horrible treatments that will make me look like a boy, an old lady, whatever. It's the public nature of cancer that's tough. You can't hide it like you could something else. If I suddenly show up at work with no hair, or with a scarf on or a wig, people are still going to know. And that's fine, but then you deal with the pity and the fear and everything. People cry around you and you wonder, am I the walking dead? Because right now I don't feel like it. I have a cold, but otherwise things are working pretty damn well.

I'm still mad about that--about taking a healthy body (except the cancer part) and putting it through hell, some of it temporary, some of it not, just to keep living. If you get hit by a car, that's immediate--the effects are right now, and I think that's easier to deal with somehow. This just creeps up on you. That's apparently especially true with breast cancer if you're nursing. Now that I'm no longer engorged, this tumor (I guess I do have two, plus a cyst) seems huge and feels like a jagged marble. It hurts all the time. It's like I was walking around and then WHAM. Cancer--big and obvious, and I and my husband must have been morons not to see it. There's no way anyone would have told me it was a clogged duct or anything but cancer if it felt like this. So of course I'm convinced it's much bigger, spreading, etc., but I'm being told it just feels different because the milk is gone. I wonder if I've had this the whole year I was nursing, or even when I was pregnant, but I couldn't feel it. Then it doesn't seem like I caught it so early. They still tell me I'm "lucky" I found it, but I think what they're really trying to say is what my ob told me straight out: "I think you saved your own life."

It's hard to be proud of that one. I shouldn't be doing that at age 34. I shouldn't have to be angry every time someone tells me a story about a 5 or 10 year cancer survivor. In 5 years, I'll be 39. My kids will be 9 and 6. In 10 years, I'll be 44, and my kids will be 14 and 11. Sorry, but that isn't good enough or long enough.

I'm going in to see my surgeon on Tuesday just so she can hopefully tell me I'm nuts and the tumors are the same size. They might be sick of me calling all the time, but I don't care. It's as if they diagnosed me, did a few tests, and said, yes, it's cancer, see you in a month. Now, that's not really how it's been, but this past 3 weeks has been infinitely longer than even the last month of pregnancy, or the first month in a wheelchair, or anything else I've experienced. I'm having very literal dreams about getting my BRCA test back and having a double mastectomy, and because I know how sad that will make me if I have to do it, I just need to KNOW. Damn this company with their patent and their $4,000 test and 2 week wait time. Women shouldn't have to go through that.

On that note, this whole experience makes me think a lot about the things in women's health that doctors don't know or even pretend to know. It seems like a huge number of women 45 and under who get breast cancer recently had babies, miscarriages, were nursing, just went off the pill, etc. And yet it's not related, they say. Then why did you ask me 7 questions about the pill in that questionnaire? And it's the way they talk about "choice" that kills me. If you have testicular cancer, they don't just say, ok, let's take them both, even if it's only in the one. With other cancers you don't seem to make as many decisions--they tell you what to do. It's as if people think you want to keep your breasts because they're breasts, and you're vain. Or that you could get rid of them because you don't need them. Well, you don't need your testicles, or your feet or arms to live either. I want to hang on to them because they're a part of my body and if they're not broken, I don't want to fix them. I'll do the stupid double mastectomy if I'm BRCA positive but I will not be happy about it. I just wish there wasn't this idea of "well, you could still do it even if it's not necessary" to make you second guess yourself all the time.

I mean, I don't think I would have done anything differently in my life if I had known I would get breast cancer. But I'm suddenly learning that there are risk factors that most women don't know about. You can't control many of them--like getting your period before you're 12, as I did. Or having your first baby after 30. I was 30 when Lenny was born, and almost 12 when I got my period, so does that put me on the breast cancer fence? But, if having my kids had anything to do with it, I would have done it anyway, and I am glad I got the chance before I found out. Also, I don't feel bad about being on the pill for 11 years. But I do wish they had a clue what was going on, because so many young women have this disease, and youth is not in your favor with cancer. Your body is not lazy, and neither is the cancer.

And neither am I, even though I've been a little bit more of a hermit. I've seen a lot of people this week, and have even been kind of social. If you see me, I will probably be talking about cancer quite a lot, but I'm finally capable of talking about other things. I still have my moments. I started crying at Lenny's second dance recital, wondering how many I'll get to see. I've done weird things, like let people who aren't my husband take topless pictures of me. I start staring off into space and get quiet, and I can't remember what we were talking about. But I'm out there. I might want to crawl into a hole when I'm bald and have a chemo port and I'm weak and in the middle of the nightmare, but maybe you all can come get me and bring me out so this summer and fall will seem a little brighter. Sound good?


  1. That sounds very good.

  2. Sounds great! Wish I were closer and could actually DO that regularly!
    Love you Katy.
    Sorry I missed your call the other day. I'll call you, I really want to hear your voice.
    Love, Kairos