I'm Dying Over Here

I hate doctors.

When I first got diagnosed with breast cancer, I immediately went on the internet. I was not going to be passive like my mother was when she got breast cancer; she just threw up her hands and said, "Do whatever you need to do." I want to know what they're doing to me, why they're doing it, and how I'm going to benefit from it. If something's potentially going to kill me, I think I need to know it. When I walked in the first day to meet with the oncologist, I had a list of chemo I was willing to do and chemo I wasn't willing to do. I stunned that doctor so badly, she sat there with her mouth hanging open. I wish I had a photograph of this woman. I told her, "When it comes to my body I want to know what's going in it, because I know some of this chemo can have some horrible side effects." I told her what protocols I was willing to do, and she said that she had never, ever met anyone like me in her entire life, and I totally threw her off. She was like, "I've got a patient who's more intelligent about oncology than anyone I've ever seen."

Doctors set it up so that cancer patients don't know what the hell is going on. This encourages patient ignorance. I run into a lot of people with cancer who just don't want to know anything. All they want to know is, "Am I going to live or am I going to die?" Not exactly a healthy attitude to take. I was told three years ago I wouldn't be alive in three months, and I'm still here, and I think a lot of it has to do with the fact that I'm obnoxious. Even my grandmother, who died last year at 106 and had breast cancer several times, pulled me aside in West Virginia and said, "You know how I know you're going to have a long life? Cuz you're just as big a pain in the ass as I am." She said, "You keep questioning those doctors, and if you're not comfortable with what they're doing, then you don't let them do it."

One of the worst things I've been through with a doctor is still going on. It's these damn breast implants. Dealing with these things has been a saga to rival the Bataan Death March.

I was a real chesty woman before I got cancer, and I hadn't taken my risk factors too seriously. I mean, I think everybody gets into this mindset of "It won't happen to me," and because I don't smoke and I don't drink, I always figured I was home free. Bad attitude to take.

It all started on a flight from Chicago to Dallas. I was working for a major software company as a presales consultant, and I had to do a lot of flying. And I was noticing that I was getting more and more fatigued as time went on, and I had this strange pain in my shoulder. And I thought, "It's gotta be from hauling this laptop around." So I was in an aisle seat, and as we were getting up to get off the plane, this guy popped open the overhead bin and his laptop fell out and hit me in the chest. I felt something when it hit, and I said, "That didn't feel right." It really hurt. When I got home that night, I noticed that the pain was coming from the outer left quadrant of my breast, and I knew that that was not a good location. Typically cancer starts in the outer quadrants of a breast, and that's where it started in my mom. I got in the shower to check myself out, because I thought, "Well, I need to self-examine because I haven't done this in a while." And I found a lump in there that was just about the size of a baseball. I was like, "Holy cow." I was a big Titanic junkie at that time—I saw it about 50 times in Houston. I think I hold the record for having gone the most times. Immediately upon finding that lump, I flashed on the Titanic sinking, and I said, "Oh my god, my boob's the Titanic. I'm in dire trouble."

Long story short, I ended up having a double mastectomy. After that's done, you get implants. In certain women, like myself, they have to stretch your skin out for you to be able to handle an implant. The skin- stretching is very reminiscent of what they did to the Jews in the Holocaust, where they made human lampshades. It's an extremely painful process.

After they've taken off your boobs, they sew what they call an "expander" into your chest. It's kind of like an implant except it's empty, and they gradually put saline in it. They inject it into a catheter that's in the implant. You have to go back every week, and they inject you with more saline to get your skin to stretch out. So you're going through this process where they're making your skin feel like it's ripping and pulling, and you have to go through that for six months. That's how long it took me.

Then they remove the expanders and put in the permanent implants. I wanted to be a B-cup and, in total arrogance, my plastic surgeon said, "Oh no, you'd look better as a C-cup." I had been a D before, and I didn't want to be huge again. I'd gone through the huge boobs and the sore back and neck, so I told him no. I said, "I don't want to be a C-cup." Well, guess what? When I woke up from surgery, I was a C-cup. He blatantly disobeyed my wishes. And now, a few years on, I've got an infection under the implants and the whole thing is about to start again!

This is the problem I have with most doctors. I think that, as patients, we know our bodies better than our doctors do, but doctors don't see it that way. They've gone to school, so they're the holy people. We're just ignorant little pissants.

Toni has advanced breast cancer, and she also runs the amazing website bluelips.com, where she sells graphic autopsy videos, the butt plugs they put in corpses when they travel to prevent "anal leakage," and a million other gross and fascinating things. This is the first installment of her new column for Vice.