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.

( . ) ( . )

I've been thinking about breasts and reconstruction a lot lately, and I kind of felt like I owed it to anyone who was facing cancer and stumbled on this blog to document those feelings.

As I think I've made pretty clear, for the most part, I LOVE not having breasts. I love the way I look in clothes. I love not having to put on a bra. I love wearing tank tops and summer dresses and bathing suits and not worrying about if I'm showing too much cleavage or if my bra strap is hanging out. I love that my chest doesn't feel heavy and unwieldy anymore.

Given my love of boobless me, you'd think I'd be all "fuck reconstruction." And for about 90% of me, you'd be right. But there is this 10% that won't let me embrace my flatchested self.

So, when does this 10% rear it's ugly head? When I'm flipping through Details in the check out aisle (Don't judge me! RPattz was on the cover!) and see the girls flaunting their cleavage and I think, "I don't have that any more." Or when I flirt (harmlessly, of course) with the bartender, I think, "If I picked him up, he'd be so disappointed when he saw scars instead of breasts." I feel, in some ways, like I'm damaged goods. Like people wouldn't be happy with me in my current package. And that second of self-doubt tends to slice me to the core.

It's usually at that point that I consider getting reconstruction. And while I think reconstruction would abate the distress caused by thought #1, it doesn't really address thought #2. I'd still have breasts that I'd feel self conscious about when I was naked. So, why bother getting surgery and going back to the world of bra straps and inadvertently slutty cleavage if those feelings would be unresolved? I'd still feel damaged, and fake breasts can't fix that. Those feelings just need to be dealt with.

There is one other element that comes into play: After I have that moment of self-doubt, I tend to immediately have a second thought. That thought generally starts by reassuring me that I'm awesome (I'm a big fan of positive self talk). Then I remind myself that I have fought a war. I have ridden into battle and I have come out victorious. I have beaten and killed my enemy. My foe lays vanquished. And that war was hard and it left scars. It robbed me of things that I will never get back. And the scars that mark my chest should remind me every day, not only that things were taken from me in that war. But they should also serve as celebrations of my domination over cancer. They are proof that I should wear as a badge of valor. Evidence that I went into battle and came out the victor. I shouldn't be ashamed of them. I should be proud. And when a cute bartender sees them, he should be amazed by my courage and strength and fall to his feet, trembling, and worship me like the hero I am.

And I don't want to cover up these scars with fake breasts. I don't want to pretend like things are back to normal now. They aren't and they never will be. I don't want to act like cancer hasn't been hard or that it hasn't stolen things from me. Instead, I want to be reminded of what I've been through and celebrate it for the triumph that it is! I want to remember the sacrifices that I've made for it, but in remembering them, rejoice in my perseverance.

Maybe this will change with time, but for right now, I'm fighting down those bits of insecurity by reminding myself that I am a badass motherfshutyourmouth.

I got my hair did

I got my first post-chemo haircut last week. Here are the results:

Before:

 

After:

Honestly, I wasn't too happy with the after. While I've been really enjoying the butch lesbian vibe that my short hair and flat chest have given me, the haircut just took it a step too boyish for me. However, as it's been growing out, I'm starting to like it a touch more. If that trend continues, I'll probably post another picture before too long.

I've gotten some questions about whether the color and texture of my hair has changed. The answer to both is yes. Before chemo, my hair was mostly brown with some gray. Now it's mostly gray with some brown. Of course, Clairol took care of that problem right quick!

The texture has also changed a lot, but I'm not sure how to describe it. Before it was, I don't know, regular? Now, it's like scalp poop. It's just dry and wiry and coarse. The rest of my body hair has changed, too. It's weird and I'm hoping that it goes back to normal. If not, we all know I look bitchin' with a shaved head.

It's been a long time, I shouldn't have left you without an update to step to

Yesterday marks the one year anniversary of the doctor telling me she strongly suspected I had cancer, and tomorrow marks the one year anniversary of finding out I definitely had cancer. In honor of that, I figured I'd do an update (also, because people keep asking me if I've deleted them from the update list).

So, what's been going on in Cancerland since we last corresponded? For the most part, things have been really, really boring. Radiation was boring. I just went every day and lay down on a table for 15 minutes and left. Sometimes I got to watch a little of the Price is Right in the waiting room, but Drew seemed to be in a funk so it was bittersweet. Radiation made me really tired, and during the last week, I had some burning and peeling. But it was nothing compared to the time I forgot to put sunscreen on my feet and couldn't walk for 3 days. So, boring.

My new Avastin-only chemo is really boring, too. It's only a half hour infusion, so there is barely time to watch a whole episode of trashy TV (truly the highlight of the chemo experience). Last time, I didn't even get to see the birth on 16 and Pregnant! And compared to "real" chemo, the side effects are pretty lame. My sinuses hurt and I get tired really easily and I have a lot of headaches. In terms of drama, needing to pop a sudafed and an advil doesn't really compare losing my hair and crapping blood (I never told you guys about that one, did I? Surprise!). So, there just hasn't seemed to be anything worth talking about.

So, while cancer has been boring, I've been doing a lot of ~thinking (I know, don't hurt myself) and having a lot of ~feelings. (Aside: For those of you who aren't familiar with the internet shorthand, a tilde basically means the same thing as air quotes would in speech.) On the one hand, having cancer has become so much a part of who I am that I can't even conceive of myself before cancer. But, I still also can't conceive of myself as a person with cancer. In my conceptualization, cancer isn't something that kills people. Cancer is just something that makes you go to the doctor a lot and meet nice people and take a bunch of naps. It makes me special, but it's not dangerous. And then every so often, I will see someone on a TV show or movie where cancer is used as shorthand for "about to die" or "horrible illness" and I have this moment of "Holy shit! I have cancer! I could die from that!" Then I get this pang of anxiety that just slices through my psyche for a second before I go back to pretending that I'm just having a fun adventure.

That being said, I've made a few changes that have been making me feel more optimistic not having to ever go on this particular adventure again. I've started seeing a nutritionist, working out every day, and being more discerning about the things I put on or into my body. That's really helped me feel in control of my health. After a year of feeling like my body belongs to anyone but me, it's really nice to feel like I have some say.

Also, I think I'm technically a "survivor" now instead of a cancer patient, although I retain all rights to pull the cancer card until I'm done with this new round of chemo. However, I might get one of those "I made cancer my bitch" t-shirts. Because, what's the point of having cancer if you don't exploit the chance to wear novelty shirts?

Over and out,
HM

OMG, Karen, you can't just ask people why they're white.

Two things:
1) Today, one of the button's on Dr. Derdel's collar was undone. I hope he's okay! It's so unlike him that I'm a little worried. I didn't want to mention it to him, though. That would have brought shame upon us all.

2) I had my second chemo infusion with The Toucher. At first, I was relieved because he didn't go in for the handshake. But, no, instead, he sat in front of me and PUT HIS HAND ON MY THIGH!! AND KEPT IT THERE FOR THE WHOLE APPOINTMENT. It's not like it was sexual or anything. There was a nurse in the room the whole time, and besides being a serious red-alert type breach of my personal space, there was nothing unsavory about it. Still, someone needs to pull this guy aside and tell him that this is not how we do things in the U.S.of A. If only Gretchen Weiner was round to be all, "Oh my god, Dr. [name withheld to protect the innocent], you can't just touch people on the thigh."

Did you know that once you die, you can still use the internet? It's true, because I've had two experiences within the last week that have made it quite obvious that I'm in heaven.
1) I was roller skating (my favorite activity in the world) to indie music!
2) Law and Order (maybe my favorite show in the world) did an episode on juggalos!

It's like life has suddenly become custom tailored for my enjoyment!

(Or is that creepy for a cancer patient to say? Whatever, I said it.)

Onto the news -

As you know, I've started radiation, but still have not developed any (known) super powers. I'm really hoping for invisibility, the ability to vomit on people when they say stupid things, and/or to be like The Dazzler.

Radiation itself is pretty boring. I just lie on this table, and some techs figet with me until my body is positioned just so. Then they take some pictures (x-rays, I think) and then they come back out and put a cold spongey thing on my chest (so the radiation doesn't go too deep), and then this giant machine moves around me and radiates me. The whole process usually takes about 30 minutes from the time I get there until the time I leave, but some of that is getting dressed and waiting around. They easily have the best waiting room ever, though. There are cookies and sodas and fruit (on Mondays and Tuesdays) and graham crackers. Plus, they have the best cancer magazines. It's like the People or OK! of cancer, where the stories are kind of salaciously great. None of this "Sheryl Crow beat breast cancer and so can you!" No, these stories are like, "Have Better Sex with Cancer!" Awesome!

When I was lying on the machine today, with the sponge on my chest, I started thinking about how little I know about the radiation process. I know that it's meant to destroy the cells in my chest walls and lymph nodes. All of the cells are harmed, but only the healthy cells recover over time. And I know that the main side effects are burns on the skin and fatigue. But that's about the extent of my knowledge. It's just so technical that I'm not that interested.

Chemo, on the other hand, fascinated me. I knew how many of the chemos worked on a microbiological level. I loved reading about that stuff. I wonder if I am naturally more interested in biology than physics (very possible) or if I'm just suffering from information burnout.

My radiation oncologist, Dr. Derdel, is a fastidious dresser and groomer. He kind of looks like a mating of Anderson Cooper and David Bowie. For some reason, I find his appearance very comforting. I mean, if he's able to maintain his a hairstyle with an uncanny level of precision, imagine my how meticulous he must be about my treatment! He's also reached a mythical status in our home, with messes being greeted by "What would Dr. Derdel say about this?" or "You'd never see something like this in Dr. Derdel's home."

I also got my first Avastin infusion, but it was boring and there isn't much to say about it. Mostly it (and the radiation) have just made me overly tired. But there was no nausea or anything.

And on that note
-Dazzler out!

I've been going to radiation for over a week now. WHERE ARE MY SUPER POWERS?

I've been takin it slow, I wasn't around. But the [laptop] crash couldn't lay the hustler down

What's up bitches? I'm back. My laptop was failing, and for a while I was using a netbook that was killing my soul. But after some reconfiguring, I'm happy to report that I'm back, and fiercer than ever. Or something.

Lots of news to share about radiation and new chemo and all sorts of stuff. I'll be writing it all up soon, pussycats.

I am having phantom nipple pain right now. Weird.

I've gotten a few requests regarding the pathology report, and I've kind of been waffling for a while about whether I want to share the information. There were no surprises in the report. It was neither particularly good or bad. In fact, it was pretty much exactly as I expected. I had a big tumor that chemo had shrunk some, but not all. I had some positive lymph nodes, but not all of my nodes were positive. My margins were clear (they were able to excise the entire tumor).

I'm reluctant to share the details because the path report doesn't provide any meaningful information. It doesn't change my course of treatment. It doesn't say whether my cancer is gone or not. It doesn't even give me valid information about my chances for survival. I know that we all need comfort right now, but there is no comfort to be found in the path report. Even at its best, this information provides a false sense of comfort. At its worst, it provides a potentially false sense of despair.

The fact of the matter is that this is a difficult process that's fraught with unknowns. I think it's important not to look for answers where there are none to be found. Sometimes, there is just no certainty to be had. That's just the way it is. And as I struggle to accept this, I need others around me to be cognizant of it as well.

In lighter news, I met my radiation oncologist today. I'm pretty sure today's theme was 70's ski lodge. I'm hoping for 80's hair metal next time. Also, when I asked where I marked down which super powers I'd like to receive, they let me know that usually super powers develop randomly, but they generally emerge soon after the first treatment. So, as of next week, I may be able to fly (which could require ab strength I don't currently have).

OMG you guise. My new med onc is a toucher. He's from, idk, India, Pakistan? (I know that confusing Indians and Pakistanis is pretty offensive, but I can't tell the cultural nuances or accents apart. Also, after all of this, he's probably Egyptian.) So, it's probably a cultural thing, but he must have held my hand for at least three minutes straight. It was so awkward.

But he seems really competent and was plenty nice. He also remembered me from the time I called him about having a fever (or something).

Why do I have a new medical oncologist? Because my normal one didn't take my needs into consideration while doing her family planning and went and had a baby. The bitch. This is almost as bad as the time my surgical oncologist went to visit her family for Xmas. I had to wait a whole extra week to have surgery. So selfish!