This is for Helen!

Here are a couple of photos of my most recent hair... making progress!

This is me and Beth, another young survivor diagnosed before 30. She's a mother of 2 and a really fun lady! I met her through the Young Survivor Coalition Message Board and we went through treatment at the same time. Her hair is longer I think (and not to mention cuter!) but this is what the growth looks like! We finally got to meet in real life at the Living Beyond Breast Cancer conference in Philadelphia last weekend.

This is me all made up for a breast cancer fundraiser in October. They colored my hair purple, but you can't see it, and now it's back to black (phew!). It was a fun experience but the event was really poorly put together. Anyway, my hair was really cool that day! And you can see my new boyfriend in the background in the mirror! :)

Where are we? And who is this?

Hey everyone! I have great ambitions to use this blog again for any number of things, but so far that hasn't come to fruition. Let today be the day that CarrieHatesCancer is revived!

So what has happened since we last spoke? Well, I think I said I'd gone to my six-month check-up. As it is, I'm very confused as far as time-telling and cancer go. My surgeon counts time from the first treatment action taken, which was chemo on August 4, 2008. My medical oncologist, who truly should have the final say, counts time from surgery, which wasn't until January 23, 2009. So by my surgeon's count, I've survived for about a year and a quarter, which sounds great! But by my medical oncologist's count, I'm not even at a year yet. :(

Anyway, I have an appointment coming up with my medical oncologist in December. That should count as my 9-month check-up, approximately. And for that appointment, I was due for my first mammogram since treatment. Generally I try not to stress too much about those sorts of things because it doesn't help. But no matter what, I've noticed that within a week or so before the appointment, I do get stressed and anxious. This time I felt really worried, for no particular reason. I just felt like I couldn't do this all again.

But without further fanfare, my mammogram went fine. I got the "all clear" quickly and was sent on my way. PHEW! They did both breasts this time, and in six months they'll do just the right one (the cancer one), and then in a year they'll do both again. Hard to believe that as a 27-year-old woman I have two mammogram appointments a year, but... well... I don't do many things normally anyway.

I still have the appointment sometime in early December, and I'll have to do bloodwork for that. So another chance for mild anxiety. But such is life. Err such is my life. I can't wait until I've been alive for three years post-cancer (if I make it that far...) because then the rates of recurrence drop dramatically.

This weekend I'm headed to Philadelphia to attend a breast cancer conference. Yet again, I've managed to score a scholarship so my flight and hotel are paid for! I'm so excited to see my "cancer friends" again! Through this horrendous experience, I've met some truly wonderful women. But more specifically, I have a good group of young survivors, most of us under 30. There are five of us, with different pathologies, stages, surgeries, everything. Totally different lives and lifestyles. But when we come together, we have a great time. I'm really looking forward to it!

There has been an interesting transformation in me. A year ago, I was miserably making my way through chemo, suffering and struggling. And since the end of treatment in May, things have been looking up, every day better than the ones before. Before, I was hearing from people what life was like after treatment. There's a discussion on my message board for young breast cancer survivors about "the new normal." There are a lot of women who will guarantee you that you will not be the same person you were before cancer. I found that to be terrifying, as I was pretty fond of how I was pre-cancer. And during cancer, there were so many struggles that I wanted to leave behind-- physical pain, fear, damage from radiation, etc.-- and I was scared I'd feel that way forever.

Well, let me tell you folks, it doesn't always end up that way. I feel today much like I felt before cancer. I'm different, that's true. I have a much broader perspective that has come from a unique experience. And now, here I am, maybe a year out, maybe not, trying to help others make their ways through the same experience. Another cancer-stranger-friend told me that she likes to read what I write because it gives her hope that she too will feel normal again. I can't even express how good that makes me feel.

It's a struggle to find your place and your role through cancer and after. It's sort of like being an adolescent again, figuring out who you are. But for now, I'm the same Carrie, just a little more experienced, a little wiser, and a little more helpful.

(I'm sure there are zillions of other things to say, but hey, MONTHS have passed so we gotta start somewhere!)

6 Months

Hello all! I still exist! And thanks to anyone who still reads...

On Monday, I went to see my medical oncologist for my 6-month check-up. Everything went well; it was actually a very boring appointment. My bloodwork looked great and my tumor markers are very low. (Tumor markers are, I think, proteins that cancer cells produce. If cancer were back, the markers would be elevated. So low is good.)

I just wanted to let you all know that things are looking good so far. I also saw my surgeon a little over a week ago, and things were just fine there too. My arm on my cancer side bothers me, though. The muscles are tight and uncomfortable, and I'm worried about developing lympedema on that side. My hand was slightly swollen starting late this winter, and now I feel my wrist and lower forearm are very mildly swollen.

Anyway, in other news, life is finally very good. I've been working and making money, which admittedly makes me feel really happy. I'm so happy to be back in Winter Park, with the same faces and the beautiful weather. The summer season is finally drawing to a close, at the perfect time because I was starting to feel burned out, and I'm headed to Chicago for the annual summer trip with my college girlfriends.

Finally, life is good. To anyone who may be reading this while struggling through the breast cancer battle, please know that it WILL look up.

:)

Phheewwww!

Just got the call today; my results are in and I do NOT have hepatitis C! Yay!

Tomorrow is my cancerversary, or the anniversary of the day I was diagnosed. I'll probably gab more about it later, but I'm tired from working a lot, and need to get ready to leave for New York City tomorrow! I'm meeting up with some of the wonderful young breast cancer survivors I've met and we're going to celebrate life. Should be a blast! Photos to come!

Which reminds me... I don't think I ever posted photos from the conference. Hmmm...

Next time!

A World's Full Turn

Well, here we are. It's July 10, 2009.

A year ago today, everything was starting to change. On July 9, 2008, my PA told me she was 98% sure that the lumps in my right breast were cysts. But on July 10, I went to the Breast Diagnostic Center, and had one of the scarier days of my life. I remember thinking I'd go and get an ultrasound and the whole appointment would take a half hour. But when the doctor wanted to see more and more images, and when she came in to do an ultrasound herself, I knew things weren't going to be OK. She had this tense, scared expression on her face. It was a year ago today that they told me that I'd have to have a biopsy, but that the masses in my breast were highly suspicious for cancer.

How does this happen to a healthy, happy 25 year old? I still wonder about this.

I'd like to think that a year later, everything is different and better. But a recent event has made me wonder.

The hospital where I had my surgeries just fired an employee who is accused to re-using needles on surgical patients in order to steal painkiller. The employee had hepatitis C, and now anyone who had surgery in certain parts of the hospital during certain period of time needs to get tested for hepatitis C. Of course, with my new rotten luck, my surgeries took place in the certain parts of the hospital during the certain time period. I spent yesterday in Fort Collins getting a haircut and a blood draw to be tested for hepatitis C.

Fantastic.

I can't help but feel like a small chance is nothing to worry about. The chances of a person of my age getting breast cancer is very small, but it still happened.

Mostly I feel like I just don't get a break. I was getting back to being pretty normal, but now there's this whole hepatitis scare. I feel like my life was normal last year, and now it's all... wonky. I wish that cancer had never happened to me. I wish I could go back to being like everyone else. I really do.

Anyway, the anniversary of my diagnosis is July 16, and that day I'm leaving on a jet plane to New York City to celebrate with some other young survivor friends. Some of us were diagnosed just a few days apart. I hope it will be fun. I'm pretty sure it will be.

More later. Enough today.

Some Thoughts and An Update (Warning: Long!)

Hello once again, to anyone out there who may still be reading. And also, thank you for continuing to check up on this site. I know my blog postings are becoming fewer and farther between, but I hope to bring updates still when something is happening. Or when nothing is happening…

Ultimately, though, this is a “cancer blog,” so I hope to keep the content related to my cancer adventure. For that reason, the posts are becoming rare. The things in my life are beginning to be less and less related to cancer, and that is a good thing. A very good thing. I hope that maybe someone may still stumble upon this blog and find it a helpful resource, and I also hope that you have found it a helpful resource.

That term “cancer adventure” takes me back to the beginning of this whole odyssey. I remember thinking last summer, before my diagnosis, that it was time for me to undertake a new adventure. After I graduated, I moved to Winter Park and had been living there for three years. That was the fulfillment of a childhood dream—to become a ski bum and ski as many days as possible. And while my some of my friends and peers were getting jobs and my parents were wishing I would go to graduate school, I was truly quite proud of myself for following through on my dreams (though humble and not particularly a service to the betterment of mankind). I was “living the dream,” as we so often say up here.

But then things started to take a turn for the worse. Well, maybe that’s a dramatic phrasing… perhaps a turn for the more mundane. I was entrenched in a very sloppy and unhealthy breakup that summer (which would lead to more sloppiness and unhealthiness later, with my diagnosis and treatment), and the novelty of my mountain life had just about worn out. Not to say I no longer enjoyed it; the life had just changed from a splendid thing of newness to well, everyday life. But with better weather. :)

At the beginning of every ski season, I would tell myself (and my parents) that this would be my last season, that I would get on with things and go get a life. And by the end of each ski season, I would say, “Well, just one more season, and then I’ll get it together.” Three years passed in this fashion and I guess I now know how castaways on Gilligan’s Island felt after their supposed three-hour tour.

It’s impossible to say how things might have gone because I’ll never know. Things went the way they went, and here I am now. There are those who say they think I may have continued a relationship with my ex-boyfriend had I not been diagnosed. I am ruminating over the idea that I may have moved on to another stage in my life, leaving the mountains behind. Who knows? But I do remember feeling that it was getting to be time for me to move on to my next adventure. I had a restless feeling and my life had gained a certain aspect of predictability. My first big adventure was living and studying abroad in France, my second was working and skiing in the Colorado Rocky Mountains, and my third was yet to be determined.

Unfortunately, my third adventure turned out to be cancer. I was originally thinking something more along the lines of Hawaii, or New York City, or Chicago. In the end, though, I didn’t end up having much of a say.

In the early days of diagnosis, I remember thinking at the time that I wasn’t really that stressed. But thinking about it now, I know that I really was. But in the face of all that stress, I also remember being optimistic in my innocence. What I mean by that is I had no idea what was to come, and so I thought, “Hey, this isn’t so bad.” It was in that naive but plucky spirit that I decided I would call this whole mess an “adventure.” I tend not to use popular words that I feel do not represent me or my attitude; I would never describe an awesome powder day as “sick,” for example. So the typical words “journey” or “experience” are not in my frontline vocabulary. I think this is because “journey” can include a certain level of pleasantness and willingness to go along, which clearly is an unfitting word in my opinion. And “experience” is so vague, though I sometimes use it.

Still, “adventure” is an appropriate word, I think. An adventure is a step into the unknown. On an adventure, one’s physical, mental, emotional, and spiritual strength is tested. I cannot think of a more apt word.

Anyway, the toughest parts of my cancer adventure are over, I hope. The most common question I field now is “So did they get it all?” I think a lot of people don’t understand how cancer and its treatment work. The unfortunate answer to that question is that I have no idea. We did our best to “get it all,” but we won’t know whether it’s all gone until either 1) it comes back, proving that we didn’t get it all, or 2) five years pass and it doesn’t come back. I’m not sure if all cancers work this way, but with breast cancer, if it doesn’t come back in five years, then you’re “cured.” This isn’t always true, but with my particular kind of cancer (triple negative breast cancer, or TNBC), it is very rare for it to recur after five years. And nowadays, doctors and researchers say that while the rate of recurrence is higher in the first three years for TNBC (and hence also more deadly), it’s pretty rare for it to recur after three years. And by five years, we can pretty much assume it’s gone and ain’t never comin’ back. This is the one advantage of TNBC. Breast cancers that are estrogen receptor positive are at risk of recurrence as long as there is estrogen in the body.

The measurement of five years is measured from my first surgery on January 23, 2009. So I’m about halfway to my first year. Tom Petty was onto something… the waiting may just be the hardest part. Actually, who am I kidding? The first part was pretty damn hard.

Anyway, I’m finding it challenging to think about things in the future. A year seems about as far away as possible. I sometimes feel paralyzed when it comes to making plans for the future because I have no idea what my life could be like. I know it sounds negative, but it has become a reality. In one year, I could be healthy and happy. In one year, I could be back in treatment for a local recurrence (the return of cancer, but confined to the breast). In one year, I could be going through treatment for metastatic cancer (the return of cancer in distant areas, such as bone, liver, lung, or brain). In one year, I could be dead. So it’s very hard for me to think what I want to do next. For most people, signing a one-year lease doesn’t seem like a serious commitment. When you’ve had cancer, it is. You have to realize that there’s a chance you’re going to have to break your lease. I was lucky the first time because my landlady/roommate is a good friend and it wasn’t a big deal for me to say, “Hey, I have cancer. I’m moving out at the end of the month to start treatment.”

All of this leads me to the important part of these posts, which is an update of what’s going on in the life of Carrie. This month marks three months since my second surgery. My doctors want to follow me closely, and that involves lots of check-ups. My medical oncologist will see me four times a year for the first year, then three times a year for the two years following, and then twice a year for the last two years. I think the surgeon and radiation oncologist will follow up with me, too, but not as intensely. Anyway, for all of these follow-ups, I had to get some scans and tests done. I had a bone scan to check my bone density, a PET scan to make sure things are looking good as far as the eradication of cancer goes, and blood work.

The bone scan showed that I have some osteopenia, which is a loss of bone density, but not as severe as osteoporosis. And thankfully, my PET scan was clear. The blood work came back looking very good too. All my doctors are pleased with my results and think that everything is looking good so far. Truth be told, though, it’s very early for anything to be wrong. But good news is good news, and I’ll take what I can get when I can get it.

After my appointment with my surgeon in Denver, I moved back to Winter Park. While I’m happy to be back, it wasn’t the easiest decision. I was already starting to get ready to move on with my life. And there was the ex-boyfriend situation. But there were also reasons I wanted to come back. I felt like I was robbed of my last ski season (even though I got 30 days on the snow), and I also didn’t want the reason I left to be an illness. I wanted to leave on my own terms. I knew I wanted to leave Fort Collins to hopefully restore some normalcy in my life, and Winter Park was the path of least resistance because I already had friends, a job (to start in a few weeks), and a place to live. And it’s also extremely beautiful here. The thought of moving to a strange new city seemed, at this point in my messy life, entirely too stressful. So here I am, back where I was.

The sensation of it all is very strange. With the warm weather, the appointments, and the shuffling from Fort Collins to Winter Park, I was flooded with memories of last July. It’s amazing how much a life can change in one year. And it’s so strange to be in the same places doing similar things, but be an entirely different person. Last year I thought that it wasn’t so bad, and that I could do it again if I had to. Now I think that it’s been bad but still know that if I have to, I can do it again. But there were times where I literally thought I couldn’t do it ever again. Ever. Again. God willing, I will never have to. But I am now wiser. Would I go back to exchange this wisdom for my carefree and innocent naivety? Of course. That was an easy one.

So the new challenge is to find how I fit in. On the Young Survivor Coalition Bulletin Board, we talk about the “new normal.” The new normal is what we call everyday normalcy post-cancer; it is not the same normal as before cancer. It’s an idea that I struggle with; currently I’m having trouble accepting that I will never be the same person I was just a year ago. I want to blend into my old life seamlessly. I want to be able to do the things I used to do and feel the way I used to feel. I don’t want to be “Cancer Girl,” and I don’t want the first thing people know about me to be that I had cancer. I want to feel the joy of being in my twenties and unattached (to a boyfriend, husband or children), and I want to feel like I’m going to live forever.

At the same time, I don’t think that it’s healthy to pretend like cancer never happened to me. I want to sometimes, and I justify that if it makes me feel better, then what’s the harm? But then I come back to earth, and I realize that even if it were healthy mentally, it’s still an impossibility. I have too many reminders. I’m not wild about my short hair (though it grows just a little every day). I have a 2-inch scar on my right breast. I have a scar from where my port is. I’m tired, and my knees ache. I’m sad, sometimes, still so sad that this has happened to me. And angry, too. These feelings don’t reign over my thoughts, but they’re there nonetheless, and I refuse to ignore them. And there are all these women I’ve come to know through this experience who have struggled like I’ve struggled. I value their friendship and their support, and I want to give back everything I’ve received. I care about what’s going on in their lives. To turn my back on cancer would probably mean I’d have to turn my back on them, and that’s just not going to happen.

It’s hard to say how this recommencement of life will go. I haven’t started working, so I have no way to measure how recovered I am. I haven’t been tested much because I haven’t been doing much. And while the terrain is the same, I am now a different voyager.

With some trepidation and my standard courage, I step forward. Stay tuned.

Finally!

I... AM... DONE!!!

More on that later! Gonna go have a fun day!

Medium-well

Remember me? Yeah, me neither.

Anyway, I know I've been really bad about keeping up with the blog recently. A large part of that is due to being out living my life a lot more. And a large part is me being lazy.

I wish I had documented my feelings better during this time. While physically it's been a bit easier, emotionally it's been difficult. My moods vary greatly from day to day, from hour to hour. Sometimes I feel so over cancer and ready to move on. Others I am stricken with sadness for myself. I still wonder how and why this happened to me.

I thought I should tell everyone to put their party hats away for another week. I know I had announced that April 24 was going to be my official last day of treatment. But... it's not.

You didn't think it would be that easy, did you?

My radiation oncologist has decided to add another 3 boosts (radiation directed at the "tumor bed," or where the tumor used to be, and not radiation to the whole breast, axilla or supraclav) to the end of treatment. And then the *#&%$ machine was broken for two days. So it's looking like the last day will be May 1. But who the hell knows what could happen between now and then.

I first made the goal of finishing treatment before the ski season ended. Failed. Then I made the goal of finishing before Susan's birthday. Failed again. Then I thought, well, if I could just be done by the end of April. Failed three times. I can't believe this.

My skin held up pretty well until Week 5. Now my armpit and an area near my collarbone are raw, red and feel like they're really sunburned. It's painful and uncomfortable. The doctor I saw yesterday thought it would start healing maybe this weekend, which was good. The nurse, though, said it could get worse over the next 2 weeks. I really hope not because it's not so great right now. I'm pretty cooked right now. But I'm calling it medium-well because I still have 6 more treatments.

My energy levels are sort of decent. I've been doing some fun stuff recently. Let me tell you about it, and we can pretend I'm not whining about radiation. :)

Last weekend was closing weekend at Winter Park Resort. I went up on Friday, in a HUGE snowstorm, to stay with some friends and get some final turns in. It snowed about 3 feet in 2 days, and the snow was amazing! It was nice to spend the time with friends and keep it mellow. Then on closing day I went out skiing, watched my friend try to snowboard across the icy Splash pond, and partied a little at the C-lot. And my skis and poles disappeared. :( They weren't my favorite skis, but I did invest a chunk on money on them. I think someone stole them; I'm still hoping it was an accident. Maybe I'll get a call soon from the resort's security office saying they got turned in.

Last night I went down to Denver to eat dinner with my friend Amber, and then we went down to Colorado Springs for a Roger Clyne and the Peacemakers show. The show was great, of course, and... at the end I got to shake Roger's hand! And we waited outside the tour bus, which is something I've never done, and I got to talk to him a little. AND HUG HIM! That was great. Amber said, "Roger! Will you please hug my friend? She's had cancer this year and your music has really helped her out." And he said, "Really? You're way too young for that." He said it in a really nice way. And he also asked if I was done with treatment, or is anyone ever really done, which was a pretty insightful question. It was the moment of a lifetime! I'm still pretty excited about that.

This weekend we're going to Denver to celebrate Susan's birthday. And on Sunday I am meeting up with other Colorado Young Survivors to have brunch at the Cheesecake Factory. Should be a fun weekend.

And then... to finish treatment. Hopefully forever.

Happy 100!

Hello again!

This is the 100th post on my blog. Seems like we should be celebrating, no? Happy 100 to you all!

Anyway, I guess there's not much to update on... I've finished 15 of my 30 radiation treatments, so I'm halfway done. The last day should be April 24, if all goes according to plan. But nothing goes according to plan it would seem, so I guess I won't hold my breath. So far my skin is holding up really well. It's maybe a tad pink now, but there's not really any tanning or burning or peeling or sores or anything. It's gross though-- they told me I can't shave my arm pit on the radiated side until my skin is healed because now would be a really bad time for a cut. So I have maybe 8 really long arm pit hairs. EWWW!

I got a cold last week, and that was a bummer. But it did give me a chance to get a lot of rest, do some reading, and take a lot of baths. So that part was nice... I'm feeling better now, though not completely well.

I went skiing this weekend on Saturday and Sunday. The snow was great, and it felt wonderful, as always, to get out there and move around. I also skied last weekend. I think by now I must be up to about 25 days on the snow. Which is great, really, because at the start of this all I didn't think I'd get even 5 days in. Just goes to show you that 1) the doctors don't always know what they're talking about, and 2) nothing gets in between me and skiing.

There are only two more weekends of skiing left in the 2008-2008 winter season at Winter Park. That makes me sad. I think that's why I was feeling pretty mopey when I was skiing today. I'm not ready for it to be over. And I still can't believe that my treatment has taken so long; at the beginning I thought I'd be done with a month or so left in the season. Nope. The season will close and I'll have my last 5 radiation treatments.

I'm still hoping to move back to Winter Park in May sometime. I guess I'm a little nervous that it's not the right choice, but I don't know what else to do. And I do know that I want to live my ski bum lifestyle next winter, so I may as well go back for this summer. It's beautiful up there, and it'll be nice to get back to "normal." I'm a little concerned that I'll be "cancer girl," and that that particular part of my reputation will precede my glittering personality. :) I guess in a way I wish I had kept things a little more under wraps. But it's too late now, and if people wanna act stupid about the fact that I have/had (I just don't know how to word that anymore) cancer, then they can go ahead. Just don't expect me to be around them for very long.

I really need to get a picture of my new hair up soon. I think those of you who haven't seen it since I was "baby butt bald" will be really surprised!

Ooooh I totally forgot I said I'd post some pictures from the conference. I need to save some to my computer from my facebook, so it'll take some time. Patience, please.

Tomorrow I have another appointment for personal training at the gym. I really like weight lifting, and I hope it's something I continue to do. Somehow since Dallas I gained a bunch of weight and now I'm working hard to take it off. Plus, I read an article that said that women who stayed within 5 lbs of their high school weight had fewer occurrences of breast cancer than women who have gained 20 lbs or more. I was really pretty thin in high school, and I know I've gained more than 5 lbs since then. I am not making it my goal to get back within 5 lbs because I think that's impossible, and probably unhealthy. But it would be nice to lose another 5-7 lbs.

I know I have more thoughts about various subjects that I would like to share with you, but none are coming to mind. And I have radiation at the ungodly hour of 9:00 a.m. (I know this is late to most of you, but give me a break; it's been a rough 9 months), so I'm going to bed early.

Thanks to anyone out there who still reads this junk! We've made it to 100 posts, not too shabby!

Live From the Trenches

Hello! Do you even remember me? I had to read my own blog to see where I left off. And it turns out today marks one month since my last post. Incredible! Like I say these days, time flies regardless of whether you're having any fun or not.

So what's happened? A lot actually! I don't know whether I should go in chronological order or in order of importance...

How about random order? That sounds a lot more fun, and a lot more like ME!

We left off at the day before the conference. As you all may remember (or not... I know you have bigger things on your mind than me... although why I have no idea... ha!), I hadn't had my period since August due to what we call "chemo-pause." Chemo-pause is chemotherapy-induced menopause, and it's very normal for a woman undergoing chemotherapy to slip into menopause. You might remember me whining and groaning about having hot flashes all the time, and how it was very difficult for me to sleep. Well, as chemo wore on, the hot flashes diminished quite a bit, and I think (but can't remember exactly) that the last couple months were hot flash-free. That was nice.

The concern was that my doctor said she was sure my period would come back. Well, actually, that wasn't the concern. It was that she said there was an 80-85% chance it would. Those are good odds, yes, but 10-15% is still a good chance it wouldn't. Anyway, I tried not to stress about it because I have no control over it, plus I have no interest in having children anytime soon, if ever. I figured, though, if it were going to come back, it would probably come back at the least convenient time.

Well, the day before I left for Dallas for the conference, guess what happened? Yep, the ol' period came back. At first I thought there was something wrong with me! Ha! But anyway, it was nice to know that my body has regained yet another function, albeit not an enjoyable one.

I am amongst the menstruating once again.

Speaking of the conference, you may be wondering how it went. I think I honestly needed this entire month to process my feelings about the conference.

I left Colorado feeling excited to go, but not thinking it was going to be the time of my life or anything. And I came home to Colorado TOTALLY exhausted, sick of cancer, and ready for a little space to myself. In the end, however, it was a really cool experience.

On Thursday, I flew to Dallas, and it turned out that a fellow breast cancer young survivor friend of mine from Colorado Springs bumped her flight time up to fly with me. I ended up sitting right in front of her. That was fun, plus I had some people to share a shuttle with. I had taken a pill because I hate flying, and then she gave me the rest of her margarita. Ooops. Suffice it to say, I don't remember much of the shuttle ride. The rest of the day was spent sort of wandering around and meeting all sorts of women whom I knew only from our online correspondences. It was wonderful to meet so many people at once, but also pretty overwhelming. And I was walking around in my blue wig, so lots of people recognized me that way, but I wasn't sure who everyone else was all the time. We went out to a fun restaurant for dinner as a group of maybe 30, and that was pretty nice.

The conference didn't officially start until Friday. I registered, got a bag full of interesting goodies, and went to a seminar about the environment and cancer. It was a pretty interesting session. And later that night we went out dancing at a cowboy bar. That was a first for me; I've never seen people dance around in a ring like that. I rode a mechanical bull and met a very interesting young man. All in all, a pretty fun night!

Saturday was an exhausting day. We had 4 seminars to attend, and they started pretty early. I learned, talked, heard, read all about cancer ALL DAY. That was a little much. And at this point, I realized it had been hours and hours since I had any time to myself, by myself. Not that it wasn't great to be around all these fantastic and fun and beautiful and smart women all the time... but as of late I do have a lot of down-time to myself, and I was starting to feel a little burned out. The seminars on Saturday weren't as good, either. The one I had been looking forward to was about Triple Negative Breast Cancer, which is what I have, but the presenter talked very quickly and as if she were talking to another clinicians. I had no idea what she was talking about, plus my mind was already raw from all the rest of the cancer thinking. I was disappointed that the talk wasn't better.

Saturday night was a blast though! We had a dinner and dance at the hotel. Dinner was... questionable... let me say that a grilled chicken breast needs to have sauce, and no, mayonnaise is not an acceptable sauce. Anyway, the dancing was really fun because it was just a bunch of girls in different crazy wigs, bald, or with their own new hair, getting silly and having fun. I had the best time!

Oh yeah, I might mention that I was sharing a hotel room with three other girls. It was like a college spring break all over! They were all so cool and so nice. I wish the four of us had gotten more time to hang out. Oh well, I'm planning on going to New York City and Washington, D.C. to visit some of them in July, should funds allow!

On Sunday, I slept in. I needed it. And then I said goodbyes to all the people I had met. I was very ready to go home, even though I had a great time. I think that because I had had such a long break from chemo, cancer was on my mind a lot less before the conference. And being at the conference brought me back to having cancer on my mind ALL THE TIME. That I found really difficult for me. I didn't like thinking about cancer constantly, and talking about my cancer and other people's cancer and cancer in general incessantly. It was really draining, and with the skiing before, I got home totally exhausted and tired. And truly overwhelmed by it all.

Blogger is really stupid in the way it makes you upload photos. But next blog, which I PROMISE will appear sooner than a month, I'll include some pictures and you'll get an idea to why I came home so tired. ;)

What else? Oh, I've had two great visitors since we last spoke. My brother came to visit from Buffalo, NY, and that was really nice. We got to spend his birthday with him, and he, my sister, and I all went up to Winter Park for a ski trip. The Monday of our ski trip I skied GREAT, hit 11 runs in maybe 3.5 hours, and just totally killed it like I used to. Then on Tuesday, it snowed a bunch, which normally would be a good thing. But I was worn out from the day before, and honestly I'm not that great of a powder skier. And it was flippin' freezing out. I was miserable and falling left and right. I started to get scared I was going to hurt myself, so I just quit. I was so frustrated that I wasn't having any fun. So I took my boots off and went to lunch at my favorite restaurant! Ha!

Also, one of my favorite people came to visit from San Francisco. La Heather! It was so wonderful to see her, and she was here for 5-ish days. I wish I had been more energetic for her visit but I was really starting to feel tired with all the skiing and the extra activity. But it's always great to spend time with Heather, and I think she understood that my energy level wasn't what is once was, and that I like just hanging out doing nothing with her anyway. What a treat!

Also, some time starting towards the beginning of March, I started working out again. I think it's made a difference in how I feel, and I usually feel a little more energetic after a workout. With Dallas, my brother visiting, and Heather visiting, I managed to gain maybe 8-10 pounds, which is gross and I hate it. So now I'm working on getting back to a normal weight. I've also started strength training with a personal trainer (I know, fancy!) and that's going really well. Lifting weights reminds me of skiing a little bit because it's something you can do with a friend if you want, but it's just as good alone. And it's an individual challenge that you can improve upon every time. I really like it so far, and my trainer is really nice. She's supposed to be a little bit initiated with cancer stuff, but mostly I think she's clueless. Anyway, she did a really challenging workout with me yesterday and I'm practically hobbling, limping, and shuffling around. And I'm supposed to do it again tomorrow! Aye me! I feel a little stronger, a little less flabby, and like I have a little more endurance. That is, I feel a little more like myself. And that's a good thing.

And the biggest news, as far as CarrieHatesCancer goes, is that I've finally started radiation. After my brother left and the radiation office still hadn't called, I called them to make sure they didn't forget me. The woman on the phone said she was just lifting up the phone to call me. Whether or not I believe her on that one is up for grabs.

Anyway (boy this is getting loooong) I will have 30 treatments, 5 of which are "boosts." I guess boosts go directly to the surgery spot, and are "just electrons," whatever that means. The woman on the phone described it as "dessert after a big meal." I like the sound of that! As of today, I have had 8 treatments. Something is making me feel tired a lot, and I'm guessing it has to do with radiation. Although I was getting pretty damn tired before I started, so who knows. My body's been through a lot, and it's no small wonder I feel exhausted most of the time. By Week 3 or so, most people start to notice skin reactions (as in burning, peeling, redness, fun stuff). So far, at the end of Week 2, there's nothing to report.

I go to radiation EVERY day Monday through Friday, at 9 a.m., which is super early for me (I know, it's obnoxious, but I like luxury's lap and so I live there). If all goes according to plan, my last treatment will be on April 24. Guess who's counting the days? There is one good thing about radiation, though. The doctor's office has cookies out every day, and almost always there are two different kinds. Yes, even at 9 in the morning I indulge myself. I deserve it.

I've really resented being back into treatment, but now that it's been almost two weeks, I'm getting used to it. It was just a really long break from this crap-- my last infusion was Dec. 30. I really feel like everything took extra long in my situation. Some people get through treatment in much less time than the 9 months it will have taken me. But we're all different, and there's no magic timeline that we all fit on. It was hard to go back to feeling mediocre all the time and having to face the reality of cancer again. But radiation is nothing so far in comparison to chemo. And sometime soon I'll show you all the hair I've grown!

Speaking of my hair, every day I wake up and it's pushed itself into a mini faux-hawk. I look a little like an emo skater punk girl and little like Mr. T. But hey, it's hair, right?

Now that we're all up to speed, I feel better. And tired. So it's off to bed with me, and I'll talk to you soon, I promise. And there will be pictures!

(Sorry this post was sort of a mess. I would go back and fix it, but seriously, I'm tired. So excuse all the run-on sentences and stuff. Thanks!)

A Break From Reality... And Back Again...

Every time I get the chance to go skiing, I totally relish it. It's such a welcome break from my "cancereality" as we may call it. It feels great to do something physical, and being outside in the snow is truly therapeutic for me.

Anyway, Monday and Tuesday I went up skiing in Winter Park and stayed with some great friends, Mike and Beth. I've worked with both of them in restaurants back when I lived in WP, which feels like eons ago. Mike was actually one of the first people I met. Anyway, they're both amazing cooks, so you can imagine I was spoiled by the food they made me. I thoroughly enjoyed some lasagna and breakfast burritos, plus they got a case of Bud Light for me and took care of my drinks. It was great!

The skiing was really fantastic on Monday. I took some of the best turns I've taken all season, plus I got to ski with my buddy Marty for the first time. Turns out, he likes to ski moguls too, and we had a great, albeit short, time! Then on Tuesday I skied terribly. We'd gotten a bunch of new snow, but it was about 39 degrees out, so it was wet and heavy. I gave up and went to visit some friends and have a Hurricane or two, as it was Mardi Gras and all.

In the midst of it all, I got a call from my oncologist's office. That was scary because it was after 5:00 and I had no idea why they'd be calling me. I was worried that they had rechecked my brain MRI and found something. In the end, though, it was to discuss radiation to my supraclav. My oncologist, unlike my surgeon, was all for it, and had discussed it with another radiation oncologist at the office I go to. My normal rads onc was out of town on a personal emergency, so she had talked with his associate. It turned out though that I'd be meeting with a "substitute doctor." So my medical oncologist agreed to talk to the sub as well.

We went back to M&B's place to change clothes, and then went out to celebrate! I had a great time dancing and seeing friends. Wahoo!

I had to head home on Wednesday morning because I had an appointment with the substitute rads onc, Dr. A. Dr. A. is a retired rads onc who was also a professor at the University of Oklahoma. He had a fantastic bedside manner and truly took the time to help me try to make a decision. The difficult thing about the decision of whether or not to radiate my supraclav is this: the risks are small but severe, and the benefits are not guaranteed. The risk is that the radiation could damage a nerve bundle in my shoulder causing my entire right arm to go permanently numb. There's also an increased risk of lymphedema. And there will be increased damage to my lung, but they tell me that it won't be noticeable or make a change in my lifestyle. The risk of losing feeling in my arm is very small; it's been approximated from anywhere between .5-5%. According to Dr. A., he had never seen it happen to any of his patients in his 38 years of experience. And as with anything, there is no guarantee of any benefit.

Having the control and freedom to decide on this makes me feel like I DO have control over my treatment. But as I am not a doctor, it is very difficult to try to make a medical decision for myself. I'm leaning towards doing it though. The rads oncs seem torn, but because I am so young, it seems like a good idea. I want to give myself every chance I can, and I don't want to regret NOT doing something that might help. There's also the idea that if cancer were to grow in my supraclavicular lymph nodes, a tumor could damage that nerve bundle, also causing my arm to go numb. Damned if you do, damned if you don't.

"Where are we going? And what am I doing in this handbasket?"

The reason there is such a debate over whether or not to radiate my supraclav is that they usually do it if there are three or more lymph nodes "involved," meaning containing cancer. For less than three, they do not radiate this region. But, in my case, because I'm always special about things, the tumor in my node had broken through the lymph node capsule, which is... sorta scary. And like I said, I am a youngster, so we want to give me the best chance possible.

In the end, Dr. A. and I agreed that I should take some extra time to think about it, and in the meantime, have myself mapped out as if I'm going to do it. Then if I decide against it, it won't change anything. Which leads me to the next thing...

I got mapped for radiation finally. To do this, they stick you on an uncomfortable table and slide you in and out of a CT machine. This is purely for mapping and not diagnostic, so I didn't have to drink anything gross or be injected by anything. Then afterwards, I got my very first tattoos.

Now, before anyone gets too excited, these tattoos are TINY and are used to match my body up with the machines. A laser light will need to be matched to these black dots every session to make sure my body is in the perfect position. You don't want radiation going just anywhere! I was against them at first, but in the end, they truly are tiny and they didn't really hurt. The gal who did them told me she was famous for making them REALLY tiny. It was true; the two on my sides turned out so tiny that she had to redo them.

I was scared thinking she'd have a big tattoo gun, but in the end they just put a dot of ink on my skin and then stuck a needle in. No biggie.

I guess now they're working on my treatment plan and will call me to tell me when I can start. I think though, I'll end up telling them when I want to start because Big Brother #2 is coming to town to ski with me, and I don't want to worry about radiation until we're done skiing.

Yeah, I have a one-track mind. Skiing is my passion, what can I say?

I leave tomorrow for Dallas for the Young Women Affected by Breast Cancer conference. I get to meet all these women who have comprised my online support group. I'm really looking forward to it! Because of my age, a normal support group had very little appeal to me. I lost myself to this network of women closer to my age, and we all support each other. It's been incredible to have a life-line of people who know what I'm going through, and how hard it is do it at this age. Hopefully I'll learn a lot and have a fantastic time! I'm headed to Denver tonight to stay with Amber so I don't have to wake up so early tomorrow!

What a Week!

Hello again! I'm sorry that I keep slacking off with the upkeep of my blog. I think because I'm feeling better, I blog less. I think back to my days of chemotherapy treatment and remember how this blog served as a lifeline for my mental health. I hope it means I'm mentally stronger now because I feel the need to blog less. And admittedly, the further along and the closer to the finish line I get, the more I dislike talking about cancer. I used to obsessively check the message boards at the Young Survivor Coalition, blog about my cancer adventure, and talk about cancer all the time. I finally feel like my thoughts about cancer are no longer constant.

Anyway, I'll fill you in on what felt like a long, crummy week of doctor's appointments.

On Monday, I had two appointments. The first was with my medical oncologist, Dr. M. This was the first time I'd seen her since surgery, so we were going to talk about my pathology results and prognosis. She seemed disappointed that the pathology report found a lymph node positive for cancer. That means that while her original staging was based on a guess, the chemotherapy did not downstage me. She used a computer program called Adjuvant Online to assess my prognosis for cure. The program isn't really the most accurate picture of my prognosis because I did chemo before surgery, but apparently it's the best and only tool we have. So according to the program, I have a 70% chance of making it another 5 years, disease-free.

As you can imagine, I was kind of down after hearing that. It was the number I had in my head approximately, but hearing it officially was a tad depressing. Yes, 70% is better than anything below 69%. But it still isn't as good as 80%, or 100%. Feeling that three times out of ten I'm dead meat was scary and disheartening. But I have to remember that I am not just a statistic and be happy for the 70%.

It really made me realize how little we still know about cancer. When I was asking questions about this 70% and wondering what was going to happen, my oncologist literally crossed both her fingers and said "we hope." Moving forward from a superstitious finger-crossing and a 70% chance of being alive at 31 makes a girl feel a little uncertain.

I also mentioned an issue I'd had a few weeks before with my peripheral vision. I went out and partied a little in Denver with some friends from high school, and the next day I realized there was a chunk of my vision missing in the periphery. It was freaky! But it came back after I ate and rehydrated. The doctor wanted to be on the safe side and ordered an MRI of my brain. She said it was very, very, very unlikely that anything was wrong, but given the whole cancer thing, we're playing it safe. The brain MRI was scheduled for Wednesday. Scary stuff, but I tried not to worry.

Anyway, I didn't have much time to be glum about it because there was more cancer business to attend to. I had my first consultation with my radiation oncologist on Monday too. This doctor, also a Dr. S., was very nice and very informative. I'd heard so many women complain about their radiation (we call it "rads" for short) oncologist, so I was worried mine would be a brusque jerk too. Instead he was a very friendly, informative and flexible doctor. For the first time in treatment, I felt like I really had control over my treatment and had lots of choices.

We discussed some different options for radiation, but we came to the conclusion that standard external beam radiation would be the best option for me. We talked about the side effects, which primarily are fatigue (what's new?) and skin irritations. We're also talking about radiating my supraclavicular region because apparently the cancerous lymph node had cancer that broke through the capsule. I scheduled a mapping CT for this coming Wednesday, and rads will probably start sometime in the first weeks of March. I hope to be totally finished with active treatment by then end of April.

I had my brain MRI on Wednesday, and by Thursday I got the results. The woman on the phone said, "Your brain looks completely normal." No one has ever said that to me about my brain! That was a nice relief.

Also on Thursday I met with a physical therapist to become educated on lymphedema, or LE. I learned that developing LE is a lifelong risk. I also learned that I shouldn't allow it to run my life. For those of you who don't know what lymphedema is, it's a condition caused by the lymph fluid getting trapped in parts of the body, in my case my right arm, and not being moved out because I have had 9 lymph nodes removed. Any injury, or nothing at all, could cause LE to happen. Essentially, I need to reduce my risk factors, be vigilant in my watch for any swelling, and should something occur, be prompt at treating it.

On Friday, I went to Denver for my follow-up appointment with my surgeon. It was a very brief appointment, and I finally got the bandages taken off my re-excision wound. The wound looked great, and Dr. S. was really please with the progress. I asked her about radiating my supraclavicular region, and she said I shouldn't do it. Dr. S. always has a brighter view on my future, so it's nice to see her after I see Dr. M.

So that was my week. It's such a drag to have to go to all these appointments, especially after having such a long break from them. But... this is my life, and as the Serenity Prayer commands, I must learn to accept the things I cannot change.

Side note: I started writing this a long time ago, and now it's about a week and a half later. But to keep my posts approximately in the time frame of actual life, I'm going to post it as February 21 and write another update.

Sorry I've Been Slacking! And No More Surgery!

Hey everyone! I really have to apologize for slacking on my blog. I keep meaning to update everyone, but it got put off. Sorry sorry sorry!

So first off, let me tell you all that my second surgery was a success. I had a re-excision on Monday, and on Wednesday (I think?) I got the good news that the margins were clean and clear. The medical assistant said, "You won't have to have any more surgeries, unless you need your appendix out!" Let's hope she's right!

Tuesday was a little painful because I didn't want to take any more percocet. I just really hate the way painkillers make me feel! How people get addicted to them I'll never know. Anyway, the pain has been very minimal, and I've resumed my physical therapy exercises. Things are feeling really good right now, so that's great.

For whatever reason, my breast looks a lot better this time around. You'd think it would be flatter from taking out more tissue, but it looks... bigger! I hope that lasts!

I really need to get Susan to take my picture again because my hair is pretty noticeable now. It's not long, and it's not thick... but it's THERE!

Tomorrow is sort of a big day. I'm definitely not looking forward to it. I have an appointment in the morning with Dr. M., my oncologist. We'll probably go over the meaning of my pathology report. I'm thinking she's going to give me an official prognosis, meaning the statistics regarding my likelihood of 5 year survival. Icky. And in the afternoon, I meet with my radiation oncologist for the first time. I wonder what that will be like. I'll be glad to have it out of the way and to know more about what's going to be happening. So think good thoughts for me tomorrow because I'm sick of going to the doctor now. Which I think is pretty fair, since I've been doing it for 7 months. Tomorrow marks 7 months since diagnosis.

Today is actually a special day. You see, 26 years ago today, a little baby arrived in Denver, all the way from Seoul, South Korea. And when she landed, she met her new family and she started a new life in the United States. That lucky little baby was me. Today is what has come to be called "Carrie Day," a day celebrating the anniversary of my adoption. So Happy Carrie Day to you all! Hope you treated yourselves nicely!

Now that we have the updates out of the way, we can move on to the reflection part of the blog. I've been thinking a lot about the transition from "cancer girl" to Carrie. It's so crazy that things happened to fast and so unexpectedly. In 8 months, my life changed A LOT.

On the YSC message boards, we talk about the "new normal" a lot. We talk about how we'll never go back to being the women we were before cancer, but that we find a new normal, a balance that takes into account everything we've been through. I will never have breasts without scars, and I will probably never again feel like I'll live forever. I'll never be young and invincible. And my surgeon mentioned that she thought I might have to do stretches every day for the rest of my life because the radiation might mess up my muscles in my arm. All of this is will certainly contribute to my new normal, which doesn't sound very normal at all.

But slowly, ever so slowly, the evidence of this difficult time is disappearing. When I think about it, I get this visual of a Jolly Roger drawn in the sand by the sea. And with each wave that laps against the sand, the picture washes away just a little bit more. My hair is coming back slowly, and the darkness in my nails is fading. Eventually the fact that I did a tango with cancer will not be visible, and the people I meet will have no idea what I've been through. I will look normal. But we've yet to find out if I'll feel normal.

I've noticed, though, that I find myself thinking, worrying and obsessing about cancer a lot less these days. I didn't think it would be this fast. I feel so ready to move on with my life. Actually, I should clarify that statement. I have no idea what I want to do with my life. But I am absolutely ready to move away from this part of my life. When I'm through with treatment, which, mind you, will still be another two months probably, I want to move back to Winter Park. I feel like my time there was cut short. I feel like I need to go back so that when I decide to leave, it's on my terms. And of course, I want to ski another season because cancer stole this one from me.

What scares me is the creeping thought that I'll get back to the life I had pre-cancer and not be happy. I do feel very different and very changed. And if skiing doesn't make me happy like it used to, then... who am I? I feel like I don't know myself very well anymore because I've changed.

I feel conflicted in how to proceed. When doctors tell me negative things, and I read negative things on the YSC message boards, I just want to be the exception. I want to believe that these various bad things will not happen to me. I want to prove everyone wrong. At the same time, I hate to set myself up for disappointment. I don't want to believe I can go back to being normal and then have to deal with all the stupid effects of cancer and its treatment. I guess what I'm trying to say is that I don't want to live in denial of the after-effects of treatment, and I don't want to have unrealistic expectations. But I DO want to try my best to go back to being a normal 26 year old.

Part of that is getting my body back in shape. I have gotten really flabby and tired, and now I'm ready to tone up my muscles, gain some strength back, and get in shape so that when I finally hit the snow, I'm ready to rip! The only problem is that I have to keep healing from surgery and am not allowed to do any "strenuous physical activity" for another week. But this has become a major goal for me. And I finally signed up for the free 6-month gym membership I got because of cancer. And paid for three 1-hour sessions of physical training. So as soon as I get the go-ahead, I'm going to go ahead!

I'm tired! I'm going to bed. I hope I said everything I wanted to. I have no idea.

Oh wait, two more things!

1) Thanks so much to Nancy! I got your wonderful card! It was a great surprise on a pretty boring day. And thanks for dinner in Dallas! I'll make sure to eat something REALLY good!

2) I'm going to Dallas in only 11 days! I'm going to meet all these wonderful women who have been a special support group in these hard times. I'm excited!

Here Comes Another Song About Mexico...

So Christmas was a REALLY long time ago, I know, but I finally loaded up all my pictures from my family's trip to Mexico. We all had a great time, and it was nice to look back on the fun times we had.

I took my camera with me only a few times, so the pictures I have aren't exactly representative of everything we did. Maybe if I get some pictures from other family members, I'll post them.

But without further ado, here are some photos from Playa del Carmen, Mexico!

Here's Mom getting searched by airport security. When she

wears her sunglasses inside, she looks like a movie star!

Here's Mom, Dad, Susan and me eating breakfast

at the airport before we depart. Yum!

The next photos are from a dinner at Yaxche, a Mayan restaurant. There's a beautiful patio in the back where you can eat outside. But it's very dark. You can see Mom and Dad using flashlights to read their menus.

David, Cristi and Michael are deciding what's for dinner.

Actually, David is smiling for the camera!

Here's Dad being a goofball, his typical self.




And me, drinking a delicious mixture of juices. Just juices, I swear!




Mom and Susan, smiling pretty!



And here's all of us, except Dad, who's taking the picture,
and Cristi, who got covered by Michael.

Here's a spotlight on my sister-in-law, since she got

covered by my brother in the last shot.

Here's me being silly. I was trying to imitate this really bizarre

statue across from our favorite restaurant.

And here's Susan being silly, kissing a statue near our house.

Susan and Carrie enjoying strawberry margaritas at Babe's.

This restaurant specializes in Thai food AND Swedish Meatballs.

Go figure.

And Dad and Michael enjoying their mango margs...

Mom enjoying a fine bottled water, and Dad with his margarita!

With our last remaining pesos, Susan and I bought these cool

handmade wool turtles. They're cool!

Here's out kitchen, with the housekeeper Marcela washing dishes.

The living room...

The room Susan and I shared...

Susan took this photo from inside, looking out our magnificent deck!

She also took this one. Hello Caribbean!

The patio, with Cristi, Dad, Mom and Susan...

The palapa covering the entrance to our house! (De nada, Palapa!)

A side view of the house...

Another view, to show you how close we were to the sea!

The front of the house...

This photo shows my sister-in-law Cristi, as well as the house we stayed

in the last time we were in Playa del Carmen.

The palm trees between our house and the beach.

Well, I hope everyone enjoyed a quick trip to Mexico. Remember the sun; it will be back again!

'Twas the Other Night Before Surgery

Guess who? YES! It's Carrie! And she hates Hates HATES cancer!

Here we are again, the night before surgery. Last surgery I was all jittery and nervous. I was scared of the anesthetic and scared for the pain. I was scared for the outcome, too. But tonight, I look at my upcoming surgery as an annoyance. I wish I didn't have to have it, but I know I do. So... I'm gonna suck it up and blast through it. I just hope there won't be any ridiculous complications like last time. Five wire localizations, three attempts at an IV... not fun.

I have only 12 more minutes of water drinking and eating. Then I have to fast. I hate fasting for these stupid things.

I've been trying to be better about doing my dumb physical therapy exercises. I'm supposed to do them five times a day. And given that I don't really have anything else to do, this should be easy. But they're REALLY boring. Happily, though, they don't really hurt anymore. I feel a lot less of a stretch now. For a bit, my progress wasn't improving and I was getting pretty grouchy about that. But we seem to be heading in the direction of normalcy once again. I really hope that this next surgery won't interfere with the rehabilitation of my right arm. Because this bitch has some skiing to do! (Whenever Madame La Surgeon says it's OK, of course.) I hope to make it out again in March, but we'll see what the doc says.

I finally took my bandages off a couple of days ago. Things are looking pretty good. I was really scared to look at my breast at first, in the days immediately following surgery. But now things have settled, and though I will probably never be symmetrical again, it's not too awful. From straight on, you wouldn't really notice the unevenness (unless you were looking for it). The scar will certainly give away the fact that I have had surgery. But so what? I have had surgery. My profile leaves something to be desired, but it's not that awful either. It's not like they were perfect before, anyway.

I find I still haven't regained the energy I once had. I know it hasn't been that long since I finished chemo, and recovery is a long road. But I'm becoming more and more impatient with how slowly everything moves. I want to be strong and I want to be able to run around, but I still feel so week. I've been too sedentary in the past few weeks, I think, but then again, who can blame me? Anyway, I went for walks two days in a row, and on the third day my legs and feet were aching like crazy. I'm starting to feel that "26 year old trapped in a 90 year old's body" thing. And I don't like it. I signed up for a free 6-month membership at the gym, so I hope to be getting stronger and healthier soon. Wouldn't it be amazing to come out of treatment with a better body than I had before? Dare to dream Carrie.


In other news, I finally booked my flights for the Annual Conference for Young Women Affected by Breast Cancer in Dallas, Texas. I was going to go to Austin afterwards, but truly, funds are limited. And I'm saving up to go to Circus Mexicus! Anyway, I'm really looking forward to going to this conference and meeting so many of the women who have been my online support group. Plus, it's about time I got out of town again. I also have a Roger Clyne solo show to look forward to in about two weeks.

So tomorrow is another day in this whole cancer process. Let's all hope together that we get it all this time. It helps to know that I'm not going to be alone in my suffering... my darling online friends Catherine and Jen will be doing their own treatment things tomorrow too. It's terrible to think there are more 20-somethings out there with breast cancer, but there are. I am not alone. And their support and emails have been really wonderful in the past months.

Let's try to check another thing off the list tomorrow. Surgery, check. Next stop, healing. And after that radiation. And then...?

And then, get a life.

Late Night Update

So it's 3:00 a.m. and I'm finally ready to go to bed. What am I doing up so late?

I am trying to do some writing therapy. When I have problems, it usually helps me to write them down. Otherwise thoughts just ping around in my head, bouncing around and making me feel nuts.

My problem tonight is that there are two people who really let me down through all of this. And sometimes I'm really angry about it. I am especially angry at one person specifically. And I don't like to be angry. I want to just let it go. But it's very difficult. I think I find it hard because neither of these people seem to think they've done anything wrong, and it's hard to forgive someone who hasn't really apologized.

(Just so we're clear, it's not anyone in my family. I'm pretty sure these two people know who they are, and I honestly doubt they read this blog anymore. They don't care.)

Anyway, I just spent the last long time writing two separate posts, which will probably never be published, addressing what these people did and why it hurt me. I hope this will help me feel better about things. Otherwise I may need a counselor. Or a bat. Just kidding.

On a lighter note, I wanted everyone to know that I'm feeling much better these days. I have come to terms with the additional surgery. Things happen and if you can't change them, don't fight them. Save your energy for the fights you can change. This is my outlook, or at least the outlook I strive to live by. It's kind of like the Serenity Prayer:

"God grant me the serenity to accept the things I cannot change; courage to change the things I can;and wisdom to know the difference. " --Reinhold Niebuhr

Anyway, I'm moving forward with life. Or I'm trying to.

Yesterday I went down to Boulder to meet up with a group of other young survivors. We ranged from 26 to 40-something. We had some dinner together and talked. It was really nice to meet some other people who have been in shoes quite similar to my own. Everyone was cool. I wore my blue wig so they'd recognize me from my online signature pictures. It ended up being a great time, and we closed down the restaurant! Hopefully we meet again.

Here's a picture one of the girls took (I hope this is OK)...

I'm the blue haired one.

I also have the Young Women Affected by Breast Cancer conference coming up at the end of the month. It's in Dallas. I may go visit Austin afterwards, or I might just come back home and get ready for radiation. Having something like this to look forward to really helps me push through the weeks upon weeks of treatment. I think the conference will be a blast, and it will be so fun to finally put some personalities and faces to the screen names I've gotten so much support from.

OK, I'm exhausted. I'm going to do my physical therapy exercises once more (only got to 4 times today... rats) and hit the hay. I just wanted everyone to know that things are looking up.

I'll get to that finish line someday.

Quick Update from Gloomsville, My Temporary Residence

I got my drain out today. It hurt a little, but hey, pain comes with the territory and it wasn't a big deal. The medical assistant who pulled it told me that some people deal with those things for 3 weeks! Mine was out in about 5 days. It sucked to have to drive all the way to Denver for a 10 minute appointment, but I'm happy to have the thing out. I didn't hate it as much as some people did, but it was unpleasant.

Also, I rescheduled my surgery for February 9. I just didn't want to wait any longer than necessary, and the appointments that were already scheduled for that day are meaningless since I'll be having another surgery. Plus, maybe this way I can eat some birthday cake (or Toasted Almond Pie) with my dear friend Amber on her birthday.

As far as radiation goes, I rescheduled my consultation appointment to Feb. 23 because apparently I have to have time to heal. After that, I schedule a simulation appointment, and then my daily radiation appointments will start. Apparently it will take up to two weeks after my consultation to do the simulation. Fantastic. I wonder if we could make this process take any longer. As it's so enjoyable and all.

As you can see, I'm still in a pretty lousy mood. I'm going to lie low for the next bit until I deem myself worthy of human companionship. I'm seriously no fun right now.

I Spoke Too Soon (Not an Inspirational One)

So I recounted my dramatic pre-surgery in my last post. And I told you that I was doing pretty well. The pain isn't terrible, and I'm getting further and further along the road to recovery with my physical therapy exercises.

So that's the good.

And here's the bad.

I called today to find out what's going on with my pathology report. I got two parts bad news. Part one was that there was a small section that was positive for cancer in my sentinel lymph node. I was really hoping and praying that there would be no cancer in my nodes. I don't know the significance of this yet; hopefully I'll know more soon. Part two was that the surgeon didn't get all the cancer out, so I have to have a re-excision.

What does re-excision mean? It means that I have to have another surgery.

When a lumpectomy is performed, the surgeon needs to remove the tumor along with a margin of healthy tissue surrounding it, keeping all the cancer contained. When the lump is removed, it's sent to pathology, and the pathologist examines the outside very carefully to make sure that all the tissue surrounding the lump is cancer free. If they find something on the outside, however, the surgeon has to go back and take more tissue, still trying to get "clear margins."

I knew this was a possibility, but for some reason didn't really think it would happen. And then when I knew I could find out my pathology results today, I was really hesitant. I could sense that I'd get bad news. I was right.

Don't get me wrong; this next surgery should be relatively easy in comparison to what I've just gone through. She won't be messing with my nodes, which is the only part that really hurts now. And she only needs to take 1/4". And I won't be under general anesthesia; it'll just be a local anesthetic (yay... again... needles in my breast...) and some loopy medicine. I'm sure I'll heal up quickly.

The part that gets me is that it's ANOTHER bump along this already too bumpy road. I feel like at every crossroads I run into complications. And each thing seems to add weeks onto the total time it's taking to get well again. I'm worried that because I have to have another surgery (which, by the way, isn't scheduled until Feb. 12), I'll have to wait to start radiation. I know that radiated skin doesn't heal as quickly as normal skin, and I'm guessing that after this next surgery I'll have to take even more time to heal and THEN start radiation, adding maybe 3-4 weeks to my finish date.

What's 3-4 weeks when you've been in hell for almost 30 weeks?

I guess I shouldn't get ahead of myself because I haven't talked to anyone about whether this will stall the radiation process or not. I just have a bad feeling about it. Mostly because nothing seems to go right for me anymore.

The news that I have to have another surgery sent me into a half day of depression. It's not a huge deal, really; it's a pretty simple surgery and re-excisions happen. But it's on top of all of this, all of this cancer bullshit. I realized today, because it has become abundantly clear to me, that I am tired. I haven't felt good (as in good for a normal person) in over 6 months. That is a long fucking time to not feel good (sorry for swearing Mom and Dad). If I didn't feel nauseated, I felt tired. To distract from the fatigue is pain. I get sick or an infection in my toe. I no longer have the capability to lie down when I feel yucky and wake up feeling fine. I wake up and I am still tired. I still have cancer. I am still recovering from treatment. I am still weak. I am still living a life that I do not like, let alone recognize.

I AM TIRED OF LIVING THE LIFE OF A 25-YEAR OLD BREAST CANCER PATIENT.

If it's another 3-4 weeks until I start radiation, plus 5-6 weeks of radiation, that could be as long as 10 more weeks. Two and a half months.

I want to move on. I want to move. I want to work. I want to ski. I want to be me again.

I also realized today that my life is dictated by other people right now. I do whatever the doctors tell me to do. Take this chemo. Have surgery. Have more surgery. Do radiation. Be here at this time on this day. Wait until the doctor is ready for you. Take these drugs. And none of it is fun. I am trying to keep myself alive and so I do what they say, and there is no guarantee that it will work. I feel like the more I do and the more I find out, the worse I feel and the worse my prognosis gets.

I don't want to live in statistics, but according to http://www.breastcancer.org/, patients with triple negative cancers (yours truly) have a survival rate of 77% over 5 years versus 93% of patients with other breast cancers. That means, for those of you who aren't great with the numbers, that one out of four will be dead in 5 years. Those are not great odds. Of course, that statistic includes all stages and grades of cancer, so it may not be so helpful, but still. Not good on a little Carrie's mindset.

I can't help but wonder still why this happened to me. How this happened.

I cried today. A lot for me. I am feeling very tested. And very tired of cancer. I know I can do this; I know I'll make it through the surgery. I know I'll get my range of motion back. I know it will stop hurting. I know someday I won't be tired and I'll feel great again. I know I will ski. But today was a hard day.

Oh yeah, and I totally acted like a jerk and yelled at my mom, which probably didn't help her at all. I just couldn't talk about it anymore. I didn't want to talk about cancer anymore, or surgery, or anything related to how much my life sucks these days. I didn't want to be on the phone. I didn't want to be in my own skin. I usually don't feel like I have a crappy life, but taking a candid look back at the last 6 months, it's been pretty damn bleak. I know, though, that it could be worse. But today wasn't a "count your blessings" day.

What I wanted to do today was call my ex-boyfriend and just SCREAM at him (no, not Marc, he got me pretty flowers... actually I have lots of pretty flowers right now). Hmmmm, that's healthy.

Even though it isn't representative of my feelings tonight, I'll leave you with some good news.

Tomorrow I'm going to Denver to get my drain removed. Yay! I think it's going to hurt, but whatever, what's new. And tonight I finally took a shower, and when I was washing my hair, I could really feel some of it coming back in. Not to say it's all growing yet, but at least there's something starting.

So there you have it. I'm going to do my physical therapy exercises once more, brush my teeth, take an Ativan, and hope the sun shines a little brighter tomorrow. The truth, whether I can see it or not tonight, is that it usually does.