Eff you, cancer!

Hair nearly two years after chemo

2011-09-22T15:09:00.001-07:00

You'd never guess that 2 years ago, I was bald. Except that I won't shut up about how badass I am for having had cancer. (Watchband is the same as last time.)

The reason why I never update anymore

2011-03-30T17:44:00.000-07:00

Cancer is easier than grad school. I thought it when I was first diagnosed. I thought it when I was going through chemo. And now that I'm back in the routine of school, I still think it.

That being said, I really enjoy school. It's just that it's more work than lying around and complaining about chemo or eating fresh cookies at radiation. I have to think smart things and that's hard! All without percocet, too.

One more thing - It's coming up on my anniversary of the end of radiation, which means I will have been cancer-free for a whole year. I'd celebrate, but I'm sure I'll have too much studying to do.

2011-01-10T01:54:00.000-08:00

Will walking around the house topless saying, "I think someone stole my nipples!" ever get old? The answer is clearly no.

In other news, I realized the other day that at some point, my nipples were in the trash. It was probably medical waste or biohazard or something, but tomato tomahto. Isn't that the most profoundly sad thing ever? I'm going to have to punch a kitten or something as a pick-me-up.

2010-11-30T16:50:00.000-08:00

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.

This is really cool

2010-10-18T12:14:00.000-07:00

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)

2010-10-04T14:33:00.000-07:00

In other news, I successfully inhibited the urge to say, "You know, when I was on chemo, I shit blood," to a professor who I caught smoking today.

A post regretting wasted opportunities

2010-10-04T14:19:00.000-07:00

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!

2010-09-24T06:32:00.000-07:00

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.)

ComicCon

2010-08-06T13:43:00.000-07:00

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.)

Avastin, maties!

2010-08-06T13:40:00.000-07:00

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.

A quote I found quite apt

2010-07-29T08:59:00.001-07:00

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

2010-07-22T09:29:00.000-07:00

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?

2010-07-22T09:25:00.000-07:00

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.

2010-07-21T08:53:00.000-07:00

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.

( . ) ( . )

2010-05-25T08:26:00.000-07:00

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

2010-05-25T07:53:00.000-07:00

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

2010-05-20T15:09:00.001-07:00

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.

2010-03-15T16:54:00.000-07:00

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."

2010-03-02T11:28:00.001-08:00

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!

2010-02-25T13:51:00.001-08:00

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

2010-02-23T10:28:00.000-08:00

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.

2010-02-04T16:32:00.001-08:00

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).

2010-02-02T16:55:00.000-08:00

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!

2010-02-02T07:28:00.000-08:00

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?

2010-02-01T12:04:00.000-08:00

Tomorrow is my birthday. I'll be spending it meeting with my new medical oncologist (my regular one is out on maternity leave). FML.

2010-01-27T06:47:00.001-08:00

If I'd known how awesome not having boobs was going to be, I would have gotten a mastectomy at 18 and saved myself all this cancer drama.

2010-01-18T22:56:00.001-08:00

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.

2010-01-11T18:20:00.000-08:00

After trying to get some work on a story done while all hopped up on percocet, all I can say is that I have not been giving William S. Burroughs enough credit. Writing while on opiates is hard work!

2010-01-10T17:07:00.000-08:00

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.)

2010-01-08T19:45:00.000-08:00

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.

2010-01-03T15:56:00.001-08:00

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.

2010-01-01T12:40:00.000-08:00

I can't take ibuprofen or any other NSAID for a week before surgery, which makes this NYE a particularly bad time to reestablish my relationship with tequila.

2009-12-29T09:51:00.000-08:00

Early on in the cancer process, I stopped telling people about my diagnosis face to face. I always wanted to let people know, sort of as background information, so that when I snarked about it or played the cancer card, they'd be in on the joke. But, it turns out that when you say, "I have cancer," people don't treat it like saying, "Oh, I have two dogs," (I do) or "My family is from Spain" (they aren't). Instead, the conversation grinds to a halt and then the person has this moment where they are very clearly trying to decide how to proceed. Then they, assume a very practiced caring expression and say something sympathetic (usually, "How do you feel?" to which I always wanted to respond, "Now? Awkward"). But I never wanted sympathetic. I just wanted to continue on with the conversation, only now having introduced a minor plot point. So, to avoid this awkwardness, I just started telling people over e-mail.

But the point of this post isn't that I no longer tell people about my diagnosis face to face. It's that cancer is this buzzword that signifies TERRIBLE! The word itself carries so much cache. People hear that and it's like you've said "I have the worst thing that can happen to anyone." Like there is nothing worse in the world than cancer. And that's not true. At all.

The fact of the matter is that all sorts of people deal with really terrible things all of the time. They just don't have a nice buzzword associated with them. I have friends who have two preschool aged children that were both diagnosed with a really awful degenerative disease. I have another friend who lost both parents while she was pregnant with her first child. Infertility, divorce, chronic pain, whatever it is, nearly everyone I know has dealt with some sort of catastrophic problem. And the people I know who aren't dealing with huge issues still live difficult stressful lives, with bad bosses and long commutes and cranky kids.

And the point of all of this is that yes, having cancer sucks. It's not like a magical pony ride to cotton candy land. But my life isn't any worse than anyone else's. Bad things happen to people all the time, and this just happens to be the lot I was dealt. And, in many ways, my life could be much, much worse than it is, and I'm really grateful that it isn't. I think Jay-Z put it pretty nicely. Is cancer one of my 99 problems? Yes, but a bitch isn't.

(Oh, and I do listen to things other than rap, but you'd never know it from reading this blog.)

Could have been brain dead in a wheel chair but I'm standing in the booth and the skills are still here (Part 2)

2009-12-21T15:13:00.000-08:00

I don't know if this technically counts as ironic (I always get paranoid I'm going to misuse that term ever since that damn Alanis song), but I gain a lot of comfort from listening to gangsta rap. All of the braggadocio reminds me that I'm a force to be recognized and that cancer is pretty much a punkass bitch in comparison. Lately, I've found this Biggie song to be especially soothing:

(I have so much white guilt, that my stomach felt queasy typing "Niggas" even though I had nothing whatsoever to do with naming the song)

2009-12-19T20:11:00.000-08:00

Grades were posted today. 4.0, bitches! HM=1, Chemobrain=0

(In all fairness, I'm in a Ph.D. program, so it's not hard to get a 4.0. Still, I'll take a little ego boost wherever I can it.)

2009-12-18T09:19:00.003-08:00

I FOUND MY CALCULATOR WATCH!!!

That is all.

2009-12-17T23:41:00.000-08:00

I had an echocardiogram today. The results came back the same as always: black and cold.

Last time I had an echo, a youngish guy tech did it. If you're female and you've never had a guy ultrasound your chest, all I'm going to say is there is a lot of lube and touching of the bathing suit area involved.

This time I had a female, so I was all excited about it. Then, when she asked me to change into the hospital gown (open in the front of course), she said, "You don't mind if I stay in the room to set things up while you change, do you?"

To which I responded:

2009-12-16T10:28:00.000-08:00

I thought I'd be done with most of my chemo side-effects by now, but my hair is falling out like whoa today. I've been writing papers all day, so my laptop keys are all sprinkled with bits of hair. I wonder if my warranty will cover hair in my hard drive if I pull the cancer card?

I got my MRI results back, and I keep meaning to write an update, but these papers (and a story project I've been working on) have been soaking up all of my writing mojo. I'll get to it soon, my pretties, soon!

Spoiler alert: the MRI results were pretty good.

2009-12-09T18:11:00.000-08:00

I just got called out on a message board for being insensitive to cancer when I said that there were a lot of great things about having cancer. The commenter had lost someone close to her to cancer and said my attitude made her want to vomit.

I don't know how to feel about this. I know that my attitude is pretty unconventional. At the same time, I feel like focusing on the good in a situation, especially one that could be as horrible as this one, is a positive thing to do. I guess I don't really see any benefit to taking my disease seriously, but I think there is a lot of benefit to seeing the lighter side of having cancer.

Also, what kind of person rips into someone for being optimistic about cancer? Really?

Edited to add: Apparently it was because I said that I would be sad if/when I was cured, because I wouldn't be able to use the cancer card anymore. I guess I can see how that would be offensive. Still, as a cancer patient, I maintain that I am allowed to joke about cancer as much as I want, and haters to the left. TO THE LEFT!

2009-12-08T15:46:00.001-08:00

No, but like seriously you guys. My mouth really hurts.

2009-12-05T10:56:00.000-08:00

Motherfucking thrush. My last chemo and the thrush is back. FML.

At some point, I want to make a list of all of the little things that I hated about chemo that I never talked about during chemo. Some of them were too embarrassing to admit when they were happening (like pooping blood) and some of them were just too minor to complain about without whining (painful scalp), but, for some reason, I feel like it's important to preserve an accurate record of what chemo was actually like.

2009-12-04T18:44:00.000-08:00

Oh, I totally forgot to mention Halloween (and it's now December, so that's lame, I know).

If I had lost my hair, my costume was going to be....wait for it...A CHIA PET! I was just going to put a mud mask on my scalp and stick alfalfa sprouts to it. I'm pretty sure it would have been the best costume of all time. But, the hair stuck around and I ended up having chemo on 10/30, so I sat around and looked resentfully at the candy on actual Halloween. Still, the costume idea alone is worth some cool points or something.

2009-12-04T18:24:00.000-08:00

So, right after I posted that hair question, I started losing my hair again. I lose a little bit after every cycle, but I lost kind of a lot. I got worried that it was all going to fall out, so I decided to wait until after I finished chemo to dye it. I just finished my last cycle and it's currently thinning a bit, so dying will happen this weekend.

It's getting pretty long though. Check it out!

I have an MRI on Monday and meet with my surgeon on Wednesday, so I should have surgery news coming up soon. I'm so antsy to get this surgery scheduled, I can't even tell you.

Also, I'm so done with having boobs. I was going to buy a ton of new bras at the beginning of the summer before my diagnosis, but bagged that plan as soon as I knew "the girls" were going to have to go. So, I've been stuck with kind of ratty, ugly, poorly fitting bras for a few months now, and I am just over it. Chest of a 12 year old boy? BRING IT!

In other news, I've started to change my eating habits. After I got the diagnosis but before I started chemo, I basically cut all processed food out of my diet and started eating between 8 and 10 servings of fruits and veggies per day. However, during chemo the doctor said to eat whatever I could tolerate. So I did. And I also took that opportunity to eat everything that I had given up and missed (read: Chipotle). Now, super fun food times are over, and I'm back to eating better. It feels good to have the energy and focus to do something good for my health that isn't necessarily medical, and I'm looking forward to feeling the benefits. Since the biggest predictor of getting cancer is having had a cancer diagnosis in the past, I never want to face this diagnosis again and think that I could have done something to prevent it. So, from here on out, I'm Team Eat Healthy. Also, I have a shit ton of candy that I can no longer eat, so if you want me to send you some, holla.

I'll also be Team Exercise soon, but I'm waiting until after surgery to start a truly regimented program.

2009-11-10T13:05:00.000-08:00

Okay juggalos/lettes,

I need some advice. As you are well aware, my hair is growing back in. However, it's growing back in grey, and it's starting to harsh my mellow. I feel like I have enough weird appearance things to deal with and looking older than I'd like is just one more thing than I'd like to handle right now. So, I'm going to dye that grey right out of my hair.

So, do I dye my hair
a) Hot pink - This would be cool. However, I already have a shaved head. Is dying it an "outrageous" color overkill? I mean, the shaved head is punk as fuck already, so maybe pink is just beating a dead horse.

b) Black - This is what I'm leaning towards right now. It would be in keeping with the hardcore shaved head look, but not be particularly startling. Plus, I could hang out with the goth kids and smoke their clove cigarettes (it's not a carcinogen if you're already on chemo) (that was a joke, btw)

c) Platinum - Pro: I can dye it another color if I get bored of it. Con: I could look like that weird fitness instructor from the 80s.

Help me, blogosphere! You're my only hope!

2009-11-09T06:29:00.000-08:00

Ask and you shall receive. It's time for some pictures:

(Actually, first, time for a disclaimer. All of these pictures were taken on my iPhone because I'm way too lazy to be bothered with owning an actual camera. Therefore, I apologize in advance for the picture quality.)

Here is a picture of my left eyebrow.

My left eyebrow is driving me nuts right now, and hopefully you can see why. There are just a handful of actual, normal eyebrow hairs left, but they are all scraggly. I feel like I should be grooming them, but it seems wrong to pull out eyebrow hairs when I have so few left. Plus, they will fall out on their own. If you look closely, you can also see that some baby eyebrow hairs are growing back in. Am I supposed to be grooming those? For some reason, plucking my baby eyebrow hairs while my normal eyebrow hairs abandon me makes me irrational angry. I should either be mourning the loss of one, or battling the regrowth of the other. Not both. Seriously, Cancer, throw me a bone, here.

Also, can you see how thick and lush my hair regrowth is? It's still mostly white, which makes me feel like a post-menopausal woman (which, I guess, technically I am now, but you know what I mean), but it's really coming back. I think I'm going to dye it fire engine red or something.

Here is my right eyebrow. You can see how sparse the actual brows look. If I try to draw them in, it looks like the kind of pencil you see on 70 year old ladies, surrounded by some actual hair. It's really funny looking. You can also see the total lack of bottom eyelashes on my right eye.

Another eyebrow pic, but check out my upper eyelashes, too. They look funny, like gapped teeth.

My actual teeth aren't gapped, but are Cullenesque (or whatever vampire reference you prefer). This is a result of trying to floss and is a side effect of one of the clinical trial drugs I'm on, Avastin. Avastin makes tissues more likely to bleed, and chemo in general drops my platelet count, so I don't clot so well. As a result, my gums bleed freely. I like to pretend I'm in Fight Club when this happens.

And to end, here is a picture I took of myself at the hair salon back when I still had hair! (Also, check out my awesome calculator watch, which I've managed to lose in the past 2 weeks. WHERE ARE YOU, AWESOME CALCULATOR WATCH? I MISS YOU!!!)

2009-11-07T08:05:00.000-08:00

Here are 3 things I did today:
1) Shaved my legs
2) Penciled in my eyebrows
3) Plucked an errant beard hair (c'mon girls, you know you have them too)

At most, I should be doing two of these things. How is this fair?

Lower eyelash count is holding steady at 2.

2009-11-06T09:47:00.003-08:00

I have been hacking away at an update for like a week, and honestly, I've got nothing. Part of it is that my mom said that if you don't have anything nice to say, you shouldn't say anything at all (actually, my mom never said that, but I've heard that it's the kind of things moms say), and this cycle has been a complete and utter bitch. Another part of it is that they gave me a Neulasta shot which made my bones hurt which made me need vicodin which makes me way more interested in drooling than writing. But, at any rate, I'm still around. I'm tired and run down and nauseous and my bones hurt, but otherwise, I'm still the same snarky, irreverant cancer patient as always.

I did, however, want to discuss PICC lines a little bit. If anyone ever suggests that you get a PICC line (like a port, but for your arm), punch them in the face. Twice. Because they will shove a plastic tube up your arm veins while you are completely awake, and that's not okay. I felt violated and had to call a Take Back Our Veins hotline afterwards. It's pretty amazing that I didn't become a militant lesbian after the experience. (That being said, I do have perfect militant lesbian hair, right now, and I'm kind of sad it's being wasted on me.)

Also, I only have one more chemo left. FUCK! YEAH! (Sorry, Grandpa) I went through this period where I was sad that chemo was ending. It's like I felt like I hadn't been appreciating my chemo experience enough or being "present" through it. Then I realize that's what normal people call coping, and stopping to smell the chemo roses is what crazy people do. And while I'm crazy, it's only like a fox. So, now I'm super excited to be almost done with chemo. Go me!!

And finally, although my head hair seems to be coming in nicely, I have almost completely lost my eyelashes and brows. While I'm "whatever" about the lashes, I'm a little sad about my eyebrows. How will people be able to intuit subtle changes in my emotions if I don't have eyebrows? I tried to draw them on this morning, and it was so lulzy, I indulged in a nice round of self-mocking. So, if you're having trouble telling what emotion I'm trying to convey (hint: it's probably either irritation or snark), I'll understand.

2009-10-27T16:52:00.000-07:00

I got out of the hospital yesterday, but spent all day there today getting a PICC line put in (like a port for my arm). I'll write a longer update later, but I just want to say that they did not give me enough drugs for the venal rape that I went through. Not enough drugs at all.

2009-10-26T04:26:00.000-07:00

I'm supposed to get out of here today, which is good because shit is getting weird. In addition to the moaner, we now also have a random yeller. It's like a regular Halloween extravaganza around here.

Edited to add: My oncologist just walked in to tell me that he's running a little behind because someone is having a "hair emergency." I don't even know where to begin with that.

2009-10-23T09:42:00.000-07:00

New update: I will be leaving the hospital early next week (probably Monday). They want me on round the clock IV antibiotics for a full week before letting me go. My blood cultures are looking good, though.

As I understand it, my chemo would be pushed back a week from my vacating the hospital. I'm not sure what this means in terms of my final chemo, but, you know what? I'm not even going to worry my pretty little head about it. It'll happen when it happens.

In other news, I have 9 remaining lower eyelashes. Total.

2009-10-21T19:32:00.000-07:00

I'm on a fair amount of opiates (read: vicodin AND morphine) as I write this, so please excuse any typos, grammar errors or nonsensical ramblings.

So, as some of you may have heard, I've been spending my days in the hospital. The short story is that I woke up feeling fluish on Sunday, and after a short nap, my temperature reached an upsetting 104.5. Any time my fever goes above 100.5, I'm supposed to rush straight to the ER, so that's what I did. Turns out I have a staph infection in my blood. (Astute readers will remember that, along with with shingles and cancer, staph infections are one of my biggest medical fears. Go me for conquering them all in one fell swoop). I'm currently on round the clock IV antibiotics and they are doing all sorts of heart tests to make sure that the infection doesn't settle in my heart valves (which are currently fine). I also had to have my port removed today, since that can harbor bacteria.

I'm feeling better every day, and my fever has been gone for most of the day. So that's good. I've been having this weird, severe chest pain that doesn't seem heart related and isn't abating either. So that's, I don't know, neutral to bad. I'll be in the hospital at least one more day, though, and possibly more, depending on the results of my labs. My chemo, which should have been today, is tentatively scheduled for Friday, but I'm not sure if I'll make that. Regardless, I'll probably end up going pretty much straight from the hospital to chemo. Fun!

Oh, also, my next door neighbor in the hospital is a nighttime moaner. It's awkward.

But how will I ever meet Snoop if I don't have boobs?

2009-10-15T19:02:00.000-07:00

So, chemo related news: First off, I'd like to give a shout out to AC. By shout out, I mean, I HATE YOU, AC. Do you remember the salad days of docetaxel, back when chemo was fun? Man, those some good times. Now, I'm all nauseous and exhausted and generally under the weather. AC, you can go f- yourself. (Just kidding, AC, please keep curing my cancer.)

Also - quick rant - I am so sick of trying to fit three weeks of life into one week of feeling good. Do you have any idea how hard it is to do 3 weeks of stuff in one week? It's really hard! No like, seriously hard. Pity me.

But really, I know that you aren't really hear to listen to me bitch about chemo (I mean, come on, that's been done to death). You want to hear all about the boobs!

I want to start by explaining a something about mastectomies that many people don't realize. When you get a mastectomy, they take your nipples. Repeat: you no longer have nipples. If you get breast reconstruction, you either need to get prosthetic nipples, or you get a little pucker sown into your new boobs and then get an areola tattoo. Isn't that weird? No, I understand. It's okay to take a moment and get weirded out by that. So, when I talk about how I'm going to miss my real boobs, what I really mean is that I'm going to miss having nipples. I feel that it is mourning the upcoming loss of nipples is a valid, normal thing to go through, and so I'm doing it. However, as saying "nipple" is funny, and nipples, in general, are pretty much a comedy gold mine, please feel free to mock my nipple-less existence. I understand that sometimes, we just do things for the lulz, and I'm honored to be a part of that.

So, on to reconstruction. First, the bad news: Even though I have put on 9 pounds since starting chemo, I do not have enough tummy fat to make new breasts. I don't even have enough butt fat to make new breasts. This means, I get neither an incidental tummy tuck nor an incidental butt lift. It's at times like these that I feel like cancer and I have an unbalanced relationship. I mean, I've given up a lot for cancer. My hair, 9 pounds, flossing, etc. And does cancer have the decency to give me a great butt or a washboard stomach? No! Cancer is such a dick. (Also, I asked how much weight I'd need to gain in order to make breasts. Answer: 50 pounds!)

Since I can't make breasts with my own fat, do I get to have awesome implants? Um, kind of. I don't just get implants because I need radiation. According to my doctor, who, incidentally, looks a lot like the DJ from Northern Exposure, radiation makes your chest muscle "woody" and it doesn't hold implants well. Instead, I get what is known as a "lat dorsi." There, they take the latissimus dorsi muscles from my back and form them into little hammocks which will support implants. It's like all the pain of the autologous tissue surgeries with all of the annoyance of having implants! Whatever, though. I am having elaborate fantasies about all of the cute tops I'll be able to wear once I don't have to worry about industrial strength support undergarments, and that soothes the pain right away.

Another note, (so you aren't surprised if you see me): Because I need radiation, I won't get immediate reconstruction. I'll have a good 10 months or so between mastectomy and reconstruction at which point I'll have the chest of a young, nippleless boy. I don't think I need to remind you that this is fraught with potential comedy, and I hope to exploit it whenever possible.

I've gotten several recurring questions from people about different mastectomy stuff. Let me just say, the answer to all of the questions is pretty much, "No, I need radiation." So, if you have a question that can possibly be answered by "No, I need radiation," I can practically guarantee that's the answer. However, keep them coming, and at some point, I'll create an FAQ.

And before I sign off, a humorous anecdote: My friend Mickey was talking to a book publisher (is that right, Mickey?) about how I write quirky little bits about having cancer, and the book publisher told him that the funny cancer market is flooded right now. Isn't that lulzy? A) There is a funny cancer market and B) it's already saturated. If I'd been serious about a publishing career, I really should have gotten my cancer sooner. I'm not concerned, though, because it's really my soon to be completed young adult novel that will take the publishing world by storm.

Also, Denzel Washington's personal driver paid for my dinner tonight. True story. (No, this really is a true story.)

Over and out,
Titsy McGee

They say I could have been brain dead in a wheelchair, but I'm standing in the booth and the skills are still here

2009-10-11T13:14:00.000-07:00

Now that my hair is growing back and doesn't seem to be going anywhere, I thought I'd chronical my hair through chemo.

First up, some examples of my pre-chemo hair:

I'm the one sitting on the couch on the right. Doesn't my hair look curly and shiny here?

And here my hair is looking particularly cute during a night of roller skating:

Again, I'm on the right here. God, hair, you are so cute and perky here. It's like you knew that disco skate night was the night to rock out.

And then I started chemo, and, after 15 days, the hair started to fall out, as exemplified here:

Ew. Having your hair fall out in chunks like that is pretty unnerving. Like a horror movie or something. So, we cut my hair quite short.

We listened to Girl Talk and I sang and danced a lot.

The cat judged. (BTW, we are in the process of renovating the bathroom, so it looks pretty depressing in these pictures.)

Here I am, still dancing around with the finished product.

So, the short hair lasted roughly twelve hours before I started going bald right in the front. After about 3 days, my hair had finished falling out, and I looked like this:

This picture looks like a Glamour Shot, right? It's only because Don is like 12 feet tall. Also, don't I look like a little baby bird here? We referred to my hair during this period as my "pricklesoft," as it was both prickly and soft. Bet you couldn't have guessed that on your own.

At the end of every cycle, I'd lose a bit more hair and it seemed like any remaining hair was white. Here I am, at last docetaxel infusion looking especially bald.

I'm trying to look punkrock in this pic, and if you look really closely, you can see my chemohawk. You can also see some of the changes in my weight and skin texture in this picture.

By the time I started my first round of AC, my hair had started to grow back. Initially, it was just those little white strands. (It's really common for hair to grow back white at first.) However, I'm starting to get a nice layer of regular colored hair. When I shaved my head this morning, the clippings were pretty prototypically salt and pepper. So, here is my current hair, on day 10 after my 2nd AC cycle (6th total cycle).

And a little more hair-centric:

It's comparatively lush, right? And I can't call it a pricklesoft anymore, because it's just soft. I'm pretty curious to see if it keeps growing back, or if my awesome Halloween costume will be realized. I'm sure that I'll post more pics either way.

And to end, here is a cute picture of Cancer Puppy (also known as Beulah):

2009-10-09T15:08:00.000-07:00

It's Jay-Z night, my hair re-growth looks punk rock, and part of the money I'm going to spend on that amazing pink plaid miniskirt goes back to benefit me. Me! Who gives a fuck about cancer when life is this kickass?

2009-10-06T09:06:00.000-07:00

Before chemo, I was clearly taking my awesome brain for granted. I believe my feelings towards cognition function are best summed up by Cindarella's 1988 power ballad, "Don't Know What You've Got Til It's Gone."

2009-10-03T16:43:00.000-07:00

I just rubbed my eyes and lost a bunch of eyelashes. Why are my eyelashes falling out and while my head hair remains attached? I believe this is what is colloquially known as complete bullshit.

2009-10-01T12:54:00.000-07:00

Just a quick housekeeping note: As we begin Breast Cancer Awareness month, I'd like to remind you that sometimes the most effective way to support the fight against cancer is a direct donation to a patient. Just saying.

So, chemo news: Man, Week 1 of my new regimen is so craptastic compared to my old regimen. Week 2 was better, so I guess it all comes out in the wash, but did I mention Week 1 is lame? Who would have ever thought that going through chemo would be kind of a bummer? I did lose one of those extraneous pounds I gained on the old regimen, though. Thanks, nausea!

I also only have two more infusions left before surgery, meaning I'm almost done with chemo. It sounds strange, but in some ways, I'll kind of miss it. I like only needing 15 minutes in the morning to shower and get ready. I like the drive to Hershey and watching trashy TV in the infusion room. In some ways, I even enjoy being so dumb afterward that the only things I'm capable of doing are watching DVDs and reading the Internet. I also like all of the nurses and staff in the infusion center. I guess all bittersweet things must come to an end.

Tumor news: My doctor could barely find my tumor, and said there is a chance that the mass we're currently feeling may just be left over scar tissue. This doesn't change my course of treatment at all, but it reminded me of the picture attached to this update. (Note: if you ever find yourself having cancer and not wanting to let it get you down, Courage Wolf is often a good pick me up.)

Side effect news: You may remember from my last update that my hair has been growing back ever since my last docetaxel treatment. It's still there and it's still growing. The doctor promised me it would fall out with my last AC cycle, and it's definitely starting to a little bit. However, my Halloween costume depends on me being mostly bald, and I'm going to be so annoyed if my hair stays attached. I realize that I still have a month until Halloween, and my chemo nurse said that it sometimes takes two AC cycles to see real hair loss. All I know is that if I miss out on an awesome Halloween opportunity because new chemo failed to make me bald, I'm going to be pissed. I might even write another one of those F you, Cancer updates.

(Some people have asked why I don't just shave my head for Halloween. I feel like there is something fundamentally wrong about shaving new hair growth after chemo. That's akin to killing kittens or drinking baby blood. The hair has to go on its own, or I'll just be G.I. Jane for Halloween, a far inferior costume, I might add.)

I have an appointment in Plastics (doesn't that sound badass?) on Monday to discuss breast reconstruction, which has made me think quite about about my upcoming mastectomies. I don't know quite how to explain how weird this feels, and I can't really think of either a unisex or male equivalent of a mastectomy to put it into perspective. At any rate, it's going to be weird, weirder than losing my hair, I think, and although I generally conceptualize the mastectomies as battle scars in my epic war against cancer, I still feel unsettled when I see Girls Gone Wild commercials late at night (don't even act like you don't see them when you have insomnia and end up watching reruns at 3 am).

And finally, I managed to score some Jay-Z tickets, so that crisis has been averted!

2009-09-28T08:51:00.000-07:00

Given the events of the past week, I'm pretty sure that I'm controlling celebrity gossip with my mind. This leads to two questions. 1) Is this a common side effect of AC chemo, and 2) Any requests?

2009-09-21T06:50:00.000-07:00

This weekend, I met a guy at a party, and we bonded our mutual love of gay synth pop. It quickly turned into a discussion of whether we preferred goth or industrial music in high school. I revealed that I definitely listened to a lot more industrial, to which he responded, "I figured that, given your haircut."

Yes, that's right, kids. My hair has grown back in to the point that it can now be mistaken for a fashion choice. WIN! (Of course, it will all fall out this week, but I'm enjoying it while it lasts.)

In other news, I think I'm getting a cold. This should be interesting.

2009-09-15T06:58:00.000-07:00

I found these awesome shoes that I really want, but I can only find them in Mens sizes.

Ironically, the proceeds go to fight breast cancer in underprivileged women. WTF?

2009-09-15T06:41:00.000-07:00

I wrote this update yesterday morning but got distracted and didn't post it. Since the writing, I managed to read 3 journal articles, go to a meeting and out to dinner (and eat a burrito, the most delicious of all possible non-candy foods), and generally function like a fairly normal human being. Go Team Me!

(Begin Monday's update) Sum total of the tasks I have accomplished in the past 15 hours: boil pasta, load the dishwasher, take the dogs out.

Sum total of the tasks I have accomplished in the past 6 days: same as above. Looks like the metaphorical grey skies are starting to clear up.

Other awesome things about today:
1) I've been awake for 3 hours and haven't been compelled to nap.
2) I managed to take my meds (nausea was keeping me from taking them earlier in the week).
3) I took a shower instead of a bath (which is the shower for people too nauseous to stand up for 10 minutes).
4) I drank some caffeine.

I worry, sometimes, when I write updates like this, it sounds like I'm saying, "Poor me. My life is so hard that I can't even do normal things like load the dishwasher," but this isn't at all what I'm trying to imply. I feel more like, "Life is amazing and just getting better! Look at all of this stuff that I managed to do today that I couldn't do yesterday! I'm a champion!" It also imbues all of these normal, dreary tasks with a sense of drama and challenge. So, instead of having to load the dishwasher as a normal chore, now when I load the dishwasher, it's this awesome thing that I managed to accomplish. It makes my life seem full of little victories all of the time. It's really neat in a way.

News about this cycle so far. Well, clearly, the first 6 days pretty much kicked me to the curb. Apparently, nausea is worse for women, people under 50, and people prone to motion sickness. So basically, me. I pretty much couldn't get off the couch at all because standing for more than a few seconds made me retch.

Besides the nausea, I haven't had a lot of other symptoms. I've been really dizzy, but I suspect that's because I haven't been taking my Effexor. Apparently, dizziness is a withdrawal symptom. My nose is still intermittently bloody and kind of painful, but that's because I'm still getting the Avastin. My fingernails hurt (I know, right?). And, of course, fatigue continues to hang around.

One weird thing, that may be a result of the Effexor withdrawal or not taking my Ritalin, is that grammar seems really screwy. I've been having some problems finding my words since I started chemo, but now, I'm having difficulty figuring out how how words fit together. It's not terrible when I read, although I do notice it, but I feel like my writing is particularly scrambled. Isn't that an odd side effect? I would probably make an interesting subject for a psycholinguistics study right now. Also, if this update makes no sense, that's why.

(Aside: As someone who is interested in cognition and learning, this whole chemo brain phenomena has been really fascinating. It's been especially interesting to experience this in an academic context. At some point, when my grammar gets back on track, I'd like to write a little essay about it.)

And in other news, my hair has started to grow back. My doctor assures me that it will fall out again within the next week or so, but it's really super soft right now. On the one hand, I'm reassured that it will grow back after chemo is over. On the other, I have no idea what I did with my razor.

Okay - Back to Tuesday again - Jay-Z, who NPR listeners will recognize as the United States of the rap game, is coming to State College, but tickets are sold out. As many of you know, I'm a pretty big Jay-Z fan, so I'm currently soliciting ways to use the cancer card to finagle tickets. Do I contact Jay Z's people with a sob story about how I was so sick with chemo that I couldn't get them or do I cry to the school? Please send me your ideas.

Yours truly,
The Liechtenstein of the rap game

AC (Slater)

2009-09-09T08:54:00.000-07:00

Another 2 updates in 2 days? What have you done to deserve this? Probably something quite bad.

Things I've learned since my last update.
1) My new chemo regimen is referred to as AC in cancer circles (As you know, I didn't just learn this, but I'm providing exposition). It's a drug combination which consists of something that starts with an A, which looks like red Kool-Aid that they inject with a syringe (i.e., not an IV, so I get to sit awkwardly while the nurse pushes the drug and try not to make creepy eye contact) into my port, and Cytoxan, which looks normal but has a particularly distressing name. This regimen was developed in like the 1930s (the nurse told me the exact date, but I mostly retained that it was old).

1.1) I like to envision people wearing fedoras and drinking martinis while listening to Glen Miller and Tommy Dorsey and getting their infusions, because apparently the 1930s through the early 1960s are pretty much the same to me.

1.2) Because of the change in drugs, I will not be getting Neupogen (which we knew) or Neulasta (which we didn't know). That means that during this first cycle in particular, I'll have no additional immune support and will be especially susceptible to infection. If you see me around and happen to be sick, please avoid me. I won't take it personally. I promise.

2) The Cytoxan is excreted through the urine in little grains, so if I don't drink enough water, I could pee sludge. Take the nausea you just experienced reading that sentence and multiply it times like a billion or so, and you'll have an idea of my current nausea. This is the definitely the more classic chemo experience (which makes sense given that the drugs essentially exist in a Raymond Chandler novel in my imagination), and I feel much more classically sick. I, however, am not feeling the same nerve pain, fatigue, or brain dysfunction that I usually feel on Day 1, though, so that's something. Plus, maybe the nausea will help me lose the 9 pounds I've gained since starting chemo.

2.1) If I may rant, WTF, Cancer? Chemo is supposed to leave me svelte and ready for the recently passed bathing suit season. I was expecting to not have to work to lose my wedding weight and now I have extra to lose? Why didn't I get the kind of cancer which makes the brochure on cancer nutrition ask, and I'm not making this up, "Have you considered adding whipped cream? " Yes, I have considered whipped cream, but now I'm stuck considering broccoli. I was robbed. Uncool, Cancer, uncool.

2.2) Lying on the couch complaining that you're dying is super fun when you have a cold, but it really loses something when you're feeling sick because you are actually fighting a deadly illness. It also kind of kills the joy of talking about how awesome my goth-themed funeral would be. Cancer, you ruin everything.

2.2.1) Please note: The awesome goth funeral does not depend on cause of death. I'm only talking about it less, because it's kind of morbid now. Also, if I do die of cancer or anything else, please make sure that my coffin has a giant sticker that says "NINJA DOWN" on it.

3) In order to soothe the sting of not being able to complain as much as I'd like while feeling sick, I've decided to be "strong." Actually being strong requires me to triumph in the face of adversity with little complaint. Being "strong" requires me to point out how strong I'm being when I do stuff like make a bowl of cereal. God help you all when I go to class tomorrow and take a quiz. That's like the "strongest" thing anyone with cancer has ever done. I'm like a regular freaking Lance Armstrong over here (with less juicing...sorry, I couldn't help it). I'm also going to get one of those yellow bracelets to point out how strong I'm living. (Is it bad karma to wear those ironically?)

4) Speaking of things that are fun for me and annoying for everyone else (i.e., everything I love), my friend Mike Batz made me these absolutely AMAZING actual cancer cards. They are seriously not to be believed in either their sheer awesomicity, creativity, or humor. Remind me to show them to you next time I see you. You won't regret it.

5) I will probably lose my remaining hair (referred to by my father as "a downy covering," referred to as me as a "badass chemohawk," and referred to by my friend Brendan, who is my new best friend ever, as "hot"). I really, really, really hope this happens on a weekday, because last time it was fascinating to watch. I'd love to be able to share it with friends and colleagues.

6) Since I've spent a good bit of this update talking about the negatives of cancer, I would like to point out a positive. It's allowed me to blur the line between the personal and professional, and develop personal relationships with people that would have otherwise been strictly professional. It has long been my belief that professional productivity and overall corporate culture is enhanced when co-workers view each other as friends and people, and I'm really thankful that I've gotten to see that side of people and share those sides of myself. Plus, it's been just wonderful to get to see how loving and supportive the people I work with are. I never expected anything less, but I've just been overwhelmed. (I've been overwhelmed by this in general and feel constantly blessed, but the professional support has made this whole adventure so much easier than it could have been otherwise.)

7) Shout out to my cousin Thistle who ran a race for me! You rule, This!

Okay, I'll shut up now. I fail to see how I can be so verbose in these updates and yet struggle to make length on every paper I've ever written. I fear that it may be that I love to talk about myself more than anything else, but let's just keep that between us.

2009-09-08T04:20:00.000-07:00

So, I've rewritten this update like 3 times because it's kind of boring, but somehow I feel like you'll manage to slog through it. I guess sometimes cancer is just boring.

Time for the end of cycle update. I don't have too much to say about this cycle, so maybe somehow I'll manage to refrain from turning this into a novel. But, before we get into a discussion about chemo, I have two pieces of important news.

1) Both my medical oncologist and my surgical oncologist agree that my cancer has gone down a stage. While clinical staging studies can't be completed until after my surgery, at diagnosis I was somewhere in the Stage III range (there are 3 types of stage 3, and I was either B or C). Now, both doctors think I'm Stage II. The 5 year survival rate for people with Stage IIIC breast cancer is 54%. It's 86% for people with Stage II breast cancer. So, IN YOUR FACE, DEATH!

2) I finally got a cancer puppy! Don and I have been talking about getting a second dog since we decided to move to State College, but neither of us had the time to invest in a new dog. However, since I'm spending a lot more time at home and we have 3 people on deck, we decided the time was right. Also, the cancer card may have been played. At any rate, our puppy is a black lab/golden retriever mix named Beulah, and I'm completely head over heels in love.

So, chemo news. Much like last cycle, the overt side effects, such as mouth and nose sores, have been pretty mild. I've still been having some nosebleeds, but they haven't been too bad. I did get a pretty awesome gusher in the first meeting of my Neuroscience and Memory class, but it stopped pretty quickly, leaving a giant bloodstain on my pants as the only reminder. I also got to say, "Sorry to inconvenience you by getting cancer," which brightened my day.

However, less obvious side effects, like fatigue, have been worse. At my chemo appointment, I managed to convince my oncologist to prescribe low dose ritalin, as it's been shown to help with chemo brain and fatigue in some small sample studies. (Note: I feel my doctors both love and hate having a patient that reads the scientific literature.) I figured it might help, and if it didn't I could make a quick buck selling it to undergrads (this is a joke). It's actually been fairly effective, so I won't be able to buy that timeshare in Colombia quite yet.

One of the weird things about chemo is that it kind of changes assumptions I've had about the way my body functions. This has been particularly evident with the fatigue. For example, I've always been a terrible napper. Usually, I can't fall asleep during the day, and if I do, I can only sleep for 20 minutes or so. I also am typically incapable of sleeping in, so regardless of when I go to bed, I nearly always wake up around 7:30. However, since I started chemo, I'll lie down for a nap, thinking I'll get up in half an hour, and wake up 2 to 3 hours later. Also, for the first time in my life, I've been oversleeping. This sort of thing has been happening with food as well. Chemo increases your metabolic rate, but it changes over the course of the cycle. It also changes the hunger signals. As an adult, I've pretty much always had the same "food budget" (i.e., the number of calories I can eat to maintain my weight), and now I'm never quite sure how to manage my food intake. It's an odd feeling to have all of these changes, and I feel like I need to watch some of those "My body is changing" videos from middle school health class.

Speaking of body changes, I met with the surgical oncologist, and we've decided to go with a bilateral radical mastectomy. It's going to be radical! I'll probably have surgery in late December or early January, followed by 10 more chemo cycles (I only get these b/c of the clinical trial) that will run concurrent with radiation. Then I get another reconstruction surgery (most likely) and later a revision surgery (also most likely). After that, it's 5 to 7 years of hormone therapy and then I'm done!

Okay, I'm off to the hospital for my infusion. I get different drugs this time, so it will be a new adventure. Yay!

2009-08-17T21:21:00.000-07:00

It's Chemo Eve again, and as I prepare for chemo day (by taking steroids), I am compelled to pause and reflect on the ups and downs of chemos passed and consider resolutions for the chemo to come. (This is a lie. This update follows much the same format as the others, with little to no actual insight into chemos past and future.)

This upcoming chemo is the last of the docetaxel/xeloda/avastin chemos, before I begin the AC chemos. This makes it the halfway point of my chemo treatment. You may remember from past updates, that xeloda is a pill that I take for 14 days following my (fragrant, refreshing) infusion. For those of you who have never had chemo (hopefully most of you), swallowing the chemo pill is a much different experience than swallowing a normal pill. For starters, it comes in a bottle that has giant yellow stickers that say "HAZARDOUS DRUG" all over it that make it hard to forget that it's essentially poison. Also, unlike other drugs, which are nearly always designed to make you feel better, you know that taking your chemo pill is just going to make you feel craptastic. Psychologists will enjoy thinking about all of the aversive training that I must ignore just to choke down the pill. So, after today that will be done, and I'm pretty excited about that.

I also believe that I will be able to switch from the neupogen shot to the neulasta shot. As I've complained about in some detail, I have to go to the hospital to get a neupogen shot every day for seven days after each infusion. It's a pain and the hospital never has current issues of People (although it did have a brochure about sexuality and chemotherapy that suggested trying leather play. WTF, brochure?). I only get the neulasta shot once, and although the bone pain is supposed to be worse, it will be mitigated by not having to read a 2 month old tribute to Michael Jackson (may he rest in peace).

In other chemo related news, astute readers will remember that I (love the phrase "astute readers" and) recently mentioned that this cycle has been both the easiest and the hardest. It's been hard because the fatigue and chemo brain have been a disaster lately. My cognitive function is so messed up that I argued at length about Michael Vick on an Internet forum. Even my cat (the dumb one) knows better than to argue with Internet goons. Only stupid people without the sense that God gave a banana debate on the Internet, and yet, here I am, an over educated Ph.D. student, making a rookie mistake. What's wrong with me? (Oh yeah, cancer.) Hopefully, my doctor will recognize this as the colossal problem that it is and suggest a medical therapy (there is some evidence that ADD/ADHD drugs provide relief since the main symptoms of chemo brain are difficulty focusing and mental fatigue, both of which are common symptoms of ADD/ADHD).

On the flip side, this cycle has been great because, despite the nosebleed I fondly refer to as Old Faithful, I didn't have a lot of gross side effects. My mouth stayed healthy, and my nose seemed to move straight past sores and right on to bleeding (which, honestly, I prefer). The nausea was well controlled with my anti-nausea meds, because apparently, it helps if you take it before the nausea kicks in. Who knew? It's like all of the normal painful side effects were combined into 3 hours of utter annoyance. Again, I think I prefer that. Plus, I get to use a lot of expletives in my update e-mail, and cursing is one of my favorite hobbies (sorry, Mom and Dad).

I also wanted to mention that tomorrow I'm eating lunch with Bird (shout out!), the med student who sat with me while I waited to get my biopsies and then got said biopsies after the doctor told me I probably had cancer. I hadn't brought anyone to the appointment, because I'd been told previously that the lump was nothing and I didn't want to make a big deal of it. Even though, as a grad student, I can appreciate how precious time can be for a med student, she did a wonderful, humanitarian thing. It's the kind of thing that makes you glad that someone is becoming a doctor, and I think any one of you would be blessed to be in her care. She is also super, duper cool, and I can't wait to see her!

And finally, I can't even begin to describe how excited I am that school is starting up again. I'm looking forward to having some structure back in my life. I've been noticeably absent from the monkey lab much of the time, because I get pretty anxious about not having my wits about me when working with captive animals that have opposable thumbs and are about a billion times more agile than I am. So, the prospect of intellectual stimulation in a structured environment with all of my friends that involves sitting down, talking, and very few scenarios in which monkeys could die rules my world right now. I imagine professors are less thrilled about a bald girl nearly giving herself a hernia trying to form a coherent thought, but I'm sure we'll all manage somehow.

And one last finally. I've gotten a lot of comments about the nature of my outlook on this whole cancer thing. After I was diagnosed, I did a fair amount of soul searching and came to some explicit conclusions and decisions about how I was going to look at this life event (one of which was to think of it as an adventure). Is this something that people would be interested in reading or is it strictly masturbatory? My feelings won't be hurt if you say the latter.

How do these updates always end up so epic? Post-chemo update and a picture of my chemo outfit to follow at some point. Also, check out my awesome chemohawk, the most subtle (subtlest? I don't know. DAMN YOU CHEMO BRAIN!) of the rebellious hairstyles.

2009-08-15T08:53:00.000-07:00

For those of you who are here from ONTD, the comments that I got on yesterday's FFAF post were so touching and kind that I've been getting misty all day thinking about them. You made a girl with cancer cry. I hope you're happy! (srsly u guise, I'm all warm and fuzzy from all of the support and when the Make A Wish Foundation realizes that its policies are ageist and they grant my wish of RPattz in my pants, I will make him hold up the biggest, sparkliest I <3 ONTD sign ever. I will also make him hold up a sign that says "Twilight, I did it for the lulz.")

For those of you who don't read ONTD, it is, without question, the best thing on the Internet. And no, I'm not forgetting about Snacks and Shit.

2009-08-14T09:59:00.000-07:00

I've taken to not wearing a hat any time I'm indoors. It's more comfortable that way, and I also think it's more obvious that I've got cancer. The hats kind of have this, "She looks like she might have cancer, but I'm not quite sure," vibe. The bald head says, "Yeah. I have cancer. What of it?"

Today, I was walking down the hall by the lab, and this creepy old guy who likes to recite scripture ad nauseum points to my head and says, "Bald is beautiful, or at least that's what the bumper sticker tells me."

Well, you know what creepy old guy, I'm fucking beautiful now and I was fucking beautiful with hair. I don't need your patronizing, backhanded compliment to know I'm hot. Cancer does not change the fact that I'm beautiful and awesome and badass. It only changes the fact that douches like you feel the need to comment on it. Go DIA(hell)F.

In other news, I saw a shirt at Spencer's that said "Lost the hair, kept the big dick." That shirt and I need to be together.

2009-08-11T12:14:00.001-07:00

You know, I've been waiting to use that Christian Bale freakout line (does everyone call it the Bale Out, or is that just an ONTD thing?) in real life for months. So, I guess I can thank cancer for that.

Just a few words about my friend, Cancer

2009-08-10T16:13:00.001-07:00

Cancer wears a hemp necklace and a white baseball cap. Cancer's favorite band is Staind, but Cancer puts on John Mayer when he's feeling sexy. Cancer waxes his eyebrows and shaves his chest. It makes the Axe bodyspray stay on longer (Cancer likes the chocolate scent). Cancer drives a Toyota Celica but really wants a Jeep Wrangler. Cancer's favorite movie is Van Wilder and his favorite TV Show is American Dad. Cancer takes his dates out to Olive Garden, Outback if she's really special (where they split the chocolate thunder from down under). Cancer wishes Abercrombie stocked Ed Hardy t-shirts. Cancer thinks he can play guitar, but can only play Redemption Song. Cancer's favorite Red Hot Chili Pepper's song is Under the Bridge and thinks Anthony Kiedis has a killer bod.

2009-08-10T11:15:00.001-07:00

I started writing an update on Saturday in which I rambled on about all of the cool things about having cancer and all of the other blessings in my life and then maybe some other things that kind of annoyed me about having cancer. Well, I've scrapped that update. Now you get this one. And let me just start out by saying, this isn't going to be one of those "ha ha! Cancer is the best" updates or even one of those "look at that crazy thing cancer did to me" updates. Instead, this is going to be a bitchy, cranky, salty (I drop the F bomb a lot, consider the cancer card pulled) update about how I'm over this whole having cancer thing. Put your reading glasses on now, because it's going to be a doozy.

I'll start by telling you something awesome about my dad. In addition to being a former beer columnist and a longtime soccer player, my dad has played bass guitar in some band or other since long before I was born. Occasionally, he gets the band he played with in college, Waterfall, back together. They play pretty much the same set list they played at William and Mary in the 60s (read: lots of classic rock), and it's as rockin' and fantastic and tie-dyed as you're imagining.

Well, Waterfall played yesterday at the Watermelon Festival in Richmond, and I was supposed to go with Cassie to see them. But, when I woke up on Saturday morning, I felt like I might be getting a little sick. Did I actually feel sick? No. I just felt like I might potentially get sick. And that was enough to make me not go and risk my favorite daughter status (which I must say is a result of my current health condition). Before cancer, if I got sick in Richmond, I slept a little more and maybe took some Sudafed, and got over it. Now, if I get sick, I have to go to the hospital to get IV drugs, and while I'm sure the hospital in Richmond has the same trashy TV shows as the hospitals here, I'd rather be hospitalized near home. So, F.U. cancer #1: Fuck you cancer, for making my immune system so shitty that I skipped my dad's awesome band gig, because I thought there was a slight chance I'd get sick. Note: I never actually got sick.

Cassie, however, tried to worm her way into the favorite daughter position (nice try, Cass) by going to Richmond alone with the intent of returning Monday evening. Don, bacon supplier that he is, had to drive to Fort Belvoir for work Monday morning. That would have left me alone for a total of 8ish hours. No sweat, right? I'm an independent adult. Surely, I can handle 8 hours of me time. But, since this is the "go blow yourself, cancer" update, you know that is not what happened. Instead, 3 minutes before Don was supposed to leave, blood started shooting out of my nose as if I was an extra in Tarantino flick. I honestly think that if I hadn't been trying to staunch the flow, the blood would have arced out of my nose. The force was that great. I continued to bleed, albeit less dramatically, for the next 3 hours, necessitating a trip to get blood work to make sure I wouldn't need a platelet infusion. Since I can't shift gears, steer, and hold a tissue up to my nose at the same time, Don had to delay his work trip to drive my sorry ass to the doctor's office. So, F. U. cancer # 2: Fuck you cancer, for making a little nosebleed potentially life threatening, and while we're at it, F. U. cancer #3: Fuck you cancer, for making Don late to his work thing. Note: The blood work came back fine.

As a result of this snafu, Don, Cassie, and I decided that I am not allowed to be left alone anymore, not even for 8 hours. So, F. U. cancer # 4: Fuck you cancer, for making me feel like a freaking 2 year old who needs a baby sitter.

To add just a touch more drama to the nosebleed story, I'll supply some extra background about my life. Before this whole cancer drama started, I was supposed to be helping my beloved lab mate, Katie, run the monkey lab. Running the lab consists of running research trials (all behavioral, enriching, non-invasive trials, of course) and monkey husbandry. The research trials are flexible in terms of when we run them, as is some of the monkey husbandry. Some of the husbandry, such as weighing the monkeys, however, should happen every day, but missing a day isn't the end of the world. And then some husbandry, such as medicating any sick monkeys, is inflexible.

Since I seem to spend quite a bit of my time going to doctor's appointments, sleeping off chemo, or percoceting the bone pain away (monkeys + narcotics = a great idea for a movie, but a bad idea for real life), poor Katie has been running the lab singlehandedly while also trying to write and propose her masters. So, when she wanted to take some much needed and deserved vacation time during one of my Week 3s, and asked if I could fill in for her, I said, "Don't worry your pretty little head about it. Everything will be fine." But, everything was not fine. Even though my nosebleed finally stopped after 3 hours, if a drop of blood passes these nostrils for the rest of the day, my oncologist advised me to Stop! Do Not Pass Go! and head to the E.R. asap. Things that tend to make nosebleeds start up: bending over and lifting things. Things that happen as a routine part of monkey care: bending over and lifting things. Biohazards that should never be part of an animal care routine: bleeding on the animals. So, F.U. cancer #5: Fuck you cancer, for making me completely unreliable. And, F.U. cancer #6: Fuck you cancer, for interfering with my monkey care. And finally, F.U. cancer #7: Fuck you cancer, for making Katie feel like she doesn't have backup when she needs it. Note: the monkey got medication but no one got weighed.

Also F. U. cancer for making my nose hurt from the nosebleeds, for making pizza and grapes and Taco Bell and soda taste gross, for making my parents worry about me all of the time, for making me look like a vampire every time I floss my teeth, and for making me stupid in the brain. As far as I'm concerned, Cancer, you and I are fucking done professionally (please tell me someone gets this reference).

2009-08-02T05:57:00.001-07:00

What? 2 updates in 2 days? You better believe it!

And now, a continuation of the weeks of chemo. When we left our description of chemo, I was expounding on the gross things that seem to surface during Week 2. But all Week 2's must come to an end and give way to Week 3's.

Oh Week 3, the sweetest of all of the weeks. How I wish I was living in Week 3 right now! Gone are the nose sores and fungal mouth of Week 2. The nausea and fatigue of Week 1 is but a distant, ethereal memory. Week 3 rides in as if on a breath of fragrant Spring air, fresh and rejuvenating, ready to lift me to new heights of wellness.

In all seriousness (ha! like I can be serious), Week 3 is the BEST! WEEK! EVER! I've plowed through the white blood cell nadir of Week 2 and have regained a healthy immune system. I've stopped taking my chemo pills and have managed to excrete any infusion remnants. My bone pain has subsided, and I've slept off my percocet hangover (I like to picture this like something out of a drug movie, with puking and sweating, but it's just a long nap). Thinking no longer feels like trying to push a watermelon through the eye of a needle. In short, I'm pretty normal and healthy.

But the best thing about Week 3 is that I am not only normal and healthy, but that I'm in a position to compare that normal, healthy feeling to the rest of chemo. So, while I am really just regular HM, compared to the HM of weeks 1 and 2, I feel like super HM. To illustrate how amazing this feeling is, here is a list of things that I have resolved, in all seriousness, to do during the last 2 Week 3's: train for a marathon, write my young adult novel (kids, this will happen, but probably not during chemo), learn to skateboard, go clubbing in NYC, etc. I feel peppy and vibrant and inspired.

Unfortunately, Week 3 is followed shortly by another Week 1, but I'm encouraged by the fact that there will be a final Week 3, followed by no chemo. I'm hoping that going through chemo will prevent me from taking this feeling of vitality for granted, and that I'll have the perspective needed to really flourish once it's over. Then, I can become one of those people who gets really into the pink ribbons and starts talking about how cancer is the best thing to ever happen to me and living each day to the fullest. You'll love that.

2009-08-01T06:34:00.001-07:00

Update from the hinterlands of the chemofront (or something like that).

Whoa boy! This chemo has been both the easiest and hardest, and I shall wax poetic about both aspects now. To begin, some details of the infusion itself - The infusion happened in the brand new Cancer Institute building at Hershey, which is pretty nice. I think the word "infusion" needs to be stricken from the cancer lexicon, though, because I was hoping for a nice open room with lush plants and misters and tropical sounds and possibly a frozen fruity drink. Instead, I got some rooms with hospital chairs and nicer TVs. The actual infusion went fine except for the fact that, rather than run a Miami Social marathon, Bravo ran the last 5 minutes of an episode (I assume they ran the whole episode, but I only saw 5 minutes of it) before showing a boring movie. I'm going to write Bravo a nice letter with lots of exclamation points about how their schedule needs to show the trashiest TV when I'm infusing. Otherwise, the treatment was uneventful.

So, onto the easy aspects of this cycle - I've only had moderate fatigue and nausea. The nausea has been more nauseous (don't start with me, I have chemo brain), and less general stomach discomfort. This is actually good because I have meds to take care of the nausea (which, if you remember, also make me more social and attractive), whereas I have no meds for overall stomach ick. I also have had very little mouth pain and my nose seems to be doing okay so far. So, easy peasy on those fronts.

The harder aspects - As may be evident from this update, the chemo brain killed me this time. I'm starting to come out of it a little bit, but I've felt like a freaking vegetable. Actually, that's insulting to vegetables. I've basically been on communication lock-down, refusing to answer e-mails, the phone, or texts unless they are from someone who doesn't expect me to make sense in the first place (you know who you are). For some reason, the percocet has also been hitting me harder, which makes me even dumber. It's a one-two punch of stupid. I'm hoping that by the middle of next week, I'll be sharp again. Regardless, this is going to make for an interesting Fall semester!

And of course, the real news that everyone is waiting for - My tumor is down from 5.5 cm to 3 cm. The doctor didn't officially measure it (with her official measuring tape), but she did palpate and proclaim it around 3 cm. I will say that it used to feel like a D battery, and now it feels more like a gumball. If it continues to shrink at this rate, there may be no tumor left at surgery time, which is great prognosis-wise.

Soon to come - an update about what Week 3 of chemo is like and perhaps a soliloquy about my neupogen shots.

2009-07-28T06:34:00.000-07:00

Today is chemo day, and I've spent remarkably little time thinking about what to wear. Not sure what that means. It will be my first deliciously fragrant infusion in Hershey's new cancer center It has WiFi, so there is a chance you may see me on the interwebz (however, it also has cable, and I'm really hoping Bravo will be showing the deliciously trashy looking NYC Prep or Miami Social).

Also, I have to take steroids on the day before, day of, and day after my treatment. While I have yet to experience 'roid rage (settling merely for 'roid 'rritation), it does screw with my sleep, and therefore writing, habits. If you see extra typos or things that don't make sense, just imagine me whipping out the cancer card.

So, onto Week 2 (electric bugaloo) after the infusion.
I'd say that Week 2 is a misnomer (which is sad because I came up with it, but, well, cancer card), because it really starts around Day 5 after treatment. By Day 5, most of the nausea/stomach yuck, fatigue, and weird limb fire has abated, and we get into the really strange side effects. Without the fatigue to sideline me all of the time, these side effects tend to have less impact on my daily life, which is nice. However, they tend to be much more unusual and grosser than the Week 1 side effects. Since I love gross things, I thought I'd describe them for you.

First gross side effect - oral thrush, the yeast infection for your mouth! Apparently, this is one of the most common side effects of immunosuppression. Essentially, my wacked out body can no longer keep my oral flora in check, so yeast (which lives in everyone's mouth, including yours, right now) decides it's time to subvert the dominant paradigm and make its move for supremacy. Which hurts. A lot. When I was in the hospital that time, they kept telling me about how scary shingles are and how I needed IV antibiotics so I didn't die, and my only thought was, "Can you please give me something for this thrush?" Thrush can spread to your esophagus, which causes a quick, gross, and painful death. Unfortunately, I can't really gargle with Monistat (boys, those are the commercials you look away from when you watch Grey's Anatomy with your lady), but I do have some antifungal pills I can take now.

Second gross side effect - sores on the inside of my nose. I have NO idea what this is about, but it's happened twice now. I'll give you an update on it if it's particularly gross or weird after I've talked to my doctor to get the 411. Basically, I just get sores all along the inside of my septum. They are bloody and crusty, and they sit right inside my turbinates (those little flappy things that are right on the inside of your septum), and the crust rubs up against the tubinate every time I move my nose. They are more irritating than painful, but make me fidget with my nose a lot (which is classy). Reading the internet, which is ALWAYS a good idea when looking for medical information, seems to suggest it's a side effect of Avastin, one of the drugs I take for my clinical trial.

Third gross side effect - hair loss. So, you mostly know about this one. I started losing my hair on Day 15 after my first treatment and it stabilized around Day 18. The weird thing is that it happened again on Day 15 of this cycle. This is AWESOME! My hair was already a lost cause, but now I have even less leg hair to shave. Someone on one of the boards I post on was saying that she works in a cancer center and a lot of people's body hair never recovers, while their head hair does. If I can get out of cancer with smaller boobs and no leg hair, it will have all been worth it. If you are the praying type, this is the ultimate goal.

I'd like to talk about the hair loss thing because I've been having "feelings" about it. As many of you know, I'm not generally one of those people who has a lot of "feelings," but somehow I manage to soldier through. Many of these feelings, such as feeling conspicuous and unattractive, are pretty normal and just need some time and working through. However, one feeling has really surprised me, so I thought I'd share it. When the wind blows through the sparse stubble on my head, it is the most amazing sensation ever. Twice, I've caught myself lying in bed feeling sad that so many people never get to have the wind flow through their stubble and wondering if there is a way to induce the same level of thin stubble without going through chemo so that I can share it. I imagine I'll become less enamored of this once Winter hits, but for now, I really pleased that I've gotten the chance to experience it. Perhaps balding men get to go through the same thing.

2009-07-26T08:02:00.000-07:00

I have my next chemo infusion on Tuesday, so I thought I'd write a nice little update about what chemo has been like. I feel like chemo is one of those things that sounds super scary, and thus, I'll scratch your morbid itch with some tales from the dark side. Since these updates tend to get a little epic, and I'd hate to offend the tl;dr crowd (that's "too long, didn't read" for those of you who haven't been spending a lot of time reading the internet lately), I'll discuss a different week of chemo during each of the next few updates.

First off, let me describe my chemo schedule a bit. I get an infusion every three weeks, and my side effects seem to change with every week between infusions. When I get my infusion, I get a shot of sweet, sweet Ativan to calm me, (which I don't really need, but I get this weird smug thrill anytime I'm prescribed drugs that have street value, like I won a prescription lottery or something) and a nausea suppressant and then I get two chemo drugs. The first is docetaxel (brand name taxotere), which is standard treatment for non-metastatic (yay!!) breast cancer. The second is a drug I can't spell (brand name avastin), which is part of the clinical trial. I also get another drug I can't spell (brand name xoloda) in pill form that I take for 14 days as part of the clinical trial. Avastin and xoloda are used in patients with metastatic breast cancer, and the clinical trial is looking at whether patients who get these drugs as part of standard chemo have better outcomes than patients who only get docetaxel. I will get this regimen of drugs for two more cycles (i.e., Tuesday and then three weeks from Tuesday) before my drugs change to what's known in cancer circles (you know, among us elite cancer patients) as AC. I'm sure I'll write another long post about that when it happens.

In this update, I'll describe Week 1:
So, the actual infusion process has a tendency to be pretty great. I start off with the ativan and revel in the smugness that only comes from knowing that kids are illicitly trading their hard earned allowance for this drug in dingy high school bathrooms. Then, I lie around and watch trashy TV (full disclosure: I adore terrible TV, movies, and amateur fiction, the trashier the better) for a couple of hours while the rest of the chemo drips straight into my heart (!!) and then make Cassie or Don or whoever drive home.

Immediately afterwards, I mostly feel tired (thanks ativan!), but I also feel the effects of the chemo pretty quickly. My biggest side effect during week 1 is an overwhelming sense of malaise. I feel tired and gross and mentally foggy and just generally mildly unwell. I have a little bit of nausea and a little bit of indigestion, but mostly my stomach feels somehow off. I get a touch of peripheral neuropathy which makes my skin and extremities feel like they are stuck in a low temperature fire. It doesn't really hurt, but again, it feels mildly uncomfortable. Finally, I get this kind of profound fatigue. I'll be out doing something, like complaining about how mildly unwell I feel (one of my favorite pastimes), and suddenly feel this overwhelming need to take a nap. Then, like a heroin addict looking for his next fix (I'm trying to add a lot of drug references since I'm writing about chemo), I become singularly consumed with a search for a bed. Once the bed is found, I cook it up and shoot it. Or maybe lie in it and sleep for 2 to 3 hours. This can happen up to 4 times per day on a particularly fatiguing day and usually goes away by Day 4 or 5 after chemo. Week 1 is the least fun of all of the weeks.

I also have a lot of taste changes during Week 1. Taste changes are easily the weirdest part of chemo because they come and go, so you never know when you're going to get a surprise bite of disgusting. Even water will taste strange during Week 1. Taste changes are also the saddest part of chemo, because inevitably, I'll get an intense craving for something, like a delicious refreshing Coca Cola, only to have it taste terrible. The craving won't go away, so I'm just stuck longing for something that no longer exists for me. I told you it was sad! One of the weirdest taste changes, which only seems to happen during Week 1, is that carbonated beverages, such as the aforementioned soda, all seem flat and too sweet. Gummi bears, on the other hand, taste bitter. (To those of you that gave me tons of gummi bears during my chemo shower, please don't fret. They start tasting great again during Week 2.)

During Week 1, I also have to get daily neupogen shots. You may remember from past updates that neupogen is a drug that boosts my white blood cell counts. They make another drug like this, neulasta, which you only get once, but apparently it's contraindicated during this chemo regime. So, everyday, I traipse off to the hospital to get the injection.

It is during these trips to the hospital that I sometimes pause and reflect on the cancer experience and think, "This kind of sucks." My inner monologue usually goes more like, "I can see how someone who wasn't as optimistic would really get bummed out by this. It's inconvenient and kind of hurts and I feel mildly unwell anyway and my hat looks kind of dumb. You know, (aside: I never really think 'you know' to myself, but for the sake of written transitions, let's pretend I do), they say that optimists are the least realistic people and that depressed people have a much more realistic view of the world. Maybe I should be depressed. That doesn't sound like much fun," and then I start wondering about what kind of douchey thing Jon Gosselin got up to that afternoon and if acid washed jeans will ever come back in (as an optimist, I think not). Usually, after the shots, I get some bone pain (that's how I know it's working) and take some percocet and feel smug.

Also, during these trips, I get blood work done, and I think about how blood is made up of different kinds of blood and how I can have too much of some blood and not enough of other blood. Think about this sometime and it will BLOW YOUR MIND!

Weeks 2 and 3 to follow when I get around to writing them.

Not related to chemo, but Cassie just told me that in the Philippines, they have Orange Julius, but it's called Orange Brutus. The more I think about that, the funnier it gets.

2009-07-14T11:40:00.000-07:00

Time for a cancer update - only 5 days later than promised. (Give me a break, I have cancer.) Honestly, there isn't much to report. I got chemo on Wednesday, which went fine, but then I promptly came down with chemobrain and lost my keys. After an enthusiastic search, in which two nurses and a security guard helped us turn the hospital upside down, our hero, Cassie, thought to see if we'd left them in the car. We had! The keys were found and a delightful ride to State College was had by all (actually, just me and Cass, because it would have been weird if the nurses and security guard came home with us).

This chemo cycle has been different from the previous one in a few ways. First off, I received slightly lower doses of most of the medicines due to my unfortunate hospital stay during the last cycle. I've also been getting daily neupogen shots to boost my white cell counts. The shots seem to be helping, since I haven't been having many of the infectious type side effects that I suffered from last time. While the infectious type side effects (ITSEs) have been practically nil, I've been much more fatigued with this cycle and the aforementioned chemobrain (a real thing they tell you about in the hospital) has been worse. Today, I woke up pretty bright-eyed and bushy-tailed (growing a tail is a side-effect of one of the meds I'm on), though, so I'm hoping that I'll be back to my perky self in no time flat.

Some excellent news did come out of my pre-infusion doctor appointment. Every time I see my medical oncologist, she takes a little measuring tape and does a rough estimate of my tumor size. After my first round of chemo, my tumor has shrunk from about 5.5 cms, to 4 cms! If it continues to shrink at this rate, I will have no tumor by the time they do surgery! Not only is this fantastic news for my tumor, but it means that any cancer cells floating around in my bloodstream are in for a world of hurt.

So, that's about it for this update. I was hoping to write something a little funnier, perhaps incorporating some of the weirder chemo side effects, like taste changes, but the brain fog is impeding my usually rapier sharp wit. I'll try to save up some good jokes for next time.

2009-07-08T07:23:00.000-07:00

It's chemo day! Here's to hoping that it's a theme day on the cancer ward! I'm wearing my "Chemo: all of the cool kids are doing it" shirt to show my chemotastic pride, and my favorite shoes that I wanted to wear last time but ultimately decided against. Fascinating, I know.

I thought you might like to see some pictures of the great head shaving of 2009. Facebook says that anyone should be able to view them using this link: http://www.facebook.com/album.php?aid=87506&id=775822206&l=531411302f. That look lasted a total of like 12 hours before I started getting a bald patch in the front of my awesome fauxhawk. I have to say, I loved the really short look, though. I can't wait to rock it again when the hair grows back in. (Also, please note that we are redoing the bathroom and don't actually live in a hovel...unless it increases your sympathies towards me, in which case we do.)

Also, here is a picture now that I've lost most of my hair. Please note that the glamor shots angle is a result of Don being like 18 feet taller than I am. http://www.facebook.com/photo.php?pid=1936266&l=9cbda30944&id=775822206

Sorry for the lame links. I will fix after chemo.

I still have to shave my legs (which is BULLSHIT), but less frequently. My armpit hair is pretty much mostly gone. My eyebrows are thinning, but very slowly. My eyelashes were a joke to begin with, so I haven't been keeping good tabs on them. Maybe after all of this is done, I can get that drug that makes your eyelashes grow without feeling like a total tool about it.

I'll post a second update after I get my chemicals pumped right into my heart. (Can you tell I am completely and utterly enamored with the idea of things going straight into my heart?)

And finally, my tumor feels very different and smaller and not as attached to my skin. Chemo is definitely working.

2009-06-30T20:00:00.000-07:00

We have hair loss!! I can't even describe how weird this is (not weird bad, more weird fascinating). I'll run my fingers through my hair, hair that was firmly attached to my scalp as recently as this morning, and my hand will be littered with loose strands. If I actually pull on the ends, I get big chunks. It's not as dramatic as you'd see in a movie about cancer, but it's more dramatic than any hair loss experience I've had previous to this. It's also incredibly messy.

I'm going to shave my head tomorrow. I'm thinking I'll rock a mohawk (technically a fauxhawk, because I plan on having side stubble) for a little while, just because I can, before buzzing the whole thing.

They say that this tends to be the hardest part of being a cancer patient, but I'm really excited. Easily, the best part of having cancer is getting to pull the cancer card. No one can say no to the cancer card. And now I get to WEAR it! I don't even have to pull it! I'm going to be unstoppable! Plus, when else is it acceptable for someone my age to rock a mohawk? But what are you going to say? Nothing! Because you wouldn't deny a girl with cancer her last hairstyle of choice, would you? (See what I did there?)

In other news, it sounds like my chemo dose will stay the same for my next infusion and I will get a Neulasta shot, just like I wanted!

2009-06-29T19:59:00.000-07:00

A new update in which our fearless patient gets to spend 3 days watching cable TV while all doped out on Percocet:
The really short version of this story - I spent 3 days in the Mount Nittany Medical Center, because I had an infection and a really low white blood cell count. I'm out now but I can't be in public for a week. The drawn out version, with more quips, is below.

I'm not sure of the best place to start this story, but I've decided to take the long view and talk about my entire chemo experience. As I reported on chemo day, actual chemo and the next few days were a breeze. The Thursday after chemo (day 2), Don and I went to Pittsburgh for a wedding. I managed the car trip, the rehearsal dinner, and the wedding with little trouble (although daily naps were needed). Saturday, the day fatigue was supposed to set in, we drove back to PA for Aaron and Marissa's lovely wedding. I had a short nap before the ceremony and felt great until around 8 pm. Feeling a little tired and achy, I decided to call it a night.

This was followed by 4 days of feeling mildly fluish. I also had a nice rash, and my mouth hurt. Since nearly every malady under the sun is listed as a side effect of chemo, I didn't think much of it until Wednesday when my temperature (which I have to take 4 times per day) exceeded the critical threshold of 100.5. It was 100.6. Being a good little patient, I called the oncologist on call in Hershey, who, after some hemming and hawing, decided I should go to the ER in State College, just in case. Continuing to be a good patient, I did just that.

It was the opinion of both the doctor in the ER and the doctor in Hershey that I was probably just fine, but we should check my white blood count to make sure my immune system wasn't shot (known as being neutropenic). Turns out, my white blood cell levels were nearly undetectable, and, for all intents and purposes, I had no immune system. As a result, I'd gotten what's known as a neutropenic fever, which is when basically anything in the environment causes an infection. While I was freaking out about the possibility of getting a staph infection from being in a hospital with no immune system (staph infections being one of my biggest medical fears, up there with cancer, anterograde amnesia, and shingles), I paused to self soothe by thinking of the positives in this situation:
1) Having no white blood cells means my tumor should fear me like the fist of an angry god, because the chemo is slaughtering all of my quickly dividing cells.
2) Maybe all of this wonkiness I've been feeling is not a result of chemo itself, but a result of a subsequent infection.

While I was thinking these things, the hospital staff was admitting me and took me to a nice room with a view of some cattle. At this point, it was 5:30 am and I'd spent all night in the ER, so I was hoping to get some sleep. Instead I got a nice migraine. (As some background, I get what are known as classic migraines, which means any pain is preceded by a half hour of warning in which about 50% of my vision gets filled with patches of what looks like TV snow.) So, I stumbled around the hallway until I found someone who could find a nurse. While I was waiting for the nurse, I self-soothed by thinking, "This is the hospital. They get patients with migraines all the time. They can just give me a shot in my port and it will go away." Instead, the nurse came by and told me I was only approved for Tylenol. Once again, I'd met my old nemesis Tylenol. I told the nurse in that Tylenol was not an appropriate pain reliever for a migraine, and she needed to find a doctor to prescribe something different.

Also, during my aura, I met with an infections disease specialist (or, from what I could see, about half of an infectious disease specialist) who told me that the crazy rash was....wait for it...shingles. Yes! I have managed to acquire not one, but two of my most feared medical maladies within 2 months!! Way to go me for facing my fears! He also said I had oral thrush (like a yeast infection for your mouth!), and I needed to be in IV antibiotics until my white cells came back up. Then the nurse came back and told me the doctor had prescribed percocet for the migraine. Now, percocet is not really an appropriate treatment for a migraine either, but I could no longer muster any righteous indignation.

So, Cassie came by, and I spent the rest of the day doped up on percocet, hooked up to an antibiotic IV (through my port, which I've come to really appreciate), watching Millionaire Matchmaker on the cable TV and taking Valtrex (which, thanks to their genital herpes commercials, made me feel slightly skanky). The next day, Friday, my WBC was up only marginally, so the oncologist overseeing my treatment decided to give me a shot of a drug called neupogen, which makes my bone marrow produce more white blood cells and causes really weird, terrible bone pain (that means it's working). While the bone pain sucked, it did entitle me to more narcotics, which really help to pass the time in the hospital. So if you replace Millionaire Matchmaker with Housewives of Atlanta/New Jersey and add a few antifungals in with the Valtrex, you basically have my Friday and Saturday. The neupogen worked like a charm and by Sunday, my white blood cell count had gone from .02 to 12! They let me come home, where I have no cable or addictive prescription drugs.

I'm at home now, armed with prescription antibiotics, antifungals, and antivirals (and magic mouthwash...it's magic!). My immune system and everything else is on the mend, but I'm not allowed to go to public places for 5 days, after which point, I'm supposed to get permission from my oncologists at Hershey before returning to work. (at least according to my little form).

So, some frequently asked questions:
1) What does this mean for your clinical trial?
Apparently, clinical trials have mechanisms to handle "adverse events." Essentially, two things can happen. I may either get a lower dose of the chemo drugs in my next infusion/pill, or I may get a neulasta shot (similar to the neupogen shot) the day after my infusion. I'm hoping for the second option since the current dose of chemo is kicking my cancer's butt (I can already feel changes in the tumor size), and neupogen was so successful for me.

2) Have you lost your hair?
Not yet. It is supposed fall out 10 to 14 days after the chemo dose (although it sometimes falls out only after multiple doses). Monday will be day 14, and my hair is currently firmly attached to my head. I've run out of shampoo (I'm currently using the Suave we bought for the dog), and I've spent a lot of money on cute hats. I think the value of the cancer card goes way up once the bald head is involved, and I'm going to be pretty upset if I don't get to enjoy every last perk that cancer has to offer.

3) Is there anything you can do?
Since Don works from home and Cassie left the Philippines to come take care of me, I'm pretty set in terms of actual manpower. However, things like mixed CDs really help on the car rides back and forth from Hershey. And old books and magazines have been fantastic for mitigating the waits at various doctors appointments. So, if you'd like to help, but you're at a loss, these sorts of things have been great. And of course, just hearing from people is really, really nice!

I think that's it for this novel of an update!

2009-06-16T19:59:00.000-07:00

Got my first round of chemo today. Not too much to report, really. I feel pretty good, although a little tired. That may just be due to the ativan aperitif they gave me before starting in on the entree drugs. Unfortunately, I'm not too nauseous, which means that my dream of being able to spontaneously vomit on people who annoy me remains out of reach for the time being. Today through Thursday are supposed to be my big nausea days. Apparently, my big fatigue days will be Saturday (in time to be a real drag at Aaron's wedding) and Sunday, and the days when I'm most susceptible to infection will be between day 5 (Saturday) and 10 (whatever day is 5 days from Saturday). Infection results in IV antibiotics, which seems a little too dramatic for my taste, so you can expect some OCD handwashing during those times.

Fun fact - Some of the additional effects of my anti-nausea pills include: improving social interactions, mood, expression of mood, and appearance. I'll be interested in feedback from you to see how that is working out for me.

Also, it was luau day in the pediatric clinic, so the halls were filled with nurses in grass skirts and coconut bikinis. I hope they start having theme days on the cancer ward!

2009-06-14T19:58:00.000-07:00

Thursday -
I'm going to gloss over Thursday, because it involved a trip to the DMV, which no one wants to hear about. We also drove back up to Hershey to get an echo cardiogram (cool!) and an EKG (boring) as baseline measures before starting chemo.

Friday -
Cass and I woke up before the sun to get to Hershey for our 6am surgery call for my port installation. My port is a little plastic device that sits right under my skin below my clavicle on the left. It has a little sort of reservoir thing you inject into, and then a little tube that runs through a vein (when the doctor said which vein, I thought "oh, I've heard of that one," but now I can't remember which it is) and empties out right into my heart. RIght into my heart!! That's crazy! They said I would be awake for the procedure, but this was totally a lie. Maybe I'm sensitive to anesthesia or something, but I was dead asleep through the whole thing. I do remember that they put a little hood over my face, ostensibly so I couldn't see them putting a tube into my heart, but then I feel asleep, so I wouldn't have seen anyway. Once I'd woken up, eaten my graham crackers, and had a delicious full-sugar soda, I asked the nurse for some tylenol (having already been told that tylenol would be enough to kill the pain...yet another lie). She asked, "Do you have a headache?" I was all, "No lady, you just installed a little plastic tube in my heart and it hurts." I should have known that was the time to demand the good stuff, but I was groggy and didn't have my full wits about me. I was given a box lunch (which did not include a cookie!) and discharged. On the plus side, I did get to watch some cable TV while waiting for the anesthesia to wear off, and I got to complain a lot about how sore my port was when I got home. I would like at add an additional amendment to the healthcare bill called, "If you have to have anesthesia, you get a vicodin."

One other note about the port - I'm not supposed to shower until Wednesday, so if you see me, keep your distance.

So, that's the news from this week. I start chemo on Tuesday, and I'm thoroughly looking forward to that adventure. I bought a few cute new hats to wear once I'm bald. I've been considering shaving my head before starting the treatment, because everyone says it's a good idea. But, in typically stubborn HM fashion, I'm convinced that if I do that, I will be the one patient who doesn't lose her hair and then will be stuck with a superfluous buzz cut. So, the hair stays at least through next weekend.

I'm still in a great mood, helped by the news about being a postmenopausal woman, the scan results, and getting to spend a couple nights with my good friend Becca (seriously, if anyone wants to see some cute twins, she's got them). I'm sure the prophylactic antidepressants that my oncologist prescribed (they are good for hot flashes and the blues) are helping, too.

As always, feel free to share this news with whomever you like, and let me know if you don't want these updates (I promise I won't judge). One final note - One thing about having traumatic news is that you get an increase in personal communication. I LOVE THIS! I've been so touched by the love that I've received during this time, and I wanted to make sure that you all know that! If I don't respond to you right away, please, please, please don't think that I don't appreciate and adore your support. Calling doctors and going to appointments has been pretty much a full time job at this point, so I'm way behind on pretty much everything else.

2009-06-14T19:57:00.001-07:00

Wednesday - Chemo doctor #2 (electric bugaloo) and the Plastic Surgeon
We started off Wednesday with an appointment with a medical oncologist at Hopkins. Astute readers will remember that the surgeon at Hershey wanted me to have surgery first and then chemo, while my team at Hershey advocated for chemo first and then surgery. Both cited data that the survival rates are the same regardless of order, and I was already pretty sure that I wanted to do chemo first to take care of any of those micrometastases as quickly as possible. However, I also wanted to talk to a medical oncologist at Hopkins to see if a) the surgeon was recommending surgery because he was a surgeon, b) if there were any drawbacks to doing chemo first and c) if Hopkins recommended a different course of chemo.

I'll start off by saying that I loved the medical oncologist at Hopkins (I also love the one at Hershey). She was incredibly thorough. She told me that it was entirely reasonable to have chemo first, and in my case, she would recommend it as well. She looked at the regimen that my clinical trial involves and said that was very reasonable and aggressive. She said that if she was in my place, she would also choose to do the clinical trial. She also said that there is absolutely no benefit to choosing Hopkins over Hershey for chemo, especially since I'll be part of the clinical trial and my treatment will be highly standardized. She did mention that it might be worth going to Hopkins for surgery, and that people frequently choose to get their chemo at one hospital and their surgery at another. I think I will go for another surgical consult at Hopkins (I didn't much like the surgeon I met there last week) before deciding what to do.

She also told me that I have "the cancer of a post-menopausal woman," which caused me to have to hug it out with her (I've realized that I have this annoying habit of saying, "Let's hug it out" any time I need a hug from my doctor). So, one thing I've been reluctant to mention is that, contrary to what you'd think, having breast cancer young is actually really bad. The prognosis for most young women with breast cancer is much worse than it is for post-menopausal women. Part of the reason is that, like in my case, the cancer is caught much later than it tends to be in older women, because young women don't undergo breast cancer screening. Another part of the reason is that young women tend to get a more aggressive form of the disease that is unresponsive to hormonal treatments. Apparently, I don't have this type of cancer at all. Instead, I have a cancer that is much more treatable. So, this is fantastic news.

She told me that if my bone scan and CT scan didn't come back clean (I hadn't gotten the results at this point), that metastasized breast cancer is more like having a chronic condition like diabetes or kidney disease than a terminal illness. This was, and continues to be, a huge comfort.

Finally, she mentioned that she'd mail me a copy of her dictation notes. I pointed out that the dictation notes at Hershey called me "lovely" and "very pleasant," and that I fully expected her to up the ante. She promised that she would, so I'll report back once I get the notes. Ideally, I'd like to start a compliment war between my various doctors.

The plastic surgery consult was pretty much a waste of time. Apparently, I can't have implants because I'll need radiation. (I'll need radiation, despite having a mastectomy, because there is lymph node involvement.) I did learn that I don't have enough fat on my stomach to do a breast reconstruction, so I'd have to use butt fat. I think that's flattering, but I'm not sure. Also, the nurse that spoke with me had had a fascinating amount of work done. As many of you know, I'm a big fan of playing "guess what work the celeb has had done," so the opportunity to play in real life was a treat. I'm almost positive she'd had cheek implants and forehead botox, despite looking younger than me (although maybe she only looked younger than me because of the botox). She may have also had cheek botox and/or collagen, because she couldn't move her lips properly. Her lips were full, but they didn't have that weird underlip feature that is typical of fresh collagen. She looked so overdone that she was starting to fall into the uncanney valley. The doctor, on the other hand, looked like she hadn't had a haircut in 15 years. An interesting pair to be sure!

Next up, we soldier on to Thursday and Friday.

2009-06-14T19:57:00.000-07:00

did receive news that THERE IS NO EVIDENCE THAT MY CANCER HAS METASTASIZED OUTSIDE OF THE BREAST! I do NOT have Stage IV cancer. Now, that being said, there is a chance that I have what are called micrometastases, which are cancer cells that have spread in the blood stream, but with any luck, chemo and hormonal therapy will get all of them.

I think to make this simple, I'll just go in chronological order.
Tuesday - Don, Cassie, and I woke up bright eyed and bushy tailed at 5 am to make it to our 8am appointment with a fertility specialist at Hershey. Why did we see a fertility specialist? Well, the chemo will probably shut down my ovaries for a time, and some women don't regain their cycle. Both my chemo doctor at Hershey, the fertility specialist and the chemo doctor I saw at Hopkins (we'll get to her on Wednesday) all think that I'll be fertile (like the Nile) after I finish chemo. However, soon afterwards, I start hormonal therapy, which typically last for 5 years and also precludes pregnancy. So, Don and I wanted to see what our options are. It turns out all of the options are a) experimental, b) would delay chemo, c) expensive, and d) don't have great success rates. Don and I decided that we'd save our money for either trying after hormonal treatment or adopting. Since neither of us have ever been 100% sure that we want kids, we're completely okay with this.

At this point, Don peeled off to return to work and Cassie was my partner in crime for the rest of the week. Also, at this point, Tuesday gets a little crazy. Originally, I was just scheduled for a bone scan and a CT scan, but the clinical trial that I'm a part of requires some additional breast biopsies, some blood work, and of course, a bunch of consent forms. So Cass and I are running around trying to fit all of this in. First, we go to radiology, where they give me an IV and inject me with contrast. Usually, you get to wait around for a few hours and relax before they scan you. I, on the other hand, run across the medical capus with an IV tube hanging out of my arm, to give blood at the cancer center, thinking, at least they can take it out of the IV. Only they can't. So, I leave the cancer center with an IV in one arm and pressure bandage on the other to go the breast center. There, they take not 1, not 2, but 5 tissue samples. So, when I finally return to radiology, I not only have the IV and the pressure bandage, but also ice stuffed into my bra. I was a hot mess.

I would also like to take this opportunity to suggest an additional reform to the health care legislation, called the "If it requires lidocaine, I get a vicodin" measure. When someone takes 5 chunks of your boob out (I was starting to worry that there would be no tumor left), and then hands you two tylenol, you feel a little shafted. Then, when you're sitting in the bone scanner (I have no idea what the real name for this machine is) and you start to feel like the machine is going to pick up the throbbing from your now holey breast, you really start to feel like a narcotic is not an unreasonable request. We'll return to this rant when we discuss the port insertion.

The rest of the day was uneventful. My bones got scanned, which was cool because you could see my internal organs on the monitor, and then they did a CT scan of my chest. I will say that I was required to stop eating at 10:15, even though my CT scan wasn't until 3:30, and this was a brilliant move on the hospital's part. I was so hungry by the time I had to drink my contrast, that it tasted delicious. Once these tests were over, Cassie and I drove down to D.C. to stay with a friend of mine before going to see some additional doctors at Hopkins.

Next up...Wednesday at Hopkins

2009-06-02T19:54:00.000-07:00

And now, for Part II - Our fearless patient walks the mean streets of Baltimore for her 2nd opinion
This part was less eventful. Citing the same research that my chemo doctor did, the doctor at Hopkins thinks that I should have surgery first and then get chemo (opposite of what they want me to do at Hershey). Again, survival rates are the same either way, but his feeling is that we need to get the tumor out first, since that's where the cancer originates. I'm going to talk to my doctors at Hershey and give them a chance to rebutt, then read the actual study regarding survival rates, and then make a decision. I really like the doctors at Hershey and I would like to kill any potential cancer elsewhere first, so I'm leaning towards Hershey right now. However, I haven't made any final decision. My friend at Hopkins is scheduling an appointment with a medical oncologist (chemo specialist) there to chat about it further.

Funny story about Baltimore: We stopped to get gas near the Baltimore projects (what isn't near the bmore projects, you ask? heck if I know) and Don got hustled. He tried to pull the "my fiancee has cancer" card, but the junkie came right back with, "That's terrible. You know, I have MS, but don't have any money for treatment." Don ended up giving him $10. We need to look into ways to harness the creative powers of junkies for good. Or perhaps we've already done that, and it's called advertising.

I've gotten a few questions about what stage I'm in and whether the cancer has spread. The short answer is, I don't know the answer to either question yet. I have a CT scan and a bone scan scheduled for Tuesday (6/9), which should give us an indication if the cancer has spread anywhere beyond the breast. Typically breast cancer spreads to the bones, liver, lungs, and brain first. When I had my MRI last week, the doctor said that she could see some of the liver and bones on the MRI, and they looked okay. That's not definitive by any means, but it is a good sign. I believe I get staging information after these tests, but then my chemo doctor said that they typically do staging information after surgery. Part of the staging criteria depends on how many lymph nodes are involved, and they determine that after they've been removed during surgery. I do know that my tumor is 5.5 cms, and from what I've read online (dangerous, I know) that means it's at least a Stage III cancer. However, no doctor has told me anything about staging, so that tidbit may be meaningless.

I was a little mopey last week, but I've been in a great mood this week. My chemo doctor at Hershey emphasized how treatable this is and the surgeon at Hopkins seemed to feel that the cancer was localized in the breast. I think I just needed a little medical reassurance that I probably won't die to chase the blues away. I really will never have an excuse to wear crazy wigs with impunity again, and I think this port may act as the ultimate gross out card. So, as long as I

Part I

2009-06-02T19:53:00.000-07:00

Time for a new cancertastic update! This one will be in two parts.

Part I - Our fearless patient learns all about chemo
Did you know that chemo will make your head hair fall out, but not your other body hair (which seems tragically unfair)? Also, if you get a prescription for a wig, it's called a cranial prosthesis. I met with my chemo doctor at Hershey on Monday. We're waiting for one test result (HER2, for those of you who know stuff about cancer) to come back, but the plan is to start chemo on 6/16. The exact type of chemo will be determined by the result of that test and whether I decide to participate in a clinical trial (I think I will, because I like being part of medical science). The doctor told me that I will get an infusion (which sounds like a delicious tea, but is just medspeak for getting medicines injected straight into your heart) once every 2 to 3 weeks. I will be nauseous for a day or two following the infusion (again, that sounds so pleasant) and then will probably be fatigued the following weekend. She said most people work full time during chemo, but that I need to be hypervigilant about avoiding infection. I will be able to work with the monkeys but should avoid the lab during the days when my white blood cell counts are the lowest.

The doctor said that chemo is effective on 95% of cancers and can shrink tumors substantially (which is important because my tumor is big). Hershey is in favor of chemo first, then surgery, which will come into play when we get to part 2 of this e-mail. They like to use chemo first for two reasons: 1) they can tell if it's working if my tumor is shrinking which tells them that 2) if the cancer has spread elsewhere, the chemo is treating it immediately and effectively. Survival rates are the same whether you do chemo before or after surgery.

One other note - I will get a port, which is a little thing they'll install in my chest with a venal catheter that goes straight to my heart. I'm not sure how I feel about this. Part of me is squicked out, and part of me feels like it's kind of badass. I asked my friend Gabe, who is a med student at Hopkins, why they don't install them for heroin addicts as a risk mitigation measure. He said it's illegal, but there was an anethesiologist at Hopkins (who had a drug habit of his very own) that got caught installing them for other addicts for $1,000 a pop. Scandalous!

This post is getting long, so I'll start a new one with Part II.

2009-05-27T19:52:00.000-07:00

Just an update from the doctor today:
1) My tumor is between 5 and 7cm. I'll go through a CT scan on 6/9 which will tell me exactly what stage I'm in.
2) The MRI indicated that my bones and liver look okay (i.e., hopefully has not metastasized).
3) The cancer is estrogen responsive (or something like that), which is good.
4) The current plan is to go through 4 to 6 months of chemo, followed by surgery, followed by radiation. I'll also be having hormonal therapy, which I think is like instant menopause.
5) May be able to just get a lumpectomy, but it sounds more likely that I will need at least a single mastectomy.
6) If the cancer has a genetic component (statistics would say this is likely), I will want to consider a double mastectomy.

Other notes:
1) I have an appointment with the medical oncologist (i.e. chemo doctor) on Monday at Hershey
2) I'm getting a 2nd opinion at Hopkins on Tuesday.

I'm feeling a little raw and shell shocked right now, but hopefully a good night's sleep will perk me back up. In better news, I got my dictation notes, and they mentioned that I was "lovely" and "pleasant" (but also "appropriate," so they might have gotten the wrong patient).