Last summer, I wanted to go to ComicCon but couldn't because of my chemo schedule. So my friend Brendan promised to take me this summer. Unfortunately, Brendan was a complete style biter and thought it would just be awesome if he had cancer, too. So we couldn't go this year because of his chemo schedule.
You know what that means for next year, right?
DOUBLE CANCER CARD IN EFFECT!
We will be unstoppable. Let's see Robert Pattinson refuse to make out with Tom Sturridge when faced with that! It cannot be done!
(Seriously, though, Brendan, stop copying me. It's embarrassing.)
Friday, August 6, 2010
Avastin, maties!
I got my second-to-last Avastin infusion yesterday. Yes, I decided to continue to get the drug even though the FDA advisory committee voted to rescind its approval for treating breast cancer. I figured that I'd rather regret getting treatment than not getting treatment. I also figured that if I'm going to start regret taking drugs, the Avastin isn't going to be where I start. College years, I'm looking in your direction.
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
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?
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.
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.
Tuesday, May 25, 2010
( . ) ( . )
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.
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.
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.
Thursday, May 20, 2010
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
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
Monday, March 15, 2010
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."
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."
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