Welcome to breastcancer.org

Isn't that a weird welcome message? I just signed up for a login at breastcancer.org, and that's the subject line of the e-mail they send you.

How long do you think they worked on that? I can just imagine it now... "So, how are we going to make the women feel welcomed by breast cancer[.org]?"

I have a sense of humor, so I would prefer something like this: "Hey, at least it's not lungcancer.org"

I'm not trying to be mean. I would think having lung cancer would be much worse.

I stayed home from work today because I was pretty tired when the alarm clock rang. I had a big weekend - there was the bridal shower for my dear friend, Vicki (I think she looked waaaaay too good for us to even pretend that it was a surprise), and then there were the Mother's Day festivities involving lots of family time and trying to eat as much as my tummy would accept. It was a good weekend, but it did tire me out.

So, today I spent most of the day on the couch with my laptop and the Food Network, working from home. It was a very quiet day where I had some time to myself, which gave me the opportunity to think about things that I can't think about when I'm not alone. Thinking doesn't bother me. I can replay things in my mind a thousand different times, picking up something slightly different each time. It makes me feel like I'm "working on" a problem when I think about it.

I did a little investigating about reconstruction and found some pictures that weren't totally horrifying. That was helpful. I can see 10 pictures that totally scare the crap out of me, and just 1 picture of someone with decent-looking reconstructed boobs and think "that will be me". Or that can be me. I just need to know it's possible and then the rest will take care of itself. So that was good. (If anyone is curious, you can see what one young woman went through months before her wedding to try to put her body back together after a double mastectomy. I don't blame you if you don't want to, though. I don't think I'd be interested if it wasn't something I'd have to do eventually.)

I also ended up at breastcancer.org to read the message boards (hence, the welcome message). I think for the first time I've started to realize that I'm not the only one who has ever had to go through this. I tell myself that I'm unique because I'm young and I get a free pass to feel like the world is ending. But then I read about women who have 5 cm tumors (OMG - how do they go undetected for so long?) and a 26 year-old who has tumors in her liver and cancer in her bones and another one whose husband left her. Whew.

It was very interesting to read about other people. Some people are scared about chemo. It's funny - I wasn't even remotely afraid of chemo. I was looking forward to starting it. Then other people talk about having an AND like it's no big deal - so inconsequential that they call it "and", almost like "&". (AND means Axillary Node Dissection, which is when they take out your lymph nodes. To me, that's really scary for a lot of reasons I'll talk about some other time).

So, it was pretty weird to start reading posts of other people who are going through similar things. Similar, yet quite different. Welcome to breastcancer.org.

The Bald and the Beautiful

Yeah, I said it... I LOVE my new hairdo! I am very tired today, so this should be a short post, but I wanted to share some action shots of this morning's haircut. The video lasts about 45 seconds, and for those who may not know, I wasn't the only one who cut my hair this morning...




What on earth did I do to deserve him? :-)

Emend, Amen!

I'm definitely feeling lots better this round than last round (thanks to the addition of the once-forgotten anti-nausea meds). I feel a little ookey today, but not too bad. Strangely enough, I kind of appreciate feeling crappy now that I know it will eventually go away. It's like I know the medicine is working if I don't feel well. So, I changed my "today I feel" because I definitely started feeling like I didn't want to eat (mildly nauseated) at some point today after lunch.

And now for my favorite news - I think my hair is finally starting to fall out!! Thank goodness. Why, you say? I can't wait to shave my head. It's not something I've "always wanted to do" as I've heard other people say, but I think it will be a lot of fun. And it feels like the next step. That, and I've got lots of beautiful scarves, bandannas, and hats to try out ;-) So, if you are all wondering - tomorrow is "Shave Your Head In Solidarity Day". I don't care if you do it, I just want you to know that tomorrow is the day, and I will absolutely post pictures thanks to my dad, who I don't think is particularly excited to watch me shave my head, but I am so happy he will help.

So... I thought this would be a good chance to show off some interesting pictures of celebrities with shaved heads. And then tomorrow it will be me!

The first is of Natalie Portman. At work, there are three men who have shaved their heads in solidarity with me (another man cut off his ponytail - a big step for him!). Ironically, up until now, I've been the one with hair! I will try to post pictures of them soon, but one of them was being very supportive and noted that some women look quite good with shaved heads, and he mentioned Natalie Portman, the girl from the latest Star Wars movies. One can only hope ;-)

Then my dad remembered Melissa Etheridge, who actually survived breast cancer. So, I thought this one was fitting.

This one is my shaved-head inspiration - Ani Difranco. She's my favorite musician, a singer-songwriter. Her hair has been all over the map, from shaved, to dreadlocks. And she always looks hot. Here's an old picture of her with her head shaved.


And this one is my cancer inspiration. For those of you who don't know, this is Lynette from Desperate Housewives, one of my favorite TV shows. Lynette has cancer on the show, and she is totally the strong woman kicking cancer's ass that I would like to be. It's more than that - she's very principled, level-headed (mostly), and so "real". And she ties a mean headscarf. ;-)


And this is the one chick I hope to God I don't look anything like. Who can forget Britney Spears? As I always say... you can take the girl out of the trailer park, but you can't take the trailer park out of the girl ;-) Oh Britney - I don't know what's worse... the crazy impulsive hairdo, the Red Bull (does that girl need any more substances in her system?), or the cigarette - classy, real classy.


Anyway, tomorrow I plan to post you will see pictures of me, hopefully looking more Ani/Natalie/Lynette, less Britney ;-) Gotta go now, though... I've gotta learn how to tie a headscarf!

Round Two

So, today was chemo round two. Quite honestly, I feel better this time than I did last time, most likely because of the anti-nausea meds that I had this time that they forgot to give me last time.

We arrived at the center around 9:15 and I had my blood drawn. Every time I have chemo they'll have to draw my blood and make sure my counts are okay. What exactly does that mean? Well, chemo can destroy bone marrow, and bone marrow is responsible for making new blood cells (red, white, and platelets).

• Red blood cells deliver oxygen through the body. This is why my heart might have to pump faster than normal (less red blood cells, blood needs to be circulated more). So, I'm supposed to make sure I don't over-exert myself when exercising.
• White blood cells fight infection. This is why I caught a cold last time. My body is more susceptible to infection because I have less white blood cellls. Something as simple as eating raw vegetables could be a problem if my white blood cell count is too low.
• Platelets help blood to clot, say when you get a cut. So I have to be careful about cuts & scrapes. This is why I've decided to stop cooking. I just can't cook without cutting myself. jk. I'm still cooking (but Sarah can attest to the fact that I cannot be trusted with a meat cleaver for my own safety's sake :-).

They also give me a shot of Neulasta in the arm about 24 hours after my chemo appointment (I'll go in tomorrow for that) in order to boost bone marrow production. The last time I didn't feel it for about a week but then I had a terrible back ache that Mr. Wizard said was essentially my bones hurting due to the expansion of my bone marrow. Hurts so good!

I don't know the exact numbers, but my blood counts were good. Yay, bring on the chemo! I know that sounds sarcastic, but really... when I was waiting for my chemo, I heard one woman get "denied" her chemo because her blood counts were down. Ugh. That would suck to get all psyched up for it and then have to come back in a few days.

Okay, so I also met with Mr. Wizard. I liked this part. He asked how my spirits were (twice, and he even asked Rusty!), and I've got to tell you I'm firing on all cylinders when I get in there because I'm excited to be making another stride. He reviewed the side-effects I felt, and none of them were concerning. We also talked about my upcoming (hopefully!) trip to Chicago where I plan to run a 5k in the zoo with Jocelyn. We're really excited about having the monkeys cheer us on as we run past them. He's already told me that I can go to Chicago if I feel well (and the trip is scheduled for an off week), but when I told him I was running the 5k he told me not to overdo it. Chemo does damage the heart in more than one way, so he said if it was too hot outside I shouldn't run. I assured him that I could always walk it, then I let him in on a big secret...

"I don't run very fast, either. We're talking 12 minute miles, here..."

He smiled at that and I think we're on the same page. I have to take it easy, and I know that. Plus, I'm using the Galloway training method, which involves running for 3 mins. and walking for 1 min. the entire time, so I think I'll be fine.

But the best part of all was when he did the exam. He noticed that my lymph node has basically shrunk in half, and he also felt that the tumor shrunk to about 2 cm (compared to about ~2.5 cm). Woohoo! He seemed to be very excited about this (as was I), and he did say that it was a good sign that it responded to treatment early. I <3 that. Thank you, Mr. Wizard!

Next, the nurse told me that I could choose whatever room I wanted. Now, all of you at Stratus know exactly where this is going...

I tend to be a little territorial, or maybe it's habitual. I like to try new things, but I also like to have a routine. I eat the same thing for breakfast every day. I wear my hair the same way every day. Rusty and I typically go to the same restaurant (or one of the same few) for our weekly date night (though we do try new restaurants occasionally). And I sit in the same seat at the cafeteria every single day. In fact, back when I was at my old job before leaving and coming back, it was a "thing" (oh yeah, I've had 3 different jobs in the last 2 years but went back to the same company... that's pretty habitual).

The "cool kids" at work knew it was my seat, but sometimes there would be an infiltrator - (a nut-job, if you will) someone who didn't know that they could sit at any seat on the damn table except mine. Sometimes someone would tell the nut-job that they were sitting in my seat, sometimes not. Sometimes I didn't know the nut-job well enough to tell them to move (hey, I can be bitchy, but I don't pull that stuff on just anyone). Here's where it gets really weird... in that case, I would "fix it" as follows:
A little irrational, right? Since I'm back at my old job, they now have a sign on the back of the seat that indicates that it is, in fact, my seat (lest there be any confusion). Now that I've set the stage... back to chemo.

The nurse told me to pick any room I wanted, so I looked to see if the room I used last time (room 12) was available. I walked right past the end room with a nice view to see if I could keep the same one. It was taken :-( I went back to the end room and happily began my chemo.

Really, it's no big deal (cancer is mellowing me!), but it did give me a good opportunity to joke about my neurotic habits. We've decided that I should decorate the room that I like so that everyone knows it's mine. It already has a comfy chair, but it squeaks, so I'll need WD-40. Then, the sterile-looking privacy curtain can be replaced with hippie beads. I could also rearrange the seats so that I don't have to decide whether I want to sit next to Rusty or Mom... I'll put them both next to me. I'll also paint it a nicer color, maybe put in some posters, and I'll have a mini-fridge full of beer (for Rusty).

What would you put in your room to make it feel like yours? What irrational neuroses do you have?

Coming To a Blog Near You...

After yesterday's post, I wanted to keep things a little lighter (less scientific), clarify a few things, and introduce a new feature that I'm adding to the blog.

Sometimes when I don't write for a few days, I know people may wonder if everything is okay or if I'm sick, etc. Ironically, sometimes I don't blog because I'm feeling too good! So, I decided to add a status to my blog so that even if I don't have time to write a full-out post, you'll know how I'm doing. If you're reading this, it should be obvious (look to the right).

Also, I realized I may not have actually explained why I got the genetic testing. It's actually intended to guide my treatment. I wanted to know if I carried the gene mutation because my likelihood of getting a recurrence is much higher. So, we may want to be more aggressive with the surgery (i.e. remove more tissue). Or, I may be defiant like I typically am :-) Also, my doctors want to make sure that I have all the information I want and need to make my decision. We want to avoid me finding something out later that would have altered my choice.

Enough about that.

So, the other thing is that I may have been harsher than I intended when I wrote about what I don't want people to say. Let me explain... I want to hear the perspective of other people because I think it helps me make an informed decision. As this whole thing was unfolding, it actually took me a bit of courage to say that I didn't want to lose my boobs (if possible) because I thought it would sound stupid and vain. So that's why I'm sensitive about it. I know that living is more important than having my boobs, and I know I can get new ones. But I also know that reconstruction after a mastectomy doesn't quite look like Pamela Anderson. And I'm 27. I've barely even had them for half my life! It's a really big decision and I promise not to go into super-bitch mode if people discuss it with me.

I'm sure my dad remembers this time we were shopping when I was maybe 10 years old and I was trying to decide whether or not I should buy a $3 candle holder. I think I stewed about it for almost an hour. Seriously. A $3 candle holder. I am not very quick at this "making decisions" thing.

Now, at my meeting on Monday the genetic counselor gave me a new perspective I hadn't considered. She said I could always have more aggressive surgery later. Duh! It was like a totally foreign concept to me. I may not choose to go that route, but that's just an example of a viewpoint that was totally different and I'm glad she said that. My surgeon may not like the idea, though :-)

So, thank you all for offering up your good thoughts, prayers, comments, and your opinions. I love them all. And, if you care to weigh in, what do you think you would do? The rules are flexible... you can be me (27, married with no children, BRCA mutation) or you can be you (feel free to share what "you" means). Would you get the genetic test? Would you have a lumpectomy, a single mastectomy, a double mastectomy? If you got a double mastectomy would you have reconstruction, falsies, or maybe the tattoo option? (that one takes guts... for an example of it, see here).

All I Really Need To Know I Learned in 9th Grade Biology

SPOILER ALERT!!!! If you are related to me on my paternal side and/or you do NOT want to know the results of my genetics test, this post contains that information. I will warn you later on. It's at the end, so you can continue to read the rest of the post. I feel like I'm giving away the next episode of LOST or something, but I know that some people do not want to know about this stuff, and if they're related to me, I could inadvertently be giving them information they don't want to know. Okay...

Today I met with the genetic counselor who gave me the results of the BRCA (pronounced BRACK-ah) analysis. Before I go into the results, I want to explain exactly what this is all about. You may have heard about the BRCA gene mutation. Or maybe you haven't. It's a fairly recent scientific breakthrough where the mutation of 2 specific genes, BRCA-1 and BRCA-2, has been linked to certain cancers (most notably breast and ovarian cancer). When you have a problem with them, you say you "have the gene (or BRCA) mutation" as opposed to saying you "have the gene" (we all have the gene).

When functioning properly, these genes help prevent tumors and these genes are found in every cell of the body. We all have two copies of these genes - one copy from our mother and one copy from our father (the sperm bank, the milk man, etc). If you have the mutation, however, you now only have one functioning copy of the gene (or genes). That is, every cell in your body has at best one functioning copy. I guess if you were unlucky enough to have two parents with the mutation you could technically have zero functioning copies, but that would likely mean your parents came from Virginia and are cousins. That's why you shouldn't marry your cousin.

Anyway, due to certain factors (most likely environmental), the one working copy of your BRCA gene could also become damaged. These environmental factors could be things like smoking, drinking (oops), taking birth control pills (oops again), exposure to toxins, etc. It doesn't happen in all cells at the same time - it can happen in only some. Also, it depends on where it happens. If the one working copy of the BRCA gene fails in, say, a blood cell, nothing happens. But if it happens in a cell that makes up breast tissue, your body's genetic defense against breast cancer doesn't work.

It now seems obvious that having this gene mutation goes hand in hand with having a higher risk for developing breast and other cancers. I want to go over some statistics related to this in the
nifty pamphlet the genetic counselor gave me.

First is a chart showing the increased risk of getting cancer comparing the normal population vs. BRCA gene mutation carriers (numbers are percentages, and actually represent the worst case risk since there are ranges for the BRCA numbers)

Wow. Almost make me never want to drink again... almost.

The next chart shows how certain preventative measures can reduce the risk of getting cancer.

Most importantly, those who have the mutation or who are at risk of having the mutation will benefit from increased surveillance. This means getting mammograms early (preferably, earlier than the age that the youngest close relative was when she was diagnosed with cancer). For example, if your mother or sister had breast cancer at 35, you would want to be screened before age 35.

OKAY HERE'S THE PART WHERE YOU MAY WANT TO STOP READING!!!

Okay, still there? I figured that didn't work with the condom post, so I doubt anyone will stop reading now, either. ;-)

So, as I suspected I do have a genetic mutation of my BRCA-2 gene. Specifically, it's the germline mutation 2024del5 (whatever the hell that means), resulting in a premature truncation of the protein at amino acid position 599 (sure, whatever). I write that because I just wanted to clarify that the mutations are different - it's not a single mutation.

Any child I have would have a 50% chance of having the mutation. By default, my mother or father has it (given the family history, it's most definitely my father). And my sister has a 50% of having it.

Having this mutation means that I am much more likely to get cancer again, and the recommended treatment is probably going to be to have both of my breasts removed. I don't know if I really want to do that, so I'm going to do more research and think about it a lot more. I'm just letting you know now, please don't tell me that you think I should just "do it" (have a double mastectomy). I don't think it's that cut and dried.

Some people say that it doesn't matter if I don't have my boobs as long as I'm still alive. I know it's well-meaning, but I'll say right now that kind of offhand comment pisses me off (and if you HAVE said that to me, consider it your free pass :-). It's not vanity, it's identity. If you think it's an easy decision, you probably just think differently than me (and that's okay!). It's not that I don't value the opinion of my friends and family, in fact I really do. In the past few weeks, very many times I have heard something that just made me think differently and helped me form a well-thought out opinion. I don't want to discourage people from talking to me about it, I just want to make the statement that it's something I'm sensitive about.

And, finally, although this post may seem kind of gloomy, I wanted to give two more important pieces of information about the genetic testing lest you all call your doctors to get the genetic test (this is for you, Jules!). Only 5-10% of breast cancers are actually hereditary. Also, doctors don't recommend that everyone go out and get tested for the gene mutation. It's typically only ordered if you have 2 or more family members who have been diagnosed with breast or ovarian cancer before the age of 50.

One last bit of housekeeping... Are you still there? I realize that when I miss a few days you all get worried, but sometimes that just means I'm too well to blog! I'm working on a way to quickly update a daily status so that you know I'm doing okay. Stay tuned. Also, this week's chemo got moved up to Wednesday.

PSA

I have been meaning to write this post for a little while... it's the Public Service Announcement for self-breast exams. I can't take the credit for it - when I told my sister the news a few weeks back I wanted to make sure she took care of herself and did what she could to reduce her risk.

Her response?

"I know, I know, 'Touch your boobies!'"

And I do believe she made it her mission to let her friends know that it's very important for them to touch their boobies, too :-)

Most of us females have seen that pink placard that goes in the shower, showing the breasts and the arrows that's supposed to show us how to do a self-exam. That's all well and good, I never did them quite regularly for two main reasons...

First, they take a while! The placard suggests doing it in the shower because it's easier to move your hands over the tissue, but if you're anything like me you don't have that kind of time in the morning. If you do it right, it would probably take 5-10 minutes, and that's an extra 10 minutes I could be sleeping (or it's 10 extra minutes of running water running right down the drain for us hippies). So, my suggestion is to do it on a lazy Sunday morning in bed. I think you can get a better sense of things when you're lying down anyway.

Second, quite sadly, I never thought it made a difference. At one point I read an article on CNN.com that claimed there was no statistical benefit to performing self-exams. I can't recall if it said there was no statistical difference in detection, survival, or what, but that article gave me an excuse that I could tell myself when I didn't feel like doing it. I think that was a mistake. Luckily, I did still check every so often, and I did find the lump. However, if I had been more regular in my self-exams, I may have found it sooner. But I'm not beating myself up about it, because maybe it wouldn't have made a difference. Due to my age, the cells do grow much more rapidly, so it's possible it went from undetectable to detectable quite fast.

So, that's my PSA. When you think about the 10 minutes it may take and what it could save you, it's worth it. And even if there's no statistical benefit to doing self-exams, we all know that there are exceptions, and my case is one of those exceptions - it made a difference to me. So PLEASE PLEASE PLEASE - Touch Your Boobies, and when you do please think of me :-)

With that, I wanted to post a picture of me wearing my two most recent gifts. My sister knit me a scarf with boobies on it. Yes, that's right - boobies (I drew the line at the nipples - I told her not to knit those on that's just weird). I'm also wearing a t-shirt that Sarah gave me today with the words "Fight Like a Girl" printed on it. I can't wait to wear it to work! Every time you see me wear either one of these pieces you will remember my PSA. Take a good look at the hair because this week it's supposed to be gone!


P.S. Sarah and I ran 4 miles today - I am crossing my fingers and hoping that I will be ready to visit Jocelyn in Chicago at the end of May for the 5k through the zoo. I can't wait!!!