As I had hoped (although I know I sounded very melacholy last night when I updated you), today has proven to be a better day. We went to the oncologist this morning and it seemed very smooth. I hadn't gained any weight since last year (that's just a bonus, for me). The doctor actually spent a decent amount of time with us. He said he had looked over the films from the emergency room and he had reviewed all of my films from the past 8 years. Based on all of this he feels confident that the cyst on my liver is just a simple, common hemangioma. The emergency room report showed that it is more blood-filled than fluid-filled, and these cysts occur fairly frequently, they don't cause any problems, you don't have to do anything about them, and many people can go for decades and never even know they exist. I greatly appreciated him taking the time to go through all of this with us, as he actually did try to thoroughly explain everything and his thoughts, etc.

Now, do I think he would have been so thorough and time-intensive if the debacle of yesterday had not occurred? Truthfully, no I don't think he would have been. Today was atypical of our usual visits, and miles apart from yesterday where we were basically told to get over it. I think it is difficult at times for some doctors to consider the perspective of the patient. I may be one of his 500 patients, but I am my family, friends, and loved one's only Casey. We can't read his mind and know the facts and statistics that he knows to reassure ourselves. We are at the mercy of those who know more than we do, and should be treated with decency and respect as such. Sometimes I think that it would be better if the doctors who treat for certain things had actually experienced the disease for themselves. It is a drastically different situation depending on which side of the desk you are sitting on. Desensitization is normal, of course, and they must do this to an extent, but desensitizing should not be the same as dehumanizing. Compassion and understanding should always be valued, regardless of how skilled you are at your profession, or how many studies you have read, etc. What good is being in remission or "well" if you live in fear of what might happen?

I have many more thoughts about this, and I'll get to them sometime in the near future. I think that is enough for today, though. To be certain that this is nothing more than a silly cyst the doctor scheduled me for an abdominal CT scan with IV contrast for tomorrow. That will hopefully give us a great picture of the nothing so I can rest assured for a long, long time. In the mean time I am going to spend the rest of this rainy day getting ready for a course presentation I have tonight, and trying to start putting together some study materials for finals (uuggghhhhh). I think I'd rather do all the yuck testing than study and take finals, but lucky for me, I get to do both! Wait...that's not lucky, is it? Keep me in your thoughts, and I'll update you as soon as possible.

C

I have so much to say and so many thoughts swirling in my head that it is making it rather difficult to compose a sensical post for today. I suppose I shall start toward the beginning and work my way to now. Over Thanksgiving I started feeling as if I had kidney infection symptoms. I called my doctor who called in some medicine for me. However that same day (Saturday) the pain was just getting progressively worse and intense. So Patrick convinced me we needed to go to the hospital. In the emergency room they ran several tests and informed me that I did have a kidney/bladder infection. Also, they found a 2 centimeter lesion on my liver, most likely a cyst. However if you have had cancer (especially rare cancer) you never want to hear that there is a growth somewhere on or in you. Sure it is most likely just a fluid-filled cyst. But what if it's not?

So the doctor from the emergency room told me to follow-up with my oncologist today about it all. Since I am due for a check-up anyway, it was pretty good timing. But when we showed up at the oncologist's this morning we received a less-than-warm welcome. The receptionist tried to brush us off to the nurse, and the nurse tried to brush us off altogether. They wouldn't even listen to what we were saying. The nurse was just focused on, "You need to get your chest x-ray" and the receptionist was focused on, "You don't have an appointment this morning". No, I did not have an appointment. Because oddly enough their office is closed at midnight on Saturdays and thus I was unable to make an appointment. The really insulting part was that they kept insisting the doctor had a full clinic today (which I'm sure he probably did); however, the waiting room was completely empty. Just us. Also, we could actually see the doctor through the pane of glass by the door. He was standing at the counter talking and laughing with the nurses about Black Friday shopping and the Iron Bowl. Yeah, he was totally swamped at that moment. I can see why he couldn't possibly take a break from his watercooler chatter to tell us (in five minutes or less) how we should proceed. Or at least reassure us, or anything.

So the situation got so ridiculous that finally my mother just walked over and opened the door to the clinic rooms (also completely deserted) to speak with the doctor. The nurse begins shouting, "Ma'am! Ma'am!" but my mom was determined. However the doctor said we needed talk to the nurse so she could get some more information about the situation. The nurse was not interested in anything but, "You need to go get your chest x-ray". I am still trying to figure out how my chest x-ray was going to provide insight to the cyst on my liver. So in short, the doctor was abrupt, rude, and seemingly could not have cared less. We have an appointment for tomorrow morning. I spent all day getting labs and x-rays and chasing down medical records and my CT films from the emergency room visit. Is it going to matter? Probably not. I lost a lot of faith in my doctor today and gained a lot of resentment for his indifference and dismissal. We were told to follow-up with him. We tried to do that and were treated like dramatic, over-reacting children.

I don't know what we are going to do from here. We'll meet with him in the morning. He'll tell us we are concerned over nothing (without properly checking to be certain). We'll leave unreassured and still worried, and I guess we'll go from there. I honestly don't think this cyst is anything more than just a cyst. However, I would really appreciate some respect and decency from someone who I have literally trusted with my life. The way I was treated today made me feel completely unimportant, insignificant, and alone. I hope tomorrow will bring better news and a better outlook on everything.

Let's be thankful

Happy Friday after Thanksgiving! I hope everyone had a lovely and safe holiday and that you are enjoying the turkey hangover today. Some of you are out shopping, no doubt. Well actually maybe not... If you started at the 4am sales this morning you are probably passed out in your car outside the mall clutching several shopping bags in one hand and a Red Bull in the other.

Or, if you are an avid Alabama or Auburn fan you are likely in Tuscaloosa, at or outside of Bryant-Denny Stadium, ready for a true Iron Bowl.

As for me, I am actually doing neither. Instead I decided to spend the day babysitting in an attempt to make some money rather than spend it. I have Christmas gifts to purchase, new brakes to pay for, and a car tag renewal coming up. So here I am! Not a bad way to spend the day, actually. So far we've read books, watched Beauty and the Beast, played a rousing game of "Hi Ho! Cherry-o", and done a lot of dress up.

Now the game is starting and I'm hoping to distract the little princess with books and other amusements so I can catch at least part of the game. Patrick, for his part, is asleep on the couch here. I am definitely not complaining; I appreciate the company (I might even cut him in...well, probably not but surely some of what I earn today will go toward a Christmas gift for him so...everybody wins? How's that for justification!). Poor Patrick is exhausted after working an obscene number of hours at work the past month or so, and especially after the three marathon Thanksgivings we celebrated yesterday. Three, you may ask? Yes. Three. We happened to be blessed with amazing and large (and amazingly large) families, and are pretty dedicated to devoting time to each of them on holidays.

So yesterday morning I was up early baking and finishing up the dishes I was sending/bringing to each house.

We drove for an hour to Patrick's parents' home and arrived around 11:00am. We spent quite some time there visiting with his family and friends, watching a little Finding Nemo, and eating, naturally. Then we went to probably 6 or so places searching for a Thanksgiving newspaper (noooo luck). The 30 or so minutes in the car on to my father's mother's home with all 20ish of those there. We watched them play Dominos and I nibbled on some dessert. After a couple of hours there we drove another 25ish minutes to my mother's parents' house where we visted and (at least I) feasted again... Hey, it was supper time, don't judge me. We spent a few hours there before finally heading home where I immediately changed into pajamas and got in bed to watch some quality Thanksgiving tv (Casino Royale and The Godfather...traditional holiday favorites?). I was going to try to make it to a couple of the stores that started their sales at midnight, but considering I fell asleep by 10pm it pretty much wasn't going to happen.

So here I am, watching the game. I just put TinkerBell down for a nap (she actually fell asleep while I was reading to her...what does that say about how interesting I am?) and I am debating getting to work on some school work I have coming up. Not my ideal, but exam/final presentation/panic attack time starts pretty much on Monday, so the longer I put it off the more painful it will be! I hope your weekend is more exciting than mine, and that you are all counting your blessings. Top of my list are: amazing family, great friends, good health, and love. Think about some of your own; we all have so much to be thankful for!

Casey

Let's share a good memory

It is pouring outside. I woke up obnoxiously early but knew from previous experience that if I went back to sleep that I would end up oversleeping. So I got up, got ready, and eventually headed to Starbucks for some quality time with my computer. After about 4 hours there I realized I need a change of scenery so I ended up back at home (which naturally delighted Wellington!). Now I think I'm going to take off my exhausted, stress, end-of-semester hat and put on my curl-up-on-the-couch-and-blog cap. Until I have to get to class at 3:30 (until 8:00, ugghhh).

So this morning I was remembering the last day of my year of treatment. After that first month of the every day intensity I progressed to injections three times a week that I administered myself. My last injection was actually on my 18th birthday. In honor of the occasion my two sisters and my parents came over to my freshman dorm room that afternoon. As I got out all the medicine and injection stuffs and prepared for the triumphant last one, I noticed my dad getting something out of his pocket. Hmm. It was a small bottle of Jack Daniel's whiskey! He also had come prepared with a shot glass. Now, I am all for celebration, but I was kind of confused as to what was going on. Then he said something along the lines of, "A shot to celebrate your last shot." Click! It then made sense, and was a great way to celebrate and wrap up a year of my shots...but with a much more enjoyable "shot" than the ones I had been taking for the past year. A true Daniel Family moment. My family is amazing.

Let's ramble

Good Monday morning! I hope you had a nice weekend and are making it through Monday as best you can. We had a very busy weekend, having a yard sale Saturday and Sunday. It went well but was exhausting! Oh, and my presentation went well, by the way, if you read my last post. We got some pretty tough questions from the TAs and the professor, but all in all I think it went well. Now I am focusing most of my time to finishing up papers and getting ready for finals. The semester ends (for me) on December 14th and then it's into the last leg of courses for this program. I can't believe how amazingly and stressfully quickly two years is going by. I feel like I just started my doctorate, but in reality those comps (comprehensive exams) are staring me down and getting closer each day. However, in the spirit of taking things one day at a time, I am trying to focus right now on finishing up this semester before I surrender to the panic of June comps.

Anyway, I have been debating what to write for today's entry. For some reason it has been extremely difficult for me to focus today. I guess too much fun this weekend is keeping me distracted. I've been working on writing the theory section for a paper for a couple of days but I haven't been able to wrap it up yet. Having Wellington all curled up next to me is also not very conducive to getting work done. However, his adorableness (new word?) aside, the show must go on. As I continue to avoid the paper and ramble on to you. I promise I have more interesting topics coming. Just maybe not today.

While I have been fretting about what to write about today, I have been talking with my bestie Laura to gain inspiration. Althoug that isn't so much specific to today. I don't know if you know about the genius that is Blackberry Messenger, but it is a wonderful little application on Blackberry cell phones that is similar to texting but somehow easier and facilitates ongoing, longer, more entertaining conversations. Therefore Bestie and I spend a considerable amount of time during the day talking (or messaging, I guess) to each other. It helps bridge the distance gap as she lives in Pensacola, Florida right now (but not for much longer if I have anything to say about it).

Anyway, per some of her suggestions, I thought every now and then I'd give you a peek at some of the stuff that has been going on with me lately. My blog is definitely about my experiences and cancer, but also about what all of that has helped me become today. Where I am now, and how I got here. And maybe even one day where I will be going from here. But that is also not going to be today because I'm still working on that last one (the whole "one day at a time" thing). So I'm going to work on somewhat of an ongoing photo essay showing what's going on in my world.

For instance, on Saturday, my boyfriend Patrick and I went to my college sorority's fall party. It was so fun to be there and have a nice night out, even if I am not actually in college anymore. It was funny to be in an adviser capacity, but I didn't feel out of place. Well, until I went to the bartender and requested a cup of water and he looked at me and said, "Oh. You're with the chaperones, right?" Oof. There it was, ha. I'm not sure if he could tell because I look considerably older than the girls or if it was because I was drinking water... However my cover was blown, but we still enjoyed the evening. Here is Patrick and I getting ready to leave:

I'll work on getting some more things together to give some insight into what I do and how I do it (in case anyone is interested whatsoever) but for now, good luck with your Monday. I'm going to get back to my beast of a paper, and I'll see you tomorrow!

Let me just tell you...

So this has nothing to do with cancer, or me having it, or anything of the sort. But I want to share (particularly for Leslie!) about today. Also, sidenote, my blog is about me having cancer, yes, but also about my moving on from it, where my experiences have led me today, and about living life as a survivor. And being able to see the silver linings, humor, and fun in life... Even when there doesn't seem to be any. First of all, last night I had a lovely dinner with some friends. Here is me and Tara at dinner:

Doesn't that look wonderful? It was. Sushi, om nom nom.

Okay, now to today. I have an important presentation today for my epidemiology class. We designed a study about oral/pharyngeal cancer and its potential association with alcohol-based mouthwashes. Sorry, that was for the few of you who might think that is interesting. And thank you, Heather and Staci, for the ideas. Anyway, presentation is at 3:00pm. I was babysitting for a sweet, adorable, amazingly precocious little 2 year old from 9:30-2:15. Plenty of time to get to school and load my slides... I had it all figured out. So this morning I got ready and put on my go-to presenting outfit before going to babysit.

When I got to their house I found out poor baby girl had a fever but she seemed in good spirits. No other symptoms so maybe just some random fevery (new word for today) bug or something. We had a good time watching some "Go, Diego, Go!" and reading a couple of little animal books. Pretty nice little Wednesday. Then, I smelled that disctinct odor of "time for a diaper change". We took care of that and then back to the adventures de Diego. Sweet little thing climbed up in my lap and actually just conked out, sleeping in my lap for about 45 minutes or so. I kept watching Diego rescue all kinds of animales while she slept. In addition to not being so mechanically-inclined, I'm also not so technologically-inclined and trying to work the impressive dvd/tv/stereo combination at their house has led me down unfortunate roads before.

So I'm just chillaxing watching the Nick, Jr. when I start to smell that oh-so-distinctive smell again. I thoughtm "Man, maybe she is starting to have some other symptoms after all." I picked her up and went upstairs to do another quick-change. Okay if you have weak constitutions you might want to stop reading here. Just a forewarning.

As I started to change her I realized she had, more or less, an impressive puddle in her diaper. Like the kind that you might experience after a night of spicy Mexican food. I'm a veteran babysitter, though. Plus I worked in a hospital for 2 years changing adult diapers and doing all kinds of gross clean up. So I wasn't fazed. I bravely took a deep breath and proceeded with the clean up. But it was then that I realized that this particular...emission was so...not solid...that it had leaked out the sides of this unreliable diaper as well as considerably out the top of the back of it. Wow. Now I was really impressed. I will spare you the creative Paint drawing I am envisionaing right now.

So this was going to be a little more in-depth of a clean-up than I had planned. But still, I promise you I have seen and cleaned up much worse. Unfortunately for baby girl I had to do some serious clean up with wipes and all: legs, sides, back, not to mention that whole region. But she handled it like a champ even though I knew she was miserable. And lo and behold it was all over her clothes, too! I'm thinking, "Geez, what kind of spicy curry has she been into?" But I found another cute outfit for her and we were back in business. She was obviously still feeling awful so I put her in her crib so she could continue her nap that I had so rudely interrupted.

I went to get the dirty clothes and clean up the array of wipes and diaper mess that had spawned on the changing table and I was thinking, "Man, it still is quite potent" when I glanced down. Much to my shock and dismay, baby girl's leakage had extended also down the front of my dress and along one of my (white) sleeves. Now let's consider the facts:

1. She had no symptoms until I took the reigns
2. I was, for one day, wearing nice dress clothes
3. Still have that presentation at 3:00pm

Really, universe? Really?

So my mind started to race. What. Do. I. Do. Presentation is in hour and one-half. I could call her mom and ask her to come back early but she had to pick her other daughter up at 2 and I didn't want to have to wake up poor, sick baby girl. Okay, plan A:

I grabbed the wipes, and headed to the bathroom to start the emergency clean-up process. Wipes, soap and water, gentle scrubbing.

Okay, the...emission...is no longer visible- Win. However I can still smell it. Not exactly what I was going for. Okay, plan B:

Laundry room cabinet is thankfully stocked with Febreze and there is Lysol disinfectant on the changing table. I start a-spraying. Alright, not my best idea. I now smell like curdled milk-baby diarrhea-Lysol-"Gentle Breeze" or something. Okay, plan C.

Frantic text to baby girl's mommy, explaining the situation. She's the sweetest woman ever and immediately called to try to help me out. She said she'd head home then go get her other daughter (baby girl had to get up for the doctor anyway) so I agreed with a somewhat-less-guilty conscience. I woke up the poor dear and found some shoes and socks. Mommy came home and I tried to reassure it really wasn't a big deal (I mean it; I know you're reading this!) then I raced out to try to get home for my own quick change. Unfortunately it hit me that I still had to print out our survey draft, my notes, and upload the slides. Ugghhhhh. My one hour window has suddenly vanished and I have to high-tail it to school.

So here I am, waiting to present for this big epidemiology class. Not exactly the pristine vision of professionalism I was this morning. More of a flushed, smelling like baby diarrhea/disinfectant/"Clean Laundry" or something mess. But no matter! I just won't get near enough to anyone that they can smell me. Foolproof. As long as I don't throw up from smelling myself.

What am I talking about? I've got this. I'm a rock. I had cancer for Pete's sake! I can handle a little "get-up-in-front-of-your-peers-present-a-semester's-worth-of-work-that-I'm-not-totally-sure-about-while-smelling-like-a-poorly-managed-petting-zoo" business. Okay, maybe not. But hey, I ain't scared (that would be a phrase meant in humor; I don't really use the word "ain't"). Here we go. Wish me luck! Game on.

Let's talk about check-ups

Check-ups. Whether you spell it with a hyphen or not, these are always looming for cancer survivors. I remember the progression of my check-ups. When I was undergoing treatment daily that first month, I saw my oncologist every week (every Monday actually). When I was doing treatment just three times a week, I saw my oncologist every month (the first Monday, maybe? Doesn't matter). After that first year we went to check-ups every three months which was just enough for me. As in, not having to be there constantly, but going enough that it gave me peace of mind. However, after a few years of consistent contact with my oncologist, I think we became a bit...attached? And by this I mean we were attached to him (ironically after that first not-so-thrilling impression). I definitely don't think he was attached to us, ha. He didn't have a problem with us or anything, but I know that our family can be a bit "overwhelming" at times.

So as time passed, my family and I slowly stopped being the "regulars" at the office. It was weird. Every three months turned into every four months.

And then came the visit a few years in, when my oncologist finished his checking and said, "Well things look good, I think you can extend it out to six months." I was dumbfounded, more confused than anything. This is where some of that attachment came in. What did he mean? Was I "cured"? Is there such a thing as being cured? I wasn't going to see him three or four times a year? Ummm, was I okay with that? Was I ready?

And (to be a little insenstive but honest), the look of sheer panic on my mother's face was priceless. She was more confused and freaked out than I was. It appeared that she definitely was not ready to cut the cord. Without our even realizing it, this doctor, whom we didn't even care for in the beginning, had become our family security blanket. And now we were supposed to just give that up (not completely, but going from monthly visits to just twice a year seemed pretty cold turkey at the time)?? Then the tears started to come, and I don't mean from the doctor. We depended on those visits. That was how we knew that I was still okay and we could keep going. My extended family counted on those visits; on getting the assurance that I was good to go for another few months. And now what?

When he saw our panic he actually became a little confused. Were we the only ones with this attachment? It was definitely possible, but I still don't think so. We settled on a compromise that we would just keep coming as often as we had been and he'd deal with it. Perhaps a bit one-sided, I suppose. After that year, though, we were prepared for the extensioning (today's new word) and we did not put up a fight (well, not much of one) when he carefully broached the topic of the six months. After a few years of the six month visits, it actually got more normal to not go there and see him than it felt to be checking in. The six months became a whole year, and by that point we were really okay with it.

The only issue being that the tests he ordered changed. I used to get a CT scan of my chest (where they think the cancer would matriculate if it returned) at his office in the nice, non-threatening suburbs.

When we moved up to a year, he decided I could also advance to the less-radiation-exposing chest x-rays instead. Great, right? Well, sort of. I had/have to do the x-rays downtown at the main hospital, and that is a place I do not like to go (particularly as a patient). That building is full of painful memories and a past I had/have spent a lot of time trying to overcome--more on this subject later. The first time we went for my x-ray there (instead of the CT), I started crying on the parking deck. It sounds really bizarre, but just proximity to that building brought back a flood of emotions that apparently I had been supressing. It's better now when I go than it was, but it still feels somewhat like a time warp back to when I was 16, scared to death, and didn't know what was going to happen to me.

But once the x-rays are complete, I go to see him every year still at his office (strange how that building--the oncologist's--where I received bad news, chemo, and more needle sticks than I care to remember is not nearly as intimidating as the other). It is a long process of waiting and blood taking and talking... But even though it's not a fun time, I do feel that security of knowing I am still under someone's watch, and I am thankful for it.

I bring this up now because it is actually time for my yearly check-up and I am feeling those mixed emotions once again. I truly believe, and somehow "know" (if one can) that nothing is wrong with me. Yet that apprehension has descended as naturally as Christmas decorations appearing at Wal-Mart in September. It's part of the journey, though. I wonder if other cancer patients, patients with any kind of chronic anything, their friends, their families, share these feelings? Anxiety and relief occurring practically simultaneously. For some reason, I really don't think I am the only one.

Let's weigh the pros and cons of playground safety

Good evening, everyone. I hope you are having a nice Tuesday with somewhat less spastic weather than we are currently having here in the Magic City. What to talk about today...? How about playground safety?

Well, I won't go into the excrutiating details that I know about this topic, but I will tell you why this is even on my mind. For one of our core classes, "Health Program Planning" we are meant to learn about planning and executing different interventions and programs through fieldwork. We were given a list of assignments to perform this fieldwork and I ended up working on the Playground Safety Assessment project. Not my first choice, but we have to roll with the punches. So for the past 2-3 months my "team" has been learning about playground safety, how to assess it, teaching others how to do so, and presenting our findings. Again, not my first choice.

I'm not necessarily what you would call "mechanically inclined". I am very blessed to have a great father and a wonderful boyfriend who are extremely helpful when it comes to using heavy duty tools (like rulers and such). I am actually somewhat intimidated by tools and measurements and things. I was going to take some kind of research methods class last spring, but when the professor emailed me the syllabus and on the list of supplies we needed graph paper and a compass and protractor, I dropped it (the class). Just not for me.

So anyway, the idea of me wearing a toolbelt and walking around playgrounds with a tape measurer and a clipboard is kind of silly. And that is exactly how I have felt for 2-3 months as I did this. I wasn't sure if this project would even have an impact on people, but luckily I sprained my ankle about a month into the project and was able to use that as a scare tactic by telling parents, "This happened on an unsafe playground. Is this what you want to happen to...your...children?!" Cut the judgment, I told them the truth eventually.

But yesterday we went to present about playground safety at some conference at the request of our professor. When we got there they started to tell us we had to register as members of their organization (paying $30 in addition to the $20 we had already paid just to register for the conference--have I mentioned we are poor graduate students?). We explained to the [extremely rude] registration table that we were just helping with a presentation, would only be there for an hour, and weren't even attending any other sessions. They agreed to "hold" our forms and discuss it with the head honcho of this "conference".

So we presented and we were witty and charming, naturally, did a wonderful job, and amazed the crowd... Or something similar. But as we made our triumphant way out of the room and down the hall, a rather large, burly, intimidating...woman... stepped up to us and she literally said, "I need you three to come with me." I suddenly developed that knot in my stomach that you used to get when you were like 7 years old and your parents got home and you had been dressing up your little, 2 year old sister as clown and putting all kinds of crazy makeup and junk all over her without anyone's permission and she was crying her eyes out. Okay maybe that wasn't you, maybe it was just my older sister (I'll see if I can find and scan in the photo for your amusement). Point being that when the burly woman ambushed us, I had that panicked, "Crap, I'm in trouble" feeling.

So she led us over to Mrs. In Charge and Mrs. In Charge proceeded to lecture us about professionalism and how she didn't know if it was our micommunication or our professor's, but you don't just go help present at a conference without registering to be a member of that organization (not necessarily true...we are students) and told us that she would be sending us the forms by email and we could send them the forms (and money). For the time that we were there. So that would be $20+ for registration plus $30 for membership so $50+. That would be for a total of 1 hour. From the entire conference. Assisting our professor. Did I mention that we are poor graduate students? I thought so. Because we are.

Sorry, there were a lot of fragments there. But really? I found great irony in being lectured about professionalism while surrounded by 500 people in wind- and sweatsuits. But I'm not naming names!

The moral of the story is that playground safety only leads to trouble.

Let's figure out what the point of all this is

I hope everyone had a nice, restful weekend. I had a lovely, work-avoidance weekend (with the addition of the manual labor I described on Saturday). Now I find it is again Monday morning and I have a full week to face. Amazing how I greet each Friday as if it is summer vacation and spend a great deal of time on many Mondays scolding myself for not being nearly as productive as I had hoped and planned. With the end of the semester coming quickly that sense of anxiety and panic is being to set in. Those of you out of school who envy students' "Christmas breaks" and day off here and there have likely forgotten how sick this time of year made you and the 5-25 pounds you gained from stress eating. I might have been personalizing just a bit there. At this stage in my academic game I seem to have all the stress and nerves but none of those lovely vacations I remember having during college. In fact, I rather dread Sundays, particularly Sunday evenings because I find that is when I am frantically trying to ready myself for the week and I know Monday is looming just around the corner.

Anyway, back to this particular Monday. I realized maybe I should clarify exactly who I am and what I'm doing. I am a second year doctoral student focusing on Health Behaviors in the greater span of Public Health. I will take classes in the spring and then I proceed to primary comprehensive exams (June), dissertation proposal (August, hopefully), secondary comprehensive exams (around the same time), and then a year or so working on my research and dissertation. Of course all of the latter things hinge on me passing the first round of comps. I'll be getting progressively nervous about these as the months go by.

As I have mentioned, my interest is adolescent cancer patients and survivors. I am particularly interested in quality of life, transitional care, and survivorship. While I have plenty of my own material to draw from, I am more interested in what these individuals need to improve their lives on the daily and how we can provide that for them. Sadly this is an extremely under-researched area, and currently a very large gap in the literature exists. It's time for this to change, I believe. There is such a high survival rate from childhood and adolescent cancers, but what good is living if you aren't enjoying it? This is where I hope to come in. Everyone's experience is different and I am astutely aware that I cannot generalize my feelings and experiences as "typical" for everyone in this group. I feel pretty sure that my experiences are somewhat atypical, but that is one of the things I am hoping to find out.

So how do we improve quality of life? You tell me. What do these individuals need to make their lives a little (or a lot) better? My opinions (oh, I have so many) on the matter range greatly. One of my thoughts is that we need to provide them with more information about what they are going through (not knowing and/or understanding breeds fear and fear breeds consistent anxiety...not the makings of an enjoyable existence). Although there is a lot of information out there, is it targeted? Is it age-appropriate? Is it thorough and helpful? A lot of the information resources I've seen are not. They are either far too complex and even I don't know what they are talking about (not that I'm an expert...yet). Or often they are oversimplified and might hint at what's going on but don't really provide any answers. And if other patients are anything like me, they have a lot of questions. One thing that I particularly find lacking is information about treatment, side effects, and what to expect long-term. Unfortunately, and as I did not know, side effects do not necessarily end when treatment does, and some pop up unexpectedly even years later (more in a later post).

I also think it could improve things for these patients if they are actively involved as much as they want to be in the decision-making process. I know that under 18 means parents and guardians have to okay everything, but that isn't a reason for these teens to be ignored or left out of what they will be going through. Social support is also a key issue--what kind of support are they looking for and how can we help provide that? Are peer groups best, or one-on-one conversation? Does sharing help? And how can we incorporate technology into these notions. Adolescents and children today are way more advanced than I am and the world of internet is what they live in. Why not appeal to these areas; provide them with resources in a format they are familiar with and enjoy? Facebook, twitter, blogging...the possibilities seem endless. But what helps, what doesn't, what do they like, what do they prefer? Have they ever even been asked???

My opinion on the matter is that we as researchers, medical professionals, clinicians, and all those involved need to change our point of view. We don't need to decide for them what they need or want. We need to ask them and let them guide us if we really want to make a difference. And I do.

Let's just chat

Today (well tonight) I am going to stray from exclusively cancer-related topics, and here's why:

I decided to be a good friend and go with my little sister to babysit last night. It ended up being way more exerting than I had expected and I slept in pretty late today. Normally I'm up by 7am or so and if I try to sleep any later, Wellington just won't have it and he forces me to get up, go out into the cold (as it is bitter cold here in the early morning and then a toasty 80 degrees by 1 or 2), and start my day. This morning, however, Wells decided to cut me some slack or else I was so completely unconscious that he couldn't rouse me... Either way, I slept really late and by the time I got up, half my day was gone. Oof.

While I peacefully slept, my dad was up and outside, working away. Something you should know: my father is literally the hardest worker I've ever met, seen, heard of, etc. Just because he's not at work doesn't mean he's not going to be working! We have the most beautifully manicured lawn in the neighborhood and it is single-handedly due to him and his high standards. So the first time I got out of bed this morning was because my mother came running in my room to tell me that Daddy had been cutting down limbs or something when he accidentally got sawdust all in his eye. We proceeded to try to flush out the sawdust with saline solution and debated taking him to an emergency eye clinic. Once we got that situation under control (luckily it seems no permanent damage has been incurred) I decided to lie back down briefly. I promptly fell asleep for another hour or so.

When I stumbled out of bed and into the living room this second time I was immediately flooded with guilt. My hard-working, eye-injury enduring father was still at it! Tilling dirt, whacking weeds, blowing leaves, there's just no end! He was enjoying teasing me and little sister in a good-natured (with underlying tones of seriousness) way about how we should be out there helping him. Yeah... I'm not afraid to get dirty or anything but that's not really my scene, nor is it Lindsey's. However, I felt so lazy with all my sleeping and guilty with all of his working his butt off and all that I decided to acquiesce. Even though I didn't feel up to taking on the responsibility of tilling or whacking or whatnot (that's a lot of pressure-what if I inadvertently destroyed the lawn of perfection??) I offered to perform the daunting, if somewhat mundane, task of picking up the thousands of pine cones, sticks, and general et cetera around our front and back yards. So, very long and strenuous story short, I did that for a couple of hours until I became the textbook example of "over doing it". However, I am proud to say that our yards are practically pine cone free! I may have thrown out my back and fallen into a bit of a depression over how out of shape I am, but at least our lawns are no longer plagued with those unwelcome, troublesome cones...

Anyway, this long and pointless story is meant to explain why I am too exhausted tonight to offer witty commentary on my cancer perspective. I will return to (and hopefully round up some more enticing pieces) tomorrow or Monday. As for tonight, I am going to take a few thousand Advil and watch some college football. I hope you all are having a lovely and less exhausting Saturday! Oh, but some news for excitement--I received correspondance from the journal where I have submitted my latest scientific article and they have accepted it for publication with minor revisions. And the revisions certainly are minor: just adding a couple of sentences to the discussion and conclusions, it seems! Please share your good news and updates with me, too!

Let's play before and after

Well, considering my post yesterday was a bit heavy, I thought I'd try to go a little lighter today. People did not seem to like the not-as-fun posting, but guys remember: Cancer is not all fun and games. There are one or two downers about it. However, my philosophy is that it is too easy to get bogged down in the negative so we need to highlight the positive. Well, maybe "positive" is a bit of a stretch, but we can at least work on finding the humor (either intentional or un-), and that is my specialty.

I have been thinking about some of the differences before the cancer, surgery, treatments, etc. Of course this is a very long list of things and cannot be encompassed in just one segment, so I'm sure I'll be adding subsequent posts later that detail more that I can't quite remember right at this moment.

My first are things I used to like before chemo that make me want to vomit now. I had spoken to other chemo patients who had told me all about how they loved certain things and afterward couldn't stand them. I really took no notice of this because I guess you never really understand until you experience for yourself, I suppose. My doctor told me that I needed to drink like 3 gallons or liters or troughs of fluid each day because the chemotherapy dehydrates so much. He also said that drinking gatorade or powerade were better to drink than just water because the sport drinks don't go through you as quickly (all the salt and electrolytes and magic and whatnot). So we loaded up on all kinds of sporty drinks for my consumption. A relative even got her company to donate a ton of gatorade to me (which was excellent). Among the gatorade that they sent me, it was heavy on the "Orange" and "Fruit Punch" as well as a new flavor that was some sort of clear (yes, clear) "Strawberry". I was super excited about all of this and began the guzzling.

However, as time passed I started to learn of the accuracy of those other patients' statements. After a few months of those flavors every day, I started to get the usual tired of them, like you would after drinking anything consistently for weeks. Then after all the chemo I didn't drink gatorade for a long time but the next time that I picked up a "Fruit Punch" gatorade and took a drink it took everything in my power not to spew it everywhere. Turns out, the same was true for "Orange", and to be honest, just thinking about that clear strawberry-flavored stuff makes me sick just thinking about it. Luckily I still enjoy their Lemon-Lime and Grape flavors since I am still supposed to be on the juice to keep my hydration up. But that's right, I am nauseas writing about it, but I do it for you. You're welcome.

Also in the used-to-love-it-but-now-it-makes-me-want-to-throw-up-everything-I've-eaten-in-the-past-week category is my formerly beloved Diet Coke. Before treatment I think I was single-handedly responsible for one-third of the salaries at Coca Cola, Inc. thanks to my insatiable need for and obsession with Diet Coke. When I started treatment and couldn't do the caffeine anymore I even switched to the caffeine-free Diet Coke so I could still continue my love affair in the face of this adversity. However for the past 8 or so years, thinking about that flavor makes my stomach turn. Unfortunately for me, my family's adoration of Diet Coke has continued and I have, on more than one occasion, picked up the wrong cup and upon taking a sip have been flooded with the feeling that I immediately needed to empty the contents of my mouth or worse things would be coming up. So sadly, I had to part ways with my old best friend, la coca dieta.


Also on the list of differences is how much sillier I look in public (and at home). See, as I've mentioned, I have a lot of numbness around my scar area. Also, I've never necessarily been the world's neatest eater. So, you might see where I'm going with this.
Before I could eat whatever and only really had to worry about getting stuff on my shirt, etc.
After I frequently hear, "Hey you've got something all over your face"
And needless to say I greatly appreciate when people clue me in to how shlubbish (new word) I look because I don't enjoy looking like I can't properly feed myself. However it is pretty embarrassing, especially with people who don't know me extremely well and I'm sure are having the internal battle of,

"Oh gosh, there's ketchup alllll over her face. What do I do? Do I tell her? Do I pretend that I don't see it? I mean it all smeared all over her chin! I can't let her walk around like that....can I? I mean, she'll be so embarrassed if she goes around looking like that. But this is awkward. Errrrr."

Yeah, that's right, I can see the struggle on their faces and that usually clues me in to grab a napkin or beach towel, depending on the magnitude of the situation, and clean myself up. I will admit that, with people who do know me, I tend to jump a bit on the defensive and stutter out, "I c-can't help it! I can't feel it!!!" To which my sisters like to respond, "On your forehead?" Busted. In those situations I have no excuse for my slobbery (another new word) but for the most part (I claim) I only have the messy issues from the mouth down. Okay quit judging me. At least I no longer wear a plastic poncho to keep from staining my shirts (alright, I never did that, but what if I did??).

So in conclusion for today, I guess I am pickier, droolier, and messier perhaps than I was before. Although I guess I can't really blame that all on the cancer :)

Let's talk about today

First off, Happy Veteran's Day: Thanks to all who have served, do serve, and will serve throughout the world. Not amount of thanks could equal what they all do but it doesn't hurt to try.

Second, I want to give a special hello to those reading me overseas! Particularly excited hello's to those in Italy, Spain, and Ireland (that's where the majority of my international views have come from, also I'm Irish with some family and loved ones there). I am incredibly lame and love looking at the "stats" of the blog and seeing where people are who are looking at the blog. I am crazy flattered that people outside of my immediate family are interested enough to take a look!

Now onto some discussion. I had a whole topic in mind for today and had done some fancy artwork to decorate it with and everything, but I did something earlier that made me change my mind about today. It is going to sound really stupid and strange but it freaked me out and I'm still thinking about it. Let me begin:

One of my near and dear mates was in a horrible car accident on Tuesday and totaled his car. That's all we really need to continue, I think (I'm working on my brevity, though in person, forget it, I'm a roundabout mess). So longer story short I told him I'd be happy to take him to his job today since he is currently car-less. Before work we stopped to get some yummy delicious Chick-Fil-A (I am accepting sponsors, by the way, Chick-Fil-A, and I am more than happy to be paid in chicken nuggets and Polynesian sauce). We sat down with our vittles (and there was some really great, friendly service, shout out to Chick-Fil-A on 150 and the sweet woman worker who offered to get me a refill!) and chatted away.

My drink had a lid on it and thus, a straw. I'm not a big straw-user. I have nothing against them, but I normally just don't go for the straw, I'm not sure why. Well, I wasn't sure until today. Now I know my subconscious is way smarter than my conscious...or something. Crap, there I go roundabouting again. Anyway! I picked up my cup to take a leisurely sip of my cool, refreshing water (I know, I should write advertising for soft drinks. Or water. Although nothing can beat the label we saw on a Sprite Zero in Japan, "Sexier than water"--that's advertising genius, they should have that in America, too. Crap, there I go once more)

and somehow miscalculated the distance from the straw and my mouth. And it happened: I inadvertantly hit below my mouth.

Most all of you are saying, "So what, at least it wasn't your eye." However, if you have read my backstory and seen my nothing-short-of-museum-quality art you know that my big, very sensitive scar starts with my bottom lip and pretty much encompasses the majority of my chin. So a direct hit to the scar, scar tissue, etc. was pretty much a full-scale disaster for me. I am really paranoid about all my scarrage (new word) and don't let anyone who doesn't absolutely have to touch it (meaning my oncologist and occasionally my well-intentioned dentist who says bizarre things to me that give me a slight complex--see last entry). When I even sense someone's hands coming near it I instinctively cover it, turn my head, and swat (and by "swat" I mean "smack as hard as I can") at their hands. It's reflexive (mostly).


So anyway, I held it together pretty well when I did this. Meaning, I didn't flip the table, throw my cup, burst into sobs, or start screaming. Mentally, however, it FREAKED. ME. OUT. In fact, this happened about two hours ago and I am still kind of freaked out. I cannot describe the horrible, scary, awful sensation that occurs when I feel something touching my scar territory. Although I can't feel much in that area, what I can feel is dramatically unpleasant, to say the least. But the worst part is that now I keep wanting to touch my scar as if to reassure myself it is still there and okay or to reassure the scar that it was an honest mistake and I meant no harm and please don't turn against me and get bigger and redder and meaner.

You would think after 9 years (thas a lot of years) I would be used to this kind of thing and it would be no big deal. Apparently not. Apparently some things stick with you, like gum in your hair. Well, bad example, but I think you see where I am going with this. I wonder if other people who have scars of some sort, from anything, feels the way I do. Like, "I know you are looking, but don't touch. Ever. If you want to keep your hand." Maybe I am extra paranoid and weird because mine is so--in your face (well, my face) and large and in such a prominent area. I see it every day whether I want to or not, and if I don't put make up on, so does everyone else. I wonder if I freak out about it so much because it causes actual physical sensation or if it is just something really personal to me and that isn't something I want others to be a part of. While I am okay with talking about things and my experiences, it doesn't necessarily mean that I want or am able to share everything. I still have my own little (or moderately-sized, or large) struggles that I work through each day, just like everyone else. Perhaps because the appearance of my scars, and now my story, are so public, I subconsciously want to keep something just for myself. No matter what you've been through, or how much people know about you, or how unique or rare or different you are, no one wants to feel like a side show (carnivals are sketch). I felt like that for a very long time, and it was awful. I know that up close and personal I am permanently changed and different from other people as well as who I was before. I know I am different, but I don't always feel different, if that makes sense. Sometimes I feel like I am like everyone else, and other times I feel as if there are worlds between me and the next person (not just because I am awesome and funny and have a great dog). The trick (and I have yet to master it) is finding your normal and staying true to it and to yourself. If anyone knows any short cuts, I'd love to hear them!

Let's recount some really great words of wisdom

I think, as a cancer patient, you are somehow a magnet for advice, guidance, people who need to get things off their chests, and so on. As if it's not hard enough having cancer, but you then also get to be bombarded by everyone's personal woes, fears, and anything they happened to have read in the newspaper, internet, facebook about general cancer information. Not that their concern is unappreciated--by no means; it definitely is! However it can get a bit tiresome feeling like you are the poster child of cancer.

When I was discussing my new venture (--this) with my mother last night she told me she had something for me. She said she had kept every single email she received about me from the time I was first diagnosed, printed them out, and had them in a special folder. My first thought was, "Crap. That is unexpected." I'm really glad she has them, and one day I will enjoy or experience, at least, sitting down and reading them all. Today is not that day. While I have healed immeasurably, I am not ready for that undertaking just yet. But it's all part of the process, which is something I've learned. It's not like a "one day you have cancer and you are upset" and then "you don't have cancer and you are dramatically healed both physically and emotionally". I wanted it to be that. I tried to force life to be that. But it wasn't. Anyway, that is also a tale for a different post.

Back to this subject: my parents and I had this running joke while I was going through everything, and that was, "Everyone's got a story." It sounds harsh I suppose, but it is true! As I said earlier, having cancer (or any type of somewhat common chronic ailment maybe) immediately makes you a flashing target for people to share anything they know or think they know about cancer. If I could count all of the people who told me about the "somebody's somebody's cousin's sister's neighbor's best friend" who had some kind of something (they are almost positive it was cancer) and had some kind of treatment (they are almost sure it was cancer treatment) then... maybe I would have done better in my Cal I class in college. Point being, that people like to share.
Even when you don't particularly want to share.
Even when you really are not up for their sharing.
Even when you feel like crap, want to go get in your bed, are trying to do the polite head nodding and "mmhmm'ing" as you grind your teeth and really wish a hole would open in the floor and swallow them and their bizarre stories up in one heaving gulp.

Okay maybe that last one was just me. But, I think others out there might know a bit of what I'm talking about. It got to the point where, when I was just sitting with a friend, relative, acquaintance, etc. the conversation became:
Them: "You know so-and-so just found out he/she may/may not have some kind of cancer."
Me: "Ah. Well...." (because what do I say to that???)
My thoughts: "Oh!!! Well give me their address so I can call up the others, grab some candles and we can get to their house tonight to initiate them into our club." (meaning our cancer club)

That, also, sounds very harsh. But those were just some of my ponderings during this time when I certainly didn't want to share, yet everyone around me did. Here are some of my favorite conversations gone awry:

As I started losing my hair in clumps and was very freaked out (being 16 and pretty wrapped up/insecure about my personal appearance anyway):
Me: Um, my hair is falling out in pretty big clumps, is that supposed to happen?
Nurse: Well, it doesn't usually happen, but I guess it can.
Me: Um. Oh.
Nurse (extremely enthusiastically and encouraging): But hey! It will grow back! One time I had a patient who had thick, straight, dark hair and she lost it all and when it grew back it was like red/orange and all kinky!
My thoughts: WHAT??? Is that supposed to be a "good" story??? That is awful! Is my hair going to do that? What if half of it grows back normally and the other half is kinked out orange??? How is this a helpful conversation?!?!

Another gem of a chat, this time with my dentist (he really is a great dentist). He had cleft lip when he was born and had been through several surgeries of his own so he felt he could relate pretty well to my situation, the sensitivity, the scarred and sore areas:

Dentist: I know it's tough right now, having been through so much.
Me: Yes...
Dentist: All the surgery is overwhelming and then you are sore while you recover.
Me: Mmm hmm...
Dentist: And getting used to the scars is always difficult.
Me: Yea---wait.
Dentist: And you probably think that you're never going to find anyone who loves you because you're so self-conscious about your appearance now that you look different.
Me:
My thoughts: What??? NO, actually I wasn't thinking that. Until now! Oh my gosh, how bad is it? I thought it wasn't that bad but apparently my huge disfiguring scars have turned me into a modern day Beast (a la Beauty and the). Awesome, I've always wanted a complex.

Lady at my high school talking to my mother:

Lady: We are so glad that Casey is doing so well.
Mom: I know, we are just so thankful.
Lady: We've all been so worried, she's lost so much weight.
(At this point let me interject that the weight loss factor was one of the only things I didn't mind about all of this. Cancer was the best diet.)
Mom: Yes, she has lost a lot of weight. The doctors said that might happen, especially at first.
Lady: Mmhmm. Well, you might just want to tell her to avoid wearing necklaces or some kinds of necklines or anything that calls attention to her sickly thin neck.

Okay... dropping like 20 pounds is the only thing I had in the "plus" column here. And now that is being canceled out by implications, or rather outright statements, that once again I am unsightly? I know she somehow meant well, but once again... Oof.

These are some of my favorite misguided conversations. As I think of more I'll add them. It's lucky for everyone involved that I have a good sense of humor, or else they might have experienced some unpleasant scathing comments that I would have gladly blamed on some random chemo side effect. Hey, they don't know!

Let's change things up just a bit

I wanted to take this opportunity to briefly transition from all the past that I've been talking about into the present. First I want to thank all of you amazing and wonderful people for reading my posts and for the really empowering feedback you've offered me (self-esteem up like 5 points today!). It is very encouraging that so many people share an interest in what I'm trying to do. So thank you!

As I sit in my room watching Spongebob Squarepants I can't help but ponder how I got to this point and what a strange and convoluted trip it's been. And before you judge my television choices let me just say that some people like to go home and have a glass of wine to relax. I prefer to curl up with my laptop, Wellington, and some Spongebob. Spending all day discussing cancer, infectious disease, and the multitude of troubles in the world is very taxing, so I try to balance it out by unwinding with something friendly, uncomplicated, and silly. Plus, Spongebob is hilarious if you sit and watch it from an adult perspective. I can recommend some good episodes if you'd like them... Yeah, I know you don't. It's okay, I stand by my bold viewing choices!

Okay, this post was actually not meant to be an homage to my cartoon guilty pleasures. However it appears to be the course that it's taken. Until my next, more insightful and meaningful post (I'm shooting for tomorrow), I want to thank everyone again for their amazing comments. And check out nickelodeon sometime, maybe it will do everyone a bit of good. Also if you've never played Webkinz, I really recommend that as well. Some of those games are crazy fun and practically addictive (shout out to Delia here). I'll see you all tomorrow!

Let's talk about turning 17...

So we've reviewed how things were going up to the point of chemotherapy, but why stop now? This actually where I can share a little humor with you about my trials and tribulations throughout my year of treatment. Perhaps my favorite story is my 17th birthday. I had gotten all fixed up (i.e. showered and put on clean clothes...hey, I was on chemo) and was spending a pleasant morning in the chemo lab. Afterward I went home and took my usual 4 hour nap (give or take a few hours) and when I woke up I realized all of my family had arrived at our house to have dinner for my birthday. Suddenly, I was gripped with nerves. It is amazing how we often want attention, but when we have a reason for getting a lot of attention (such as being an adolescent cancer patient) suddenly we wish we could just blend in. Well that is definitely how I felt right then. I was just picturing in my mind that I would walk down the stairs and all 25+ family members who were in attendance would all stop talking at once and they would all be staring at me in silence. If you know my family you know that this is a ridiculous notion, as silent is one characteristic that would never be used to describe us. However, in my head that's how I saw the scene going down: everyone staring at me with curiosity, concern, pity (bluch); maybe even starting up a slow clap... Admittedly this was a very dramatic scenario but as I sat in my room debating how I could possibly make a low-key entrance, I was sure that was what was waiting for me on the other side of my door.

So I did what any mature, adult person would do in that situation. I sucked it up, took a deep breath and called for my dad. When he came in my room I simply told him that I didn't want everyone to make a big fuss over me and I just wanted to act like things were normal, no big entrance or hooplah (is that how you spell hooplah; is hooplah a word?) about me. He said he would take care of it. So I sat in my room a bit longer and heard the loud chatter die down as my father was surely making that little announcement to my boisterous and wonderful family. I breathed a sigh of relief, opened my door and made my way down the stairs, knowing that even with my father's request that they would still be unable to stop themselves from showering me with attention. I put on a dignified and brave expression, bracing myself for the inevitable flood of emotion.

I reached the bottom of the stairs and saw my family sprawled all over the house, and I readied myself for the unstoppable... everyone completely ignoring me. Yes, that's right. Apparently my dad is a more convincing man than I realized; no one even acknowledged that I was there. In fact, there some definite aversion of eye contact and pretending they didn't see me! Now I know I asked not to make a fuss, but I wasn't invisible! And it was still my birthday, after all! Come on, people, there has to be a middle ground between overwhelming attention and completely ignoring! Well apparently there wasn't, so I sidled up to the nearest people and said hello and they ever-so-casually (I saw right through it!) pretended to "just" notice I was there. So much for subtlety...

Let's talk about chemo

I remember the first thing my nurse said when I went to the oncology clinic. I was with both of my really freaked out parents and she showed us to the patient room and I climbed onto the patient table. She looked at me and said, "Well you just hopped right up there just like a 16 year old!" Well, yeah. Because I was. As I soon learned, though, this was kind of novel for her because apparently (what a surprise) they didn't have any other 16 year old melanoma patients. Well I guess they kind of did, like if you multiplied 16 times 3...or 4...or 5. Yeah, I was definitely a baby compared to the other patients. As if I didn't feel out of place enough. Oof.

My doctor was great though, in terms of talent and expertise. Somehow, though still unknown to me, we managed to get in with the best doctors with the longest waiting lists with just a phone call. Maybe my parents "knew people" I was unaware of, or perhaps these doctors were intrigued by my case (much in the way that I am intrigued by those 200 pound babies on Discovery Health Channel). Regardless, I was blessed with an amazing team of physicians and nurses.

When my doctor walked in the room at that first appointment, my mother took an instant dislike to him. He was kind of awkward and didn't know where to look and I could kind of get that sense from him that he was terrified that if he even touched my shoulder that my father might body slam him (he's intimidating like that, my father is). He must have known that we all had some high expectations from him. Nothing extreme, just: fix me, make sure nothing else ever happens to me, don't put me in any kind of pain, and make my life super normal again. Don't they teach that in medical school? I guess not (not until I'm a medical school professor at least, and then it will be in the core curriculum, ha).

Anyway, I remember exactly how he looked at me: with interest, deliberation, and like I was a space alien sent to destroy him. I guess he wasn't used to the 16 year old patient, either. I was quite a commodity! He did his best to field the questions that were being thrust upon him at an average rate of 45 per minute. However, the fact that he was clearly uncomfortable got him some major strikes with my mom (we like to hug), and he's lucky she didn't demand to see his diplomas (not that she's demanded that from other physicians, I mean a request is different from a demand...). However, over the next year we broke down the awkward walls between us. He became more comfortable with a patient who didn't wear dentures and I went more with the flow. It didn't occur to me until years later (and by "occur to me" I mean my mom told me) that a lot of the doctors who worked with me were pretty freaked out because my case was so unusual and rare, and they had teenage daughters. So essentially, it could have been their own daughter sitting there. After she told me that I started to understand more about the avoidance of eye contact and occasional hurry to get out of the room. But there I digress again.

So we started my treatment. I was so ambitious when we first started! Going to boarding school an hour outside of Birmingham, this whole daily treatment thing was going to wreak havoc on my schedule. But I had it all figured out: On Mondays I'd get morning treatment then go to school for afternoon classes and Tuesday morning classes and come home for Tuesday afternoon treatment. Then Wednesday morning treatment and so on. Remarkably, I actually did stick to this regime... Well, for like 3 days. Then it became more of a, "Oh that's what they meant by horribly nauseated and throbbing head and dehydration..." And I missed a solid few weeks of school.

The interesting (and by "interesting" I mean "incredibly awful at the time") thing is that although they had seen countless people undergo my type of treatment before, they couldn't really tell us how it would affect someone my age. Some of the things they told us were accurate: I dropped a ton of weight, felt sick, exhausted, etc. Some things they told us were less accurate, like I ended up losing about half of my hair (that wasn't a typical side effect), but wow did it make my showers more interesting (and terrifying as I rinsed away clumps at a time). Still, it's not like I could stop or had a choice about it. The medicine did weird stuff to me, but I needed the medicine, so it won. And all of this before even turning 17.

Let's review the past

So here's the quick and dirty about me and my cancer:

I was diagnosed with a rare stage 3 melanoma at the age of 16. Two surgeries, a year of chemotherapy, and now I go for my yearly scans and check-ups.

Now for those of you who are a little more invested, here's the narrative version of that tale:

Around May of my junior year of high school I noticed this bump coming up right in the middle of my chin, below my bottom lip. Since I was a veteran of every unsightly acne blemish a teenager could have I assumed it was one of those gross "oil pocket" things (I'm sure there is a medical term for it that might be somewhat less graphic, but this is the term I always use and people nod as if they know what I am talking about, so I'll stay with it). It was perfectly skin colored, not too bad. I took my usual course of action: topical cream and a visit to the dermatologist. The dermatologist agreed with my educated opinion and injected the bump with cortizone. However, a couple of weeks later it was still there...

Slightly impressed with its tenacity but more annoyed at having a big bump on my face, I returned to the dermatologist. He decided he'd just slice it off, show it who was boss, send it for routine testing, and so on. Standard procedure. I remember joking, "It's not a tumor or anything is it? HA HA HA." He assured me it was nothing of the sort. I was on board with this plan until the unexpected occurred. Within 3 days, my irritating little blemish was back. Completely. As in, jutting out of my face. Still skin colored, perfectly round, like the little eraser end of a pencil.

More aggravated than concerned, I returned the the dermatologist who decided to repeat with the slicing and sample sending. His new stance on the issue, "Well, it is a tumor, but it's not like a cancerous one or anything." Reassured, I went home with a bandage on my chin and the inentions of lying low until that sucker healed up. Three more days passed, though, and I'm betting you can guess what happened. That's right, that guy was back in full force, mocking me and my feeble attempts to eradicate him.

Call from aforementioned dermie, "Okay, well it actually does kind of, sort of, maybe look a little like cancer from the first reports we've gotten back...but it's not like a melanoma or anything!" (Oh, this guy...) He recommended I see a plastic surgeon just to have the whole blasted thing removed: core, and all. Well sure, why not? So we went to a family friend who did just that. I returned home with a sweet scar starting from at the middle of my chin and extending through my bottom lip. Since I hadn't known they were going to be cutting through my bottom lip you can imagine my surprise when I woke up! Still, it was over and done with, and time to get ready for senior year (Seniors 2003, what's up!). No dice.

They had sent the sample all over the country to different diagnostic centers, and guess what? It actually was, in fact, melanoma! You can imagine all of our surprise given the "guarantee" by the dermatologist who had proved so knowledgable, but moreso because, well, you'd have to look at me. I'm a pale, pasty Irish, never been in the sun much, went to the tanning bed maybe twice in my life, and there was no history of melanoma in my family. Plus that thing was the opposite of everything they tell you about melanoma! It wasn't dark or misshapen or growing, etc. Explanation, please? Oh, there's not one, sorry if that was a teaser (but if you have any guesses I am totally up for hearing them!).

So cut to me in my second, much more detailed surgery with all kinds of specialists who not only went through the lip and down the chin, but also across the chin, too. Margins had to be widened, after all. I lost 50% of my lower lip and got an even cooler scar (chicks dig scars, right?). Plus all kinds of scary and painful testing of my lymphnodes and such. Luckily, for that they were able to go through a pre-existing scar I had on my neck (a story for another time), so it wasn't too bad. At least all of that drama was OVER! Or was it...?

No, it wasn't over. Although I thought I could proceed as "normal" after that surgery, in a follow-up visit they told me I'd be meeting with an oncologist.
Me: Weird, okay, whatever, more follow-up.
Truth: I was meeting with an oncologist to figure up a treatment plan.

Umm, treatment plan? That wasn't part of the deal! I had all the surgery, it was gone, I was done! But not in the opinion of the medical community. Because my melanoma was a stage 3 (out of 4) and was so rare and bizarre they thought it best that I do some treatment. Just intravenous (IV) drip for a couple of hours, every day for a month. Oh, and then some injections I'd give myself for the next 11 months... That's all. I hope you know what I mean when I say, "a-hum-annuh-what?". Because that's how I felt. Although ironically, from the girl who can take up to 2 solid weeks to settle on a restaurant for dinner, I was pretty quick to decide our course of treatment from the options we were given. And so it began...