So this picture kind of sucks, but if you look closely, you'll notice that I'm wearing a barrette. Do you know how long it's been since I could wear a barrette. Also my office is cleaner And I have a new watch band.
Tuesday, November 30, 2010
Monday, October 18, 2010
This is really cool
A friend of mine sent me this link: http://www.thescarproject.org/
It's really nice to see someone celebrating the beauty of mastectomy scars. I want to be a model! (work, work, fashion, baby)
It's really nice to see someone celebrating the beauty of mastectomy scars. I want to be a model! (work, work, fashion, baby)
Monday, October 4, 2010
A post regretting wasted opportunities
All last October, I fantasized about witty retorts I could give when someone asked me to donate to Breast Cancer Awareness. Things like, "Trust me, I'm perfectly aware of breast cancer." Or, "Why, yes! I am accepting donations!" Of course, last October I was bald, and I have a feeling my intimate relationship with cancer was obvious.
Now, with my luscious head of practical lesbian hair, I walk around incognito, and an unsuspecting clerk at my local Staples asked if I would like to buy a pink breast cancer pen. And, I, in my typical D.C. resident way, was so annoyed that she was trying to up-sell me that I reflexively said, "No," before I'd even processed the question, and I watched this golden opportunity for snark dissipate in the wind, gone forever, like my nipples.
And the worst part, the up-selling worked because now I'm going to go back to Staples just in case they give me another chance to be snarky!
Now, with my luscious head of practical lesbian hair, I walk around incognito, and an unsuspecting clerk at my local Staples asked if I would like to buy a pink breast cancer pen. And, I, in my typical D.C. resident way, was so annoyed that she was trying to up-sell me that I reflexively said, "No," before I'd even processed the question, and I watched this golden opportunity for snark dissipate in the wind, gone forever, like my nipples.
And the worst part, the up-selling worked because now I'm going to go back to Staples just in case they give me another chance to be snarky!
Friday, September 24, 2010
Yesterday, I sent gift baskets to my oncologists to let them know how much I appreciated them. Because, you know, nothing says, "Thanks for saving my life!" like a gift basket. I got the ones with sausage and everything, so they'd know I really meant it.
My hair is long enough to have a part now! Check it out! (Also, check out my awesome new military watch. That calculator watch is old news.)
My hair is long enough to have a part now! Check it out! (Also, check out my awesome new military watch. That calculator watch is old news.)
Friday, August 6, 2010
ComicCon
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.)
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.)
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."
Tuesday, March 2, 2010
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!
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!
Thursday, February 25, 2010
Tuesday, February 23, 2010
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.
Lots of news to share about radiation and new chemo and all sorts of stuff. I'll be writing it all up soon, pussycats.
Thursday, February 4, 2010
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).
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).
Tuesday, February 2, 2010
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!
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!
I love the women at the Breast Center so much. Whenever I have an appointment, different nurses and administrators stop in the exam room, and say, "Hey! I saw you were coming in, and I wanted to stop by and see you!" and chat with me. The always recognize me when I walk in, and I never get "called back" to see the doctor. They just wave at me and say, "There you are, girl! Come on back!"
Today, I needed to get a copy of my mammogram, so I called and started off with "My name is HM, and I'm a patient there, and the receptionist was immediately all "Heeey! How are you?" It makes me feel good inside my heart.
In other news, my hair is still shedding even though it's been like 3 months since I had chemo. WTF?
Today, I needed to get a copy of my mammogram, so I called and started off with "My name is HM, and I'm a patient there, and the receptionist was immediately all "Heeey! How are you?" It makes me feel good inside my heart.
In other news, my hair is still shedding even though it's been like 3 months since I had chemo. WTF?
Monday, February 1, 2010
Wednesday, January 27, 2010
Monday, January 18, 2010
For the most part, I haven't missed my breasts at all. I miss wearing a bra, but only because I feel under dressed every time I leave the house. Otherwise, not having tits has been pretty great.
However, a couple of friends were talking about my pets' nipples and it suddenly struck me. I don't have those anymore. At all. I am a person existing in the world, traveling through life, who doesn't have nipples. Weird.
However, a couple of friends were talking about my pets' nipples and it suddenly struck me. I don't have those anymore. At all. I am a person existing in the world, traveling through life, who doesn't have nipples. Weird.
Monday, January 11, 2010
Sunday, January 10, 2010
The area formerly known as my boobs hurt. Pity me!
(Also, I'll run out of pain meds right in time for my doctor's appointment, which means I'm going to have to ask for more. Am I the only one who feels really sketchy asking for narcotics? I'm sure if I watched less Intervention, it wouldn't be such an issue.)
(Also, I'll run out of pain meds right in time for my doctor's appointment, which means I'm going to have to ask for more. Am I the only one who feels really sketchy asking for narcotics? I'm sure if I watched less Intervention, it wouldn't be such an issue.)
Friday, January 8, 2010
Surgery was a success. I no longer have breasts or nipples, and it's actually more awesome than I imagined it. I haven't missed my nipples once so far. I still, however, feel like I'm naked all of the time, because I'm not wearing a bra. Weird, no? I wonder when that will go away.
For years, I've been really curious about how much my breasts weighed, and I thought this would be the perfect (and last) chance to find out. However, so far, I've been unable to get a definitive answer. I've weighed myself a couple of times since the surgery, but it hasn't been very informative. First off, I have all of these drains attached which collect blood and fluid, so they are adding some weight. But, I haven't been eating very much, so I've probably lost a little weight. And then, the pain meds back me up (if you, uh, know what I mean), and I'm a little bloated from the anesthesia. So that's probably also distorting the numbers. So, who knows? Right now, I'm about 3 to 5 pounds less than I when I went under the knife, but judging from the grooves in my shoulders left from my bra straps, I'll be a little disappointed if the girls didn't weigh more than that. At any rate, after gaining weight during chemo, it's nice to see the drop on the scale, even if it doesn't mean a smaller pant size.
For years, I've been really curious about how much my breasts weighed, and I thought this would be the perfect (and last) chance to find out. However, so far, I've been unable to get a definitive answer. I've weighed myself a couple of times since the surgery, but it hasn't been very informative. First off, I have all of these drains attached which collect blood and fluid, so they are adding some weight. But, I haven't been eating very much, so I've probably lost a little weight. And then, the pain meds back me up (if you, uh, know what I mean), and I'm a little bloated from the anesthesia. So that's probably also distorting the numbers. So, who knows? Right now, I'm about 3 to 5 pounds less than I when I went under the knife, but judging from the grooves in my shoulders left from my bra straps, I'll be a little disappointed if the girls didn't weigh more than that. At any rate, after gaining weight during chemo, it's nice to see the drop on the scale, even if it doesn't mean a smaller pant size.
Sunday, January 3, 2010
Well, my little ronin warriors, tomorrow is mastectomy day, and before I begin my new life as a battle scarred warrior, I thought it might be time for another (epicly long) update.
First off - The results from my post-chemo MRI
Well, I still have a tumor, so that sucks. But, it is at least somewhat smaller in all dimensions (and nearly 2 cm smaller in one dimension), so that's good. However, according to the MRI, it's still 5.5 cm in one dimension, which could have implications for staging (see below). There are also fewer enhancements (which, as far as I can tell is a terrible misnomer for parts of the tumor which branch out), and they no longer reach back towards the chest wall. And, the tumor walls, which were convex, are now concave. All of this is good news, and my surgical oncologist was very pleased. Apparently, some patients don't have a measurable response to chemo, which, in my opinion, would be almost as bad as having to watch a badger rape a unicorn.
Another reason for optimism is that a lymph node that was detectable on my pre-chemo MRI can't be seen on the post-chemo MRI. This doesn't necessarily mean that the cancer is gone from my lymph nodes, but it does mean that I have less cancer in that one. In your face, lymph node! Nothing would make me happier than to have clear lymph nodes, but I won't get definitive information on lymph node involvement until the tissue pathology report comes back after the surgery.
A quick overview of breast cancer staging-
After my surgery tomorrow, my tissue will be sent to pathology, where I will get official staging information. While we knew some of the factors we needed for a quick and dirty amateur staging, the only staging that counts is the one that happens after surgery. Staging essentially looks at tumor size and lymph node involvement. My potential stages could be:
Stage IIB - Tumor less than 5 cm, but with lymph nodes involved OR a tumor greater than 5 cm but no lymph nodes involved. (While I originally had a lymph node involved, it only matters whether there is cancer in the node at the type of surgery.)
Stage IIIA - Tumor can pretty much be any size, but lymph nodes are clumped together and sticking to other structures.
Stage IIIB - the tumor is any size AND has spread to the chest wall or breast skin AND the cancer has spread to lymph nodes that are clumped together and/or near the breast bone.
Stage IIIC - Cancer has spread to the chest wall and or breast skin AND to lymph nodes above or below the collarbone AND to axillary lymph nodes or lymph nodes near the breast bone.
I don't have detectable metastases, so I'm definitely not stage IV at this point.
(As a side note, my lump is affixed to the skin, but I don't think that necessarily means that the cancer has spread to the skin. But, honestly, I don't know. I'm sure they'll tell me when pathology comes back.)
As far as I'm concerned, knowing the stage is only really useful to lend a certain gravitas to playing the cancer card. I mean, the higher the stage, the greater the power of the card. And even if I was interested in my stage beyond the persuasive power it affords me, it's not really that informative. Sure, there are survival rates associated with each stage, but they aren't very meaningful. I mean, there are a ton of factors which are important for my survival that aren't captured in staging. For example, cancers that are hormone receptor positive are more treatable than those that are receptor negative. My cancer is extremely estrogen responsive (90% of the cancer cells were ER+) and somewhat progesterone receptor positive (10% PR+). That's great because that means my cancer is can be treated through hormonal therapy (i.e., one additional way to kill the cancer), and the hormone therapy should be very effective. The aggressiveness, or grade, of the cancer also matters. I have a grade 2 cancer, which is only moderately aggressive, so I'm in good shape there. My age and generally good health (besides the cancer, of course) means more treatments are available to me, and I can bounce back from treatments more quickly. So, that's good too. Basically, I could look at the prognosis for the different stages, but they would tell me very little about my personal survival outlook.
Another thing worth noting is that (and scientists that are reading this, you may want to look away now), statistics are basically meaningless to me now. I'm young. My family has no history of breast cancer and a relatively low level of overall cancers. I am already an outlier. Not only that, but even among young women with breast cancer, it is very rare for a woman my age to have a grade 2, ER/PR+ cancer. Most young women develop much more aggressive, much less treatable cancers. So even within my outlier status, I'm an outlier. And once you've been one of those one-in-a-million cases, it's hard to look at probabilities the same way again. So, I'm doing to do what my doctors tell me and take the best care of myself that I can, and otherwise I just don't worry about it.
(A little aside regarding cancer statistics: No one really knows how or when they are going to die. I didn't know that before I had cancer, and I don't know it now. So, I don't see much point in worrying whether or not the cancer will kill me. Maybe it will, and maybe it won't, but I could say that every time I get in a car or cross the street. I don't see any point to stressing about dying just because I have one more potential thing that could kill me than other people. I mean, I could have taken up an extreme sport, and it would have been the same thing.)
What to expect from the mastectomy:
Don and I are driving to Hershey tonight, and I have to be in radiology early tomorrow morning. In radiology, they will place a marker in my sentinel lymph node (a special sort of 'master lymph node'). Then, I go into surgery. For a number of reasons, I've decided to have both breasts completely removed at this time. I'll stay in the hospital overnight, and if everything goes well, I'll be released Tuesday morning. I've been told it will take a week or two before I can return to normal activity, and it will be even longer before I can lift anything.
Going forward:
Radiation:
After the mastectomy, I get a few weeks off to recover, then I start radiation and chemo 2 (electric bugaloo). I'll have 33 to 35 radiation treatments. Basically for 8 weeks, I'll go to the hospital (in State College, not Hershey) every weekday, and get beamed with radiation. I also get some tattoos so they know where to beam me.
Chemo 2
Chemo 2 will last for 30 weeks and begins right around when I start radiation. Every 3 weeks, I'll get an infusion of a single drug, Avastin. The side effect profile is supposedly pretty limited, and I had Avastin as part of my earlier chemo cocktails (although it's hard to figure out which side effects were from the Avastin and which were from the other drugs). My hair should stay attached to my head, and I shouldn't have the nausea or fatigue that "real" chemo caused. Also, since it's part of my clinical trial, I can stop if I want.
Hormonal therapy
Hormonal therapy starts after radiation (I think). This just consists of a pill I take every day for 5 years. The pill basically prevents the cancer from absorbing any estrogen or progesterone. It also makes my hormones all wacky, so with any luck, there will be some monumental bitchiness (or at least, I'll be able to blame the pill when I say whatever's on my mind). It has the potential to be pretty great.
Reconstruction
This will happen after I finish Chemo 2 and get around to it. It's just not a high priority right now. However, if you see a great looking pair of breasts on the internet, send them along so I can show them to the plastic surgeon. (DO NOT REALLY DO THIS. That would be weird and creepy.)
Alright, I'm off to pack my bags for the drive to Hershey. I'll try to send a quick update from the hospital once I get out of surgery.
Ninja out.
First off - The results from my post-chemo MRI
Well, I still have a tumor, so that sucks. But, it is at least somewhat smaller in all dimensions (and nearly 2 cm smaller in one dimension), so that's good. However, according to the MRI, it's still 5.5 cm in one dimension, which could have implications for staging (see below). There are also fewer enhancements (which, as far as I can tell is a terrible misnomer for parts of the tumor which branch out), and they no longer reach back towards the chest wall. And, the tumor walls, which were convex, are now concave. All of this is good news, and my surgical oncologist was very pleased. Apparently, some patients don't have a measurable response to chemo, which, in my opinion, would be almost as bad as having to watch a badger rape a unicorn.
Another reason for optimism is that a lymph node that was detectable on my pre-chemo MRI can't be seen on the post-chemo MRI. This doesn't necessarily mean that the cancer is gone from my lymph nodes, but it does mean that I have less cancer in that one. In your face, lymph node! Nothing would make me happier than to have clear lymph nodes, but I won't get definitive information on lymph node involvement until the tissue pathology report comes back after the surgery.
A quick overview of breast cancer staging-
After my surgery tomorrow, my tissue will be sent to pathology, where I will get official staging information. While we knew some of the factors we needed for a quick and dirty amateur staging, the only staging that counts is the one that happens after surgery. Staging essentially looks at tumor size and lymph node involvement. My potential stages could be:
Stage IIB - Tumor less than 5 cm, but with lymph nodes involved OR a tumor greater than 5 cm but no lymph nodes involved. (While I originally had a lymph node involved, it only matters whether there is cancer in the node at the type of surgery.)
Stage IIIA - Tumor can pretty much be any size, but lymph nodes are clumped together and sticking to other structures.
Stage IIIB - the tumor is any size AND has spread to the chest wall or breast skin AND the cancer has spread to lymph nodes that are clumped together and/or near the breast bone.
Stage IIIC - Cancer has spread to the chest wall and or breast skin AND to lymph nodes above or below the collarbone AND to axillary lymph nodes or lymph nodes near the breast bone.
I don't have detectable metastases, so I'm definitely not stage IV at this point.
(As a side note, my lump is affixed to the skin, but I don't think that necessarily means that the cancer has spread to the skin. But, honestly, I don't know. I'm sure they'll tell me when pathology comes back.)
As far as I'm concerned, knowing the stage is only really useful to lend a certain gravitas to playing the cancer card. I mean, the higher the stage, the greater the power of the card. And even if I was interested in my stage beyond the persuasive power it affords me, it's not really that informative. Sure, there are survival rates associated with each stage, but they aren't very meaningful. I mean, there are a ton of factors which are important for my survival that aren't captured in staging. For example, cancers that are hormone receptor positive are more treatable than those that are receptor negative. My cancer is extremely estrogen responsive (90% of the cancer cells were ER+) and somewhat progesterone receptor positive (10% PR+). That's great because that means my cancer is can be treated through hormonal therapy (i.e., one additional way to kill the cancer), and the hormone therapy should be very effective. The aggressiveness, or grade, of the cancer also matters. I have a grade 2 cancer, which is only moderately aggressive, so I'm in good shape there. My age and generally good health (besides the cancer, of course) means more treatments are available to me, and I can bounce back from treatments more quickly. So, that's good too. Basically, I could look at the prognosis for the different stages, but they would tell me very little about my personal survival outlook.
Another thing worth noting is that (and scientists that are reading this, you may want to look away now), statistics are basically meaningless to me now. I'm young. My family has no history of breast cancer and a relatively low level of overall cancers. I am already an outlier. Not only that, but even among young women with breast cancer, it is very rare for a woman my age to have a grade 2, ER/PR+ cancer. Most young women develop much more aggressive, much less treatable cancers. So even within my outlier status, I'm an outlier. And once you've been one of those one-in-a-million cases, it's hard to look at probabilities the same way again. So, I'm doing to do what my doctors tell me and take the best care of myself that I can, and otherwise I just don't worry about it.
(A little aside regarding cancer statistics: No one really knows how or when they are going to die. I didn't know that before I had cancer, and I don't know it now. So, I don't see much point in worrying whether or not the cancer will kill me. Maybe it will, and maybe it won't, but I could say that every time I get in a car or cross the street. I don't see any point to stressing about dying just because I have one more potential thing that could kill me than other people. I mean, I could have taken up an extreme sport, and it would have been the same thing.)
What to expect from the mastectomy:
Don and I are driving to Hershey tonight, and I have to be in radiology early tomorrow morning. In radiology, they will place a marker in my sentinel lymph node (a special sort of 'master lymph node'). Then, I go into surgery. For a number of reasons, I've decided to have both breasts completely removed at this time. I'll stay in the hospital overnight, and if everything goes well, I'll be released Tuesday morning. I've been told it will take a week or two before I can return to normal activity, and it will be even longer before I can lift anything.
Going forward:
Radiation:
After the mastectomy, I get a few weeks off to recover, then I start radiation and chemo 2 (electric bugaloo). I'll have 33 to 35 radiation treatments. Basically for 8 weeks, I'll go to the hospital (in State College, not Hershey) every weekday, and get beamed with radiation. I also get some tattoos so they know where to beam me.
Chemo 2
Chemo 2 will last for 30 weeks and begins right around when I start radiation. Every 3 weeks, I'll get an infusion of a single drug, Avastin. The side effect profile is supposedly pretty limited, and I had Avastin as part of my earlier chemo cocktails (although it's hard to figure out which side effects were from the Avastin and which were from the other drugs). My hair should stay attached to my head, and I shouldn't have the nausea or fatigue that "real" chemo caused. Also, since it's part of my clinical trial, I can stop if I want.
Hormonal therapy
Hormonal therapy starts after radiation (I think). This just consists of a pill I take every day for 5 years. The pill basically prevents the cancer from absorbing any estrogen or progesterone. It also makes my hormones all wacky, so with any luck, there will be some monumental bitchiness (or at least, I'll be able to blame the pill when I say whatever's on my mind). It has the potential to be pretty great.
Reconstruction
This will happen after I finish Chemo 2 and get around to it. It's just not a high priority right now. However, if you see a great looking pair of breasts on the internet, send them along so I can show them to the plastic surgeon. (DO NOT REALLY DO THIS. That would be weird and creepy.)
Alright, I'm off to pack my bags for the drive to Hershey. I'll try to send a quick update from the hospital once I get out of surgery.
Ninja out.
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